Living with Head and Neck Cancer

MD Anderson Cancerwise Blog Post

2012-02-07T09:49:00.001-06:00

I wrote a new blog entry which appeared in my cancer center's Cancerwise blog today. The blog entry is on simple tools I use to help manage my ongoing care. Following is a link to the post.

http://www2.mdanderson.org/cancerwise/2012/02/tools-to-manage-ongoing-care.html

Enjoy,
Ed

To Walk in My Shoes

2012-02-05T13:31:00.006-06:00

I have blogged in the past about my “new normal.” The “new normal” is the state in which I find myself (physically and mentally) as a result of my cancer and the life sustaining medical treatments of radiation, chemotherapy, and surgery. My “new normal” characteristics include a lack of stamina, a compromised immune system, speech difficulties, swallowing issues, lack of saliva, minor facial paralysis, extremity neuropathy (mostly in the balls/toes of my feet), maintaining a comfortable body temperature, manageable chronic pain, occasional TMJ, and lastly (self-diagnosed) a form of PTSD.

What’s not on this list is the external facial scaring from multiple facial surgeries. What makes this important is 1) my surgeons did an amazing job of facial reconstruction and 2) whatever scars I do have just don’t bother me.

The following is in no way a complaint; it is an explanation of how these changes impact me on a day-to-day basis and I’ll do it by way of two examples. The world that makes up my “new normal” is all internal, there are no obvious visible scars, lost limbs, obvious paralysis, etc. that would alert outsiders (i.e., that’s everyone outside my body) to see that my world may be different than theirs. This point is important! I look normal to everyone and the halo effect takes over until I do something that may seem anti-social or unusual.

Example 1: Oral hygiene. Without rehashing old news, I have trouble keeping my oral cavity clean. While the majority of what I drink ends up in my stomach (where it should), some of it remains in my oral cavity, upper esophagus, and at times in my wind pipe. I can’t wash it down, brush it out, gargle or find any other effective means of keeping my oral cavity clean. I have to spend time after each meal meticulously washing my oral cavity. What this means is that I like to eat (and I use that term loosely) twice a day so that I’m not spending more time than necessary taking care of my oral hygienic needs. A few years ago I bought a used Gomco aspiration suction device off of eBay for $100. To give you a feel for its age, it had a tag that said “Inspected 1977.” It weighs about 30 pounds, is something that you may have seen in your dentist’s office in the 1970s and 80s and is pretty effective at helping me clean my oral cavity. Unfortunately, it’s not all that portable. I traveled from Texas to Virginia earlier this week. My mouth felt very uncomfortable because I couldn’t properly clean it. My wife and I headed to CVS to see if there was a solution to this problem. She found a small electric baby nasal suction device ($31) from Graco. I knew it wouldn’t work as is, but I thought a trip to Home Depot would yield good results. I bought some small plastic tubing and a gasket ($5) and now have a device that does what I need it to. Below is a picture of the device. In addition to all the above, I see my dental hygienist every three months to help keep my oral hygiene in check. Keeping my oral cavity clean after all my treatments is mandatory to my continued good health.

Example 2: Standing and talking. Who out there can not stand and talk? I don’t see many hands. I can stand and talk, but it causes my obturator (a device I wear inside my mouth that helps me with speech) to put a strain on my back teeth which in turn can lead to TMJ and severe pain. It is much more comfortable for me to talk while sitting and, in addition, to not just sit, but to sit in a slightly reclined position. This has an impact on me in social situations. Remember, I look normal. I know standing and talking is a great way to socialize, yet I also know this will lead to pain. I find it awkward to go into another room and sit by myself although this is the action I sometimes take. If I slouch when I sit it is not because I’m lazy, it is because it is more comfortable and in the end will mean less pain. It is these little nuances in my behavior that have an impact on my day-to-day living.

Each and every one of my other differences has their own impacts and nuances. This blog entry is not a complaint; it’s me trying to explain what to some may appear odd behavior, but to me it is a way to manage my differences in the best way I know how.

Take care,

Ed

Texas Doctors Lead Open-Notes Movement

2012-01-25T09:46:00.001-06:00

Following a visit to your doctor, have you ever been:
- curious about what your doctor wrote in your file?
- unsure about what the doctor said?
- confused by medication instructions or anatomy terms you didn't immediately understand?

If so, raise your hand. You can't see me, but my hand is raised.

I was honored a few weeks ago when the Houston Chronicle contacted me and asked if I'd like to be interviewed for an article on MD Anderson Cancer Center's system which allows patients to access their own medical records. A Houston Chronicle reporter, Todd Ackerman, talked with me for about 30 minutes. Last week on January 17 2012, the article was published in the front section (page 6) of the Houston Chronicle. Yes, that's me in the picture. I'm pretty sure the photographer got my "good" side.

I won't repeat the article's contents, but the gist is that open medical records can reduce patient anxiety, improve patient/doctor communication, and save time. Here's a link to the article.

http://www.chron.com/news/houston-texas/article/Texas-doctors-lead-open-notes-movement-2575183.php

Enjoy.

Ed

Five Facets of Your Employer Health Insurance which may Surprise You

2012-01-14T08:56:00.002-06:00

Health insurance purchased through your employer is an agreement between you and your employer to provide medical services and medications in exchange for payment premiums in the event such services or medications are required. It is similar to other types of insurance including automobile, homeowners, and life. One hopes they never have a need for the insurance, but if the need arises, one expects the agreement to be honored. From the time I entered the workforce in the mid 1970s to the time I left the workforce 30 years later in the mid 2000s, I always participated in and purchased health and life insurance through my various employers and didn’t give it much thought.

My journey into Cancer World has taught me a few lessons about health insurance worth sharing. The following points are some of my experiences and ones which I hope may help others.

#1: Black and white insurance company policy statements become grey areas once the bills begin to accumulate

Let’s begin with the basics, where do you find your insurance policy? Is it the few page description on your company’s website describing in-network providers, out-of-network providers, and co-pays? That’s a good overview and one that is useful to the vast majority of users and uses, but that is not your policy. The real policy is typically found in something called the “Summary Plan Description” or referred to as the SPD. My currently available Summary Plan Description is a 278 page document. To someone who hasn’t given healthcare insurance much thought, this document is intimidating. A brief somewhat comical side note is in order here. For about a year I tried to get the “full” plan document since what I had was the “summary” plan document. The “full” plan document turned out to be a 2 page agreement signed by an executive officer at my company. In short, I’m not sure what the word “summary” connotes in a 278 page document. But I digress.

In 2008, my SPD stated the following as a covered medical expense, “Prescription drugs approved by the Food and Drug Administration (FDA), used and sold in the

U.S.

, and used for a medically accepted reason.”

My oncologist, a highly regarded and published physician at the cancer center rated number one in the country, prescribed a medication to me that in his opinion was medically necessary, was FDA approved, and was sold in the U.S. Based on the information in the SPD, the situation seemed pretty black and white to me. What do you think? What if you were in this situation?

I’ll make a long story short. My insurance company denied reimbursement for this FDA-approved medication. I spent weeks writing an appeal while sitting on some very expensive bills from my cancer center which my insurance company refused to pay. The denial interrupted my treatment plan. About two months after receiving the denial letter and working through the appeals process, my insurance company agreed to pay for past and future medication expenses for the drug which they had denied.

#2: Where an insurance policy states that the company reserves the right to amend, suspend, or terminate a policy at any time, this should be taken seriously

I don’t have any advice here. As such, this is more of a heads up than a facet of your policy which can be reasonably anticipated.

By way of example, my insurance company implemented a new policy in the middle of my cancer treatment specifically targeting the medication used in my treatment. Instead of calling me and giving me some warning about this new policy, they sent me a letter about a month after the policy was implemented denying payment for the treatment. This was after eight (or nine) treatments had already been reimbursed. But, not before two others had been administered. I have no insider knowledge, but it felt like a case of being singled out.

#3: In-Network and Out-of –Network providers are not always clear cut

If your health insurance is like mine, it may cover procedures received in a large medical institution or cancer center. Periodically, I received notices of use for an out-of-network provider even though the provider I saw was in an in-network institution. This in turn would kick-off a deductible and I’d be faced with a medical bill which was unexpected.

Two instances where this happened to me are as follows. A new cancer center employee was not fully registered as an “in-network” provider. She provided medical support to me as part of a team of people in preparation for one of my surgeries. It took a few months to straighten this out between my cancer center and my insurance company. The second instance was a bit harder to sort out. The cancer center had hired an independent contractor and that individual provided medical services to me. This resulted in another surprise and an unexpected medical bill. My cancer center took responsibility for this oversight and ended up writing off her expenses to me. But, it took time and effort to make this happen.

#4: The impact on your insurance when you enter into Long Term Disability is surprising

A book could be written on this subject area, but I’ll cover the highlights. This gets really confusing. Once one has been on long term disability for 2 years, Medicare takes over as your primary health insurance, regardless of your age. Surprise! And, depending on your employer’s supplemental insurance, you may or may not receive adequate healthcare coverage. I’m actually fortunate to have had a reasonable supplemental health insurance plan through the end of 2011. On January 1 2012 my supplemental insurance changed and the premium went up 400%. Sorry, that’s not a typo, 400%. It’s too early in the year to assess the impact of this change to my insurance coverage, but I’m already facing a need for a justification for a medication which in the past needed no prior authorization. The fun (and surprises) never end.

#5: Watch closely for changes which impose maximum reimbursement caps

This would most likely happen during an annual open enrollment period. This happened to me this past year. My prescription drug plan (PDP) which had no cap in the past changed to one with a maximum annual reimbursement cap. This created a lot of anxiety and stress knowing that my oncologist and I had just had an in-depth conversation on my chemotherapy medication and based on the new maximum reimbursement cap, I’d surpass the cap in April and face tens of thousands of dollars in out of pocket expenses. I had some lengthy and productive conversations with my company during the open enrollment period and the month following open enrollment. In the end, the cap was removed from the plan. I don’t know how many people this affected, whether or not my conversations had some impact on this decision to remove the cap, or whether the cap was an honest error on the part of my company to begin with. But, I do feel good about being an informed consumer and believe my discussions had some impact on the removal of this cap.

Conclusion

I realize this is a long post. The above are not the only issues one may face, but they seemed like the top 5 from my perspective. Here are my recommendations:

Read and understand your Summary Plan Description (SPD) document
Stay aware of medical plan changes that may impact your benefits
Be diligent in assessing in-network and out-of-network service providers
Keep good records (by date) of your treatment to support billing issues
Watch for changes in coverage during open enrollment periods

If you have an insurance story you’d like to share publically, please send it my way. You can either post a comment or find my email address in this blog’s profile area. There are some good patient advocates groups that can help you work through your insurance issues, so you are not alone when the need arises. One such group which helped me recently was the Patient Advocate Foundation (PAF) at www.patientadvocate.org.

My last and most important piece of advice is to stay healthy and not need your health insurance benefits. Prevention is the best and least costly cure.

Happy and Healthy New Year Everyone,

December 13 2011 - My 5 Year Cancerversary

2011-12-13T13:19:00.002-06:00

Happy Holidays.

Each year on December 13th I write a blog entry that is a reflection of a nadir in my cancer journey that took place on that date, now 5 years ago today. This year I had the privilege of sharing my cancer anniversary story in the University of Texas M D Anderson Cancer Center blog, Cancerwise. As such, please click on the link below to read today's blog titled, "It's Holiday Time - The Gift of Life" appearing in Cancerwise:

http://www2.mdanderson.org/cancerwise/2011/12/its-holiday-time-the-gift-of-life.html#more

In addition, for ease of reference I am including a link to each prior year Cancerversary entry from my blog.

2010
http://hncancer.blogspot.com/2010/12/december-13-2010-cancerversary-3.html

2009
http://hncancer.blogspot.com/2009/12/december-13-2009.html

2008
http://hncancer.blogspot.com/2008/12/december-13-2008.html

2007
http://hncancer.blogspot.com/2007/12/december-13-2007.html

Lastly, for those who would rather read my entry here without going out to the Cancerwise blog, here it is. But, it looks much nicer on the M D Anderson site.

It's Holiday Time: The Gift of Life

By Cancerwise Blogger on December 13, 2011 8:00 AM | Comments (0)

By Ed Steger

Ed Steger was diagnosed with head and neck cancer in 2005. After 36 radiation treatments, 2 years in palliative care and 5 surgeries he is now in remission. He blogs about living with head and neck cancer at www.hncancer.blogspot.com.

In order to give back to the medical team that saved him, Ed is currently a SPORE Patient Research Advocate at MD Anderson.

Today, Dec. 13, 2011, is my five-year cancerversary. I was originally diagnosed in April, at age 53, with stage III/IV head and neck cancer at MD Anderson Cancer Center. Throughout my cancer journey, the largest setback came five years ago today. Here's my story.

Difficult journey
Between April 2005 and December 2006, I had 36 IMRT radiation treatments, Taxol chemotherapy and four surgeries. One surgery that I often refer to as the "salvage surgery" lasted 12 hours and was followed by two terrifying days in the ICU and a week longer stay in the hospital.

At the time, it was either this surgical procedure or getting my affairs in order. After careful deliberation, driven largely by wanting to see my 12-year-old daughter grow up along with strong encouragement and support from my family, I chose the salvage surgery that took place on July 12, 2006.

It was an incredibly difficult surgery involving the removal of my left side jaw bone, a large section on my upper esophagus, part of my soft palate and a piece of my tongue.

If that wasn't enough, my tibia bone was cut from my leg to replace the portion of my jaw that was removed, necessitating a skin graft on the tibia area.

I recovered from this ordeal relatively quickly. By October, through a lot of determined, physical effort, I had the tracheotomy apparatus and feeding tube removed. By December, my life was getting back to normal.

Just six months after this major surgery, I was actually feeling great. To test myself, I made a trip out West to visit friends and enjoyed a round of golf on the beautiful Monterrey, California peninsula.

There was life after surgery.

Visit with my surgeon changed everything
A CT scan followed by a clinic visit with my surgeon on Dec. 13, 2006, changed all that. The scan revealed five inoperable hot spots. Once again, I was faced with getting my affairs in order. With help from MD Anderson's Palliative Care Unit, I prepared to let go of life and begin the process of dying.

But, as one who believes in having a Plan B, I also visited my MD Anderson oncologist.

One week later, I began an intensive chemotherapy regimen. During the next eight months, I had the proverbial kitchen sink of chemotherapy agents thrown at me: Cetuximab, Docetaxel, Cisplatin, Avastin, Tarceva, more Taxol, Carboplatin and GEMZAR.

It may sound random, but it wasn't. My oncologist and surgeon were monitoring me carefully and modifying my treatment based on my responses. Ten months later and after setbacks that required two relatively minor surgeries, I was declared as having no evidence of disease (NED).

The five inoperable hot spots literally melted away. That was in October 2007, more than four years ago! Two years ago, I was reclassified as being in remission.

So, this holiday season, I have the gift of life.

I was able to see my daughter graduate from high school last May and begin the next stage of her life as a beautiful young woman and a college freshman.

It has been hard, but it's so worth it.

I intend to keep moving forward and giving back, in my own unique way, to the community who made it possible for me to be here today. I am so very grateful for the untiring efforts of my medical team at MD Anderson.

For all those who have participated with me in this journey, including physicians, researchers, support staff and my spouse, family and friends, I wish you a happy holiday season and thank you with all that I have for this generous and unbelievable gift.

"You have cancer." What now? My Top 12 List (updated).

2011-11-11T15:04:00.007-06:00

Two and a half years ago on March 19 2009 I wrote a similar blog entry. A link to that entry is at the bottom of this post. There is a revolution (see number 7 of 12 below) taking place in the world of cancer prevention, detection, and treatment. If you or someone close to you was recently diagnosed with cancer or are currently undergoing treatment, this list is for you. I've written about all of these topics before, but so much research and translational science work is coalescing, it felt like time for an update.

1. Know your cancer. The American Cancer Society (ACS) published a 68 page PDF containing a wealth of cancer information covering the year 2010. They estimated that there will be over 1.5 million new cancer cases diagnosed and almost 600,000 deaths (1,500 per day) in 2010. There is a marked increase in the 5 year survival rate when comparing a period in the mid 1970s (50%) to a period in early 2000 (68%). The document highlights 15 different types of cancers (many with multiple sub-types) listed along with cancers stratified along geographic, demographic, race, and ethic backgrounds. The document then delves into specific cancers. The more you know about your cancer, the better off you are in working with your medical team and making decisions about how to proceed. This document published by the ACS is a great starting point.

2. Use the Internet. This is such a powerful tool to research your specific cancer and discover the resources available. My focus is on head and neck cancer. So, by way of example, I've found the following web resources. 1) SOPHNC - Support for People with Head and Neck Cancer (www.sophnc.org). They have 108 support chapters throughout the US, many of which meet at least once a month. They also have the National Survivor Volunteer Network (NSVN) which matches patients and caregivers going through treatment with people who have already gone through similar ordeals. 2) The Oral Cancer Foundation (www.oralcancerfoundation.org). This is a non-profit entity designed to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities. 3) The Head and Neck Cancer Alliance (www.headandneck.org). This was formerly known as the Yul Brenner Head and Neck Cancer Foundation. Much of their effort goes into prevention and fund raising.

Most of these sites have Newsletters on up to date treatment breakthroughs, patient and caregiver forums, activities on how to become involved, and fund raising. For head and neck cancer, this list just touches the surface; there are dozens of other reputable sites (e.g., www.CancerCompass.com, www.redtoenail.org, www.beingcancer.net). Although I haven't focused my attention on other cancer types, I suspect that more pervasive cancers have an even greater treasure trove of support and information resources available.

3. Find the right cancer clinic. Cancer will kill over 600,000 people in the US this year. That is more than one death per minute, 24 hours per day, 365 days per year. Cancer doesn't take off for weekends or holidays. Finding the right clinic can help save your life. In my journey I've met enough people who either said, if I hadn't come here (referring to their current cancer center), I'd be dead now. On the other hand, I’ve known people who have passed away, in some cases unnecessarily, because they waited too long to find the right cancer treatment clinic. You want a cancer clinic that specializes in your type of cancer. Many clinics are fully prepared and qualified for plan A, but if plan A doesn't work, they are not going to be able to perform plan B. Plan B for them is referring you to a larger, better equipped center. For me, I’d rather start off with a clinic that can perform plan A, B, C, and D.

4. Find the right doctor(s) within the cancer clinic. I switched one of my doctors within my cancer clinic after the first year. I lost faith in my original doctor, so I asked to switch doctors. This is your life, and you should feel confident in the treatment prescribed. There are many options, and being an informed patient will help in choosing a path that is right for you.

5. Treat your core set of doctors as a team. Cancer is so complicated, one doctor is not enough. To be great, doctors specialize. In my case, the core team included an oncologist, surgeon, radiologist, and their physician assistants. They have been supplemented at times with other doctors who specialized in pain management, psychology, and other areas. You should understand how your doctors collaborate. For me, I liked knowing that each week my doctors gathered to talk about each patient, their treatments, progress, and next steps.

6. Understand your treatment and options. This means their probable success, timing, and life altering outcomes. Cancer is treated in slang terms as slash (surgery), burn (radiation), and poison (chemotherapy). These terms were not arrived at lightly. Many cancer treatments are as much art as science. Even the best doctors don’t have all the answers and field is constantly changing. They use their best judgment and if you are confident in your doctor, then you will have an easier time choosing the right paths.

7. Consider genetic testing. This is where the revolution is taking place and it may save your life. If your cancer center doesn't offer a genetic testing service consider a different cancer center or an independent testing laboratory. There are now many therapies which target specific genetic mutations. A great example of this is the EML4-ALK mutation in lung cancer. I've written about this before and you can search my blog or the Internet for more information on this specific mutation. The discovery of this mutation and the drug, Crizotinib, which has thrown a life line to about 7,000 lung cancer patients per year in the US is a remarkable success story for select patients, researchers, physicians, and pharmaceutical companies. In addition, Vanderbilt-Ingram Cancer Center has created a public database named My Cancer Genome at www.mycancergenome.org which currently lists six cancers including breast, lung, prostate, and melanoma where genetic mutations have been identified and based on a specific mutation, therapies have been shown to be effective in treating that mutation for that cancer. This whole field is causing an explosion of paradigm shifts within cancer centers, pharmaceutical companies, and even in the basic building blocks for how cancer is viewed. I'll touch on each of these areas briefly.

Cancer centers - MD Anderson Cancer Center recently announced the establishment of the Center for Targeted Therapies (CTT). See reference. The CTT's mission begins with hypothesis-driven research that identifies and validates targets; continues with the discovery, development and design of biological therapies and drug agents; and is followed by pre-clinical and clinical trials – with each step working toward the goal of personalized medicine. In an ASCO presentation last June, MD Anderson announced a goal of genetically testing each of their 30,000 patients annually within 5 years. In another example, the University of Pittsburgh Medical Center (UPMC ) recently announced that it will invest nearly $300 million to create the Center for Innovative Science, a research facility that aims to revolutionize the way treatments are designed for individual patients.

Pharmaceutical companies - Using Pfizer as an example, they created the drug Crizotinib for the treatment of the EML4-ALK mutation. Although this only addresses a small subset (4%) of people with non-small cell lung cancer, they made the investment and were successful in gaining fast track FDA approval for this drug on August 26 2011. In addition, Abbott Labs won speedy FDA approval for a test for this mutation. What is remarkable about this is the pharmaceutical company's recognition of the importance of how genetic findings will drive treatment approaches in the future. When one compares this to a drug like Lipitor, a cholesterol lowering medication and another Pfizer product having over five billion dollars in sales in 2010, it is this paradigm shift which is pushing even the largest drug companies to pursue drugs with relative small target populations. As a side note, a number of pharmaceutical companies offer assistance to those who can not afford an expensive chemotherapy agent. Talk to your cancer clinics business or clinical trial area for more information on this topic.

Basic building blocks for how cancer is viewed - Today, when one talks about cancer, they talk about lung cancer or breast cancer or prostate cancer, etc. The paradigm shift taking place in this area is talk about genetic mutations transcending specific cancer types. The American Society of Clinical Oncologists (ASCO) published a document last month which gives weight to this shift in thinking. I wrote about ASCO's document in my last blog entry and as such will not repeat myself here, but I predict that this shift is coming and there are cancer centers like MD Anderson, UPMC and Vanderbilt-Ingram which are embracing this shift. Then, there are the others. What is your cancer center doing in this field?

8. Understand clinical trials. Clinical trials are typically categorized as I, II, III, or IV. In a Phase I trial, the researchers are generally looking at the toxicity impacts on the human body. These trials are generally small with 10 or less humans. Phase II begins to assess drug efficacy. There may be varying dosages within a Phase II trial looking for the magic bullet and right balance between dosage and efficacy. Phase II trials are still primarily experimental and will be limited to a few hundred people. Phase III trials are where it goes mainstream. The research has proven that the drug can be tolerated (Phase I) and it has shown some promise (Phase II). A drug in a Phase III trial could include 1,000s of people across many different medical institutions and countries. They can take years to complete. One drug I’ve been interested in -- Crizotinib -- has been under study for about 4 years. There are currently 21 trials listed for this drug with a status of active, recruiting, terminated, or completed. Clinical trials have very specific inclusion and exclusion criteria. The http://www.clinicaltrials.gov/ website allows you to search among its 116,000+ trials taking place in 178 countries. This is a great resource. There may be a clinical trial out there for you.

9. Learn to live with uncertainty. As mentioned, for many cancers, treatment is as much art as science. It can take months for chemotherapy drugs to work or not work. It can be months between major tests. Some surgeries will require the surgeon to keep cutting until they find clean margins. They may not be able to tell you beforehand how much permanent damage there will be, how long the recovery time may take, or even if the surgery will be successful. I remember waking up after a major surgery. In the recovery room, the doctor was talking to the patient in the bed next to mine. He said, “I’m sorry, but the cancer has fully taken over several vertebrae and we were not able to remove it.” I could tell it had been a long, complicated surgery. I couldn’t see the patient as there was a curtain between us, but I could tell that the prognosis was bleak.

10. Understand your health insurance in depth. Read your health insurance document. Not just the guide, but the entire plan document. There are a lot of areas that become gray to one’s insurance company when the bills start coming in. What looked like a no brainer suddenly becomes a major issue. My insurance company has been reasonable, but not without a few major fights. Know your rights, stick up for them, and use the appeal process if you feel your rights have been violated. For those who have been paying insurance premiums for many years, it is an obligation (contract) for the insurance company to support your needs should they arise.

11. Take charge of the cancer. To the extent possible, don’t let the cancer control your life. There are drugs and therapies that can help you manage chronic, acute, and psychological pain and issues. Take advantage of these resources and make the most out of your current situation.

12. Understand the impact of your cancer on family and friends. Cancer can create stress in relationships. It can also create bonds. Sometimes cancer impacts close family and friends more so than the cancer patient. It has certainly impacted some of my relationships -- some for the better, and some for the worse. This impact can be more powerful than the cancer itself.

I hope sharing this information is helpful. If you would like to comment or add to the discussion, please post a comment. If you have ideas for other discussions or topics, please let me know.

References

"You have cancer." What now? My top 10 list (from March 19 2009)
http://hncancer.blogspot.com/2009/03/you-have-cancer-now-what-my-top-10-list.html

ACS 2010 Statistics
http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-026238.pdf

MD Anderson Center for Targeted Therapies
http://www.mdanderson.org/education-and-research/research-at-md-anderson/early-detection-and-treatment/centers/center-for-targeted-therapy/index.html

UPMC Announcement
https://www.dtmi.duke.edu/news-publications/research-news/upmc-to-build-300-million-center-for-innovative-science

FDA Crizotinib Approval
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm269856.htm

Abbott Labs ALK mutation test
http://www.genomeweb.com/blog/abbotts-alk-mutation-companion-dx-finds-home-ahead-schedule

Lipitor sales information
https://www.google.com/search?sourceid=navclient&ie=UTF-8&rlz=1T4DKUS_enUS214US215&q=lipitor
.

Panomics

2011-11-08T09:47:00.004-06:00

Panomics is a word I've been hearing in oncology lectures and reading about in oncology-related materials, but when Googling it, it had no clear definition. This week I received an email from the American Society of Clinical Oncologists (ASCO) with a link to a document titled, "Accelerating Progress Against Cancer - ASCO's Blueprint for Transforming Clinical and Translational Research." A link to the document is at the bottom of this blog entry. Within this document, the word PANOMICS is used to refer to, "the combination of genes, proteins, molecular pathways, and unique patient characteristics which together drive the disease [cancer]." This document far exceeded my expectations as to deep thinking and actually does provide a roadmap for winning the war on cancer. It should be a must read for everyone in the cancer field - clinicians, researchers, and administrators. It's easy to read and short, but puts forth three simple guiding strategies.

It starts off compellingly by asking the reader to envisioning what the "patient" experience will look like in the future by tying together their genetic profile, all known medical information about that individuals at the touch of a button, and faster and smarter clinical trials. All this points clinicians to targeted therapies which have been shown to work in patients with a similar profile and steers them away from those therapies which have shown no benefit. The document talks about the importance of biomarkers and the leveraging of patient health information systems. It also lists three strategies to reach the goal of curing cancer. I won't articulated them here, but for those who are interested, please click on the link below and begin reading about wining the war on cancer.

Take care,
Ed

ASCO Article:

http://www.asco.org/ASCOv2/Department%20Content/Cancer%20Policy%20and%20Clinical%20Affairs/Downloads/Blueprint.pdf

Timeline of Cancer Progress - Explore 40 years of advancement in cancer treatment, detection, and prevention (a very cool interactive website referenced in the above document):

http://www.cancerprogress.net/
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Meltdown

2011-09-12T21:36:00.000-05:00

I was at my cancer center today for two reasons. First, to have my obturator adjusted. Wearing it created enough pain that I stopped using it at the expense of loss in the quality of my speech. Some adjustments were made and I have a follow up appointment next week to assess whether or not a new device is required. Second, I began a volunteer role as a patient research advocate a few months ago. My primary responsibility to date has been to attend a one hour meeting each month.

While at the cancer center, a man of about 50 years old was pushed by me in a wheel chair. He was having a complete meltdown. It's not often that one sees a grown man cry. Cancer is a terrible disease. It's been 4 plus years, but I've been there on at least four occasions. I remember each one vividly. I'll share one here briefly. It was on September twelth four (or five) years ago today. I was in the chemotherapy unit scheduled to receive some very toxic substances. A nurse was making attempt number four at getting an IV line going. First one arm then the other, then the back of my hand when the other usual suspect areas didn't work. It was also the anniversary of my mom's death. She died at age 72 after a 6 month battle with lung cancer. The world felt pretty crummy right about then between the poking, the anticipation of toxic substances, and my mom's death from lung cancer. I lost it and had a good hard cry. I don't know anything about the man in the wheel chair today, but I know that cancer can have that affect of you.

Mom - rest in peace, thinking of you today.

Love,
Ed

Today's FDA Avastin Decision

2011-06-29T19:39:00.001-05:00

There's a lot of news out there about the FDA's 6 to 0 vote today recommending that Avastin not gain full approval for treating women with metastatic breast cancer. This case has been watched closely by both drug companies and cancer patient advocate groups. The final decision for withdrawing full approval rests with the FDA Commissioner, Margaret Hamberg. According to one news source, that decision will be rendered later this summer.

I've followed this issue closely. I'm not going to comment on the accelerated approval process granted by the FDA which allowed on label use of this drug sooner than later. With some fear of upsetting people who sided against the FDA, based on what I've read and after careful consideration, the FDA panel is making a sound recommendation.

I base this on the assumption, which I believe to be true, that the NCCN (National Comprehensive Cancer Network) Compendium will continue to list Avastin as a treatment option for breast cancer. This compendium is used by many insurance companies and Medicare to determine which treatments will be reimbursed. The panel's recommendation and ultimate decision to remove the breast cancer approval will not prevent doctors from prescribing Avastin to their breast cancer patients. In addition, Avastin is a serious drug with potentially deadly side-effects (internal bleeding). Unfortunately for patients, Genentech, and our hope for a cure, Avastin showed only marginal benefit in two recent studies. There are many, myself included, that for some people Avastin is the answer and our medical community is hard at work to find the bio-markers which show which patients have the greatest chance of success without endangering women who will not benefit.

Today's recommendation is a win for patients, doctors, and the FDA. Patients will continue to have access to this treatment regimen, insurance companies will continue to pay for the treatment, doctors will still be able to prescribe it to patients who they believe it will benefits, and the FDA is protecting the American people against unnecessary risks.

In closing, I credit my medical team who had the foresight to treat me with Avastin (in off-label use for head & neck cancer) with significantly prolonging my life although I can't prove that it was the Avastin that did the trick. I wish the two recent Avastin breast cancer studies on which the FDA panel based their recommendation had shown great benefit for breast cancer patients, but they didn't.

Lastly, I apologize to anyone I may offend for having sided with the FDA on this one. It is not about the money, it is not about death panels, it is not about Obama care; it is about the science.

Take care.

What a H&N Cancer Patient doesn't want to have...

2011-06-24T12:31:00.000-05:00

A sore throat. For most people, me included, a sore throat was (past tense) just that and nothing more. We all get them. That was then; now it dredges up a lot of bad memories and negative possibilities. I've been feeling a bit under the weather for about two weeks with frequent migraines, more than the usual fatigue and loss of appetite, and a SORE THROAT. I went to the doctors today for my annual physical (it's actually been a few years). They swabbed my throat and it came back positive for type A strep. I began a 10 day regimen of an antibiotic. In researching this on the Internet, it appears that this is a pretty common illness and that whatever contagion I may have will be gone within 24 hours of beginning my medication. For now, the best cure is a little extra rest.

I can't not wonder how I got this. I realize this is a stretch with possibly scant medical backing. For me, I believe it to be a somewhat compromised immune system from my cancer and all my cancer treatments and a potential side effect of the stress and close people contact associated with traveling (that trip to ASCO 2011 in Chicago two weeks ago). I've mentioned in the past that travelling is a challenge for me, this is one of a number of those challenges... real or imagined.

Take care everyone.

Ed

Targeted Cancer Therapies - A Peek Behind the Curtain

2011-06-14T16:27:00.001-05:00

Lions, and Tigers and Bears! Oh my! It took Dorothy courage to look behind the curtain in the city of Oz. She found the Wizard.

I recently took a peek behind the curtain. For me, more so than courage, it was curiosity and a desire to make a personal contribution which prompted me to attend the June 2011 American Society of Clinical Oncology (ASCO) conference, Patients Pathways Progress. This is the premier annual oncology conference in the world. It attracted 30,000 oncology professionals. There were hundreds of sessions ranging from the kickoff of a large keynote address to meetings with individual researchers who were peer-selected to display their ground breaking research.

I expected to find a few presentations on the biology of cancer and how our growing knowledge of genetic science would lead to targeted cancer therapies. As with Dorothy in The Wizard of Oz, what I found behind the curtain surprised me. Unlike Dorothy, I found a set of true wizards comprised of oncologists, molecular biologists, epidemiologists, and statisticians who were willing to share their latest breakthroughs in the hopes of collectively and collaboratively finding cures to cancers.

Out of the dozens of presentations in which I participated, my personal favorite was the one delivered by Apostolia M. Tsimberidou, MD, PhD, titled Personalized Medicine in a Phase I Clinical Trials Program: The M. D. Anderson Cancer Center Initiative. The hypothesis of her study is, “Genetics and molecular analyses of patients’ cancers will identify biomarkers for targeted therapies that will improve clinical outcomes.” A phase I non-randomized trial within M. D. Anderson’s Investigational Cancer Therapeutics department was begun in 2007. The trial used tissue from patients referred for treatment to this trial to identify genetic mutations. If a genetic mutation was found and a drug regimen was available that targeted that specific mutation, the patient was enrolled in this phase I trial. Of the 1,144 patients whose tissue sample was analyzed for molecular aberrations, 40.2% were identified with one or more cancer-suspected genetic defects. This patient set was then placed on either a “Matched Therapy” or a “Therapy without Matching” regimen. Here’s the bottom line. The “matched therapy” group showed a 27% positive response rate whereas the “therapy without matching” group showed a 5% positive response rate. The conclusion, based on rigorous statistical methods, was that the matched therapy group faired far better than the non-matched group. By my way of thinking, more than 5 times better. The studies long term goals were twofold. First, over the next five year they hope to develop the capability to test all of M. D. Anderson’s 30,000 new patients a year for any genetic/molecular aberration in order to assign targeted therapy. Second, to perform research that proves efficacy so that the tests are reimbursed and become the standard of care.

This one presentation was one of hundreds during this five day conference focused on genetics and targeted therapies. This is what elevates my hope for a cure. Although targeted therapies are a relatively nascent science, the acceleration of discovery is shifting into high gear. As Dorothy said to Toto upon her arrival in Oz, “We’re not in Kansas anymore.”

"Major Shift in War on Cancer"

2011-06-06T07:09:00.023-05:00

This is the headline of an article in today's (June 6 2011) Wall Street Journal regarding the 2011 ASCO (American Society of Clinical Oncologist) conference currently being held in Chicago at the McCormick Place conference center. There are about 25,000 attendees. Although traveling is a challenge for me, I am here as a patient research advocate volunteer and am honored and somewhat humbled to be one of those in attendance.

The WSJ article goes on to say, and I quote...

"New research is signaling a major shift in how cancer drugs are developed and patients are treated—offering the promise of personalized therapies that reach patients faster and are more effective than other medicines.

At the heart of the change: an emerging ability for researchers to use genetic information to match drugs to the biological drivers of tumors in individuals."

Here are some of the highlights from my perspective based on people I met, presentations attended, and the overall conference materials:

About 30% of the several hundred large presentations are on a deeper understanding of the genetics within many different cancers... head & neck, lung, ovarian, breast, melanoma, etc. In sessions I attended there is a focus on finding combinations of mutant genes which lead to cancer (or a prediction of cancer) versus a prior focus of finding one single gene mutation. Finding these gene combinations is akin to finding a needle in a haystack, but large teams of medical doctors, molecular biologists, and other researchers across cancer institutions and international boundaries are attacking focused research and making progress.
I spent an afternoon meeting with drug company representatives. The larger companies like GSK, Abbot Laboratories, Genentech, Pfizer, etc have 1,000 square foot plus exhibition spaces. Most of them have a subset space for discussions on current research staffed by highly knowledgeable researchers and molecular biologists. This resource allocation confirmed for me the conference’s focus on finding cures through deeper genetic understanding.
About 20% of the exhibition space was dedicated to companies specializing is what appeared to be the most current technologies and biology's available for genetic mutation detection. The cost of testing is falling rapidly. There are three primary testing techniques. Single gene testing costs begin at about one hundred dollars while testing an individual’s entire genome is about ten thousand dollars. Elapse time for gene testing from patient consent to results has been shortened, but is still a 3 to 4 week process.
Researchers are beginning to test genetic defects across cancer types. This is the paradigm shift I wrote about in my prior blog entry. It is too early to know what fruit this will bear.
Multi drug cocktails are resulting in evidence-based patient benefits.
Genetic testing is still part art and part science. Testing methods and processes are being refined and as these refinements are put into practice better data will lead to quicker and more accurate results.
Genetic mutations are complex. There are missing gene pieces and gene mismatches. Some gene mutations promote tumor grow while other gene mutations affect genes which, when working properly, inhibit tumor growth. The downstream effect of promotion and inhibiting have very different biological effects that can affect many (up to about 100) cell processes. This is one of the factors that make finding a cure, even after finding a mutation, so complex.

It is hard to summarize this annual gathering of the world’s leading oncologists. My takeaway is a true sense of breakthroughs, progress, and an excitement from the participants about winning the war on cancer. For some patients it will come too late; for others it will mean the difference between life and death.

Take care everyone.

A Paradigm Shift in How Cancer is Evaluated and Treated

2011-05-20T16:18:00.000-05:00

We all know there are many different cancers (lung, breast, ovarian, etc.). We have also heard that within similar cancers there are cancer subtypes. If one goes to a cancer website (e.g., the American Cancer Society at http://www.cancer.org/), it is generally organized by cancer type. Same with medical institutions... lymphomas, lung, bone, breast, etc.

There is a lot of buzz right now for a recent Pfizer drug, Crizotinib, in the fight against lung cancer. Pfizer has isolated a genetic mutation in a human gene known as ALK. It is estimated that 3 to 5% of those with lung cancer have this genetic mutation. Although that's not a large percentage, it's estimated to be 7,000 to 10,000 new cases of lung cancer (out of 220,000) in the U.S. per year. Crizotinib targets this genetic mutation leaving healthy cells alone. In an early trial with 82 patients there was measurable tumor shrinkage in 90% of patients after two months. This compares to an expected response rate closer to 10%. This genetic mutation was identified in 2007. Pfizer is requesting an accelerated approval from the FDA and expects it to be granted this year. The drug, if successful, could be FDA approved by as early as 2012. This would reduce the time of drug development from 8 to 10 years to five years. My hat is off to Pfizer and all those who participated in this discovery and development.

Now for the paradigm shift. What other cancers have this ALK mutation? Head and Neck cancer, Breast cancer, Liver cancer, Ovarian cancer, and the list goes on. An assay for the detection of this ALK mutation is a few hundred dollars. As an early step in a patient's cancer assessment process, would it not make sense to test for an ALK mutation? And, in cases where there is an ALK mutation, would it not make sense to give the patient a choice as to joining a clinical trial for the use of Crizotinib? This would mean crossing organizational boundaries within established medical institutions. Within the best medical institutions, this will not be a roadblock.

For more information, Google Crizotinib. It has been written up in the Wall Street Journal, USA Today, various oncology-oriented publications and by Pfizer. This is truly an exciting development in the war on cancer.

Take car everyone.

Genetically Informed Medicine

2011-04-01T22:27:00.009-05:00

I wish I was smart, astute, or quick enough to have developed the above phase, "genetically informed medicine." It captures part of the essence of my current medically-oriented research obsession. The article in which I read this was titled, The "Me Decade" of Cancer (see Reference #1). It's a play on the baby boomer "me" generation and covers the topics of personalized medicine and genetics. The phase used in the article was by Harold Varmus, Director of the National Cancer Institute (NCI).

There is a quiet revolution taking place in the world of genetically focused cancer treatment.

For those with Ovarian cancer, a non-profit, The Clearity Foundation, will help women create a molecular model of their tumor and based on the specific genetics of that tumor, they will recommend treatment options (see reference #2).
For those with Melanoma, another group, CancerCommons, has created a molecular model of melanoma and is offering treatment guidance based on one's genetic code (see reference #3).
There is even a molecular model for head and neck cancer (see reference #4). This too offers insight into potential genetic-driven treatment options.

I am not sure where all this will lead, but the future of individualize medicine is gaining momentum and appears bright.

Take care everyone.

References
==========
Ref #1 - The "Me Decade" of Cancer
http://www.the-scientist.com/article/display/58059/

Ref #2 - The Clearity Foundation
http://www.clearityfoundation.org/clearity-overview.aspx

Ref #3 - Cancer Commons
http://www.cancercommons.org/

Ref #4 - The Molecular Biology of Head & Neck Cancer
http://www.medscape.com/viewarticle/735920

Once again, I'd like to encourage a dialogue with those that find this information useful. It is easy to post a comment. Below is an image of a world map with pin points of recent blog visitors. Although many readers live in the US, this blog has gained a truly global following... India, Australia, Singapore, Egypt, Greece, Switzerland, Nigeria, and many other foreign lands.

You can double click on the map image to enlarge it.
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An “Ah-Ha” Moment for the Oncology Community

2011-03-22T21:30:00.009-05:00

This is my third attempt at writing this complex blog entry. The first two attempts were too cumbersome and convoluted; they did however help me crystallize my viewpoint.

Here’s the hypothesis…

Given relatively recent advances in genetic testing, the human genome project, the cancer genome project, and human cell molecular modeling, individual results from clinical cancer trials are being sorely underutilized.

Personally, I’m closest to head and neck cancer as I follow news stories on it daily. However, my hypothesis applies to all clinical cancer trials. I will use a head and neck clinical cancer trial as an example in support of this hypothesis.

There are a set of head and neck oncologists who believe that patients with recurrent head and neck squamous cell carcinoma who do not respond to platinum-based chemotherapy have run out of treatment options and in turn have a very poor prognosis. See link in Reference #1 at the bottom of this blog entry. The article is about a paper presented at the 2010 ASCO (American Society of Clinical Oncologists) meeting and it backs up this assertion of a poor patient prognosis.

There have been early phase clinical head and neck cancer trials which on the surface have shown promising, but inconclusive results. See link in Reference #2 at the bottom of this blog entry to clinical trial NCT00442507 at www.clinicaltrials.gov. This was a phase II trial using a combination of Tarceva and Avastin that included 48 patients beginning in March 2007 and ending in January 2009. The results of that trial were printed in an article on www.cancerconnect.com (see Reference #3). On the surface the results of the clinical trial are positive, but lukewarm… Article headline, “Combination of Avastin® and Tarceva® Shows Promise in Head and Neck Cancer.” If you read the article it goes on to say, “Seven patients experienced a complete or partial disappearance of detectable cancer.”

Here’s the quandary. A group of oncologists at last year’s preeminent oncology event, ASCO, reported that the prognosis for recurrent head and neck cancer patients who failed platinum-based chemotherapy was poor. Yet, we have a study which completed in January 2009 where seven patients which fit the profile of this poor prognosis group experienced a complete or partial disappearance of detectable cancer. To my eyes, this is a major disconnect in viewpoints.

If, and this is a big “if,” one was able to use recently developed genetic testing to have pre-picked just those seven patients for this trial, the article headline would have read, “HEAD & NECK CANCER CURED IN SOME PATIENTS,” it would not be “Shows Promising Results.”

If I were part of the oncology community, this would be an “Ah-Ha” moment for me. What can we learn from those seven patients that will allow us to effectively use these targeted chemotherapies to save lives efficiently? I don’t know if the oncologists running this clinical trial have thought about exploring this path of reasoning. If my hypothesis is correct, they haven’t. In this example, I hope I'm wrong.

To test this hypothesis, I’m going to try and contact the oncologists for this clinical trial to understand where the results from this trial have led. Please remember, this is just one example. In a more strategic sense, what can we learn from all the other individual successes in all the other clinical cancer trials that have been recently completed or are in progress? My hypothesis says that the individual successes are being underutilized. More on this story as further facts are known.

Take care everyone.

References
==========
Ref #1 – 2010 ASCO Presentation article
http://www.medpagetoday.com/HematologyOncology/OtherCancers/25227

Ref #2 – Clinical Trial
http://clinicaltrials.gov/ct2/show/NCT00442507?term=head+neck+tarceva+avastin&rank=7

Ref #3 – Clinical Trial results article
http://news.cancerconnect.com/combination-of-avastin-and-tarceva-shows-promise-in-head-and-neck-cancer/

Post Script
==========
I struggled with this blog entry. Another appropriate title would be, "Reverse engineering a cure for cancer."
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Genetics and Cancer Treatment

2011-02-03T12:43:00.001-06:00

This blog entry is not about my cancer. It’s focused on how genetic research and findings are transforming the field of cancer treatment. The first part of this blog will provide a foundation by way of definitions and a few basic premises. The second part will cite an article in today’s WSJ about how genetic testing could improve the prognosis and ultimately the treatment of prostate cancer.

Definitions, Foundation, and Hypothesis
==================================

Cancer cells: Uncontrolled growth of aberant cells in the body. Cancer cells can grow, divide, and invade normal tissue in the body.

Gene: The basic unit of heredity in a living organism. All living things depend on genes. Genes hold the information to build and maintain an organism's cells and pass genetic traits to offspring. There are approximately three billion genes in humans.

DNA (deoxyribonucleic acid): A long linear polymer found in the nucleus of a cell and formed from nucleotides and shaped like a double helix; associated with the transmission of genetic information

Chromosome: An organized structure of DNA and protein that is found in cells. It is a single piece of coiled DNA containing many genes, regulatory elements and other nucleotide sequences. Chromosomes also contain DNA-bound proteins, which serve to package the DNA and control its functions. Humans have 22 chromosome pairs plus two sex chromosomes.

Genome: An understanding of the complete set of a living organism’s DNA.

Human Genome Project (HGP): An international scientific research project with a primary goal to determine the sequence of chemical base pairs which make up DNA and to identify and map the approximately 20,000–25,000 genes of the human genome from both a physical and functional standpoint.

Cancer Genome Project: Building off of the HGP and using high throughput mutation detection techniques, its goal is to identify somatically (i.e., cells in the human body) acquired sequence variants/mutations and hence identify genes critical in the development of human cancers.

Proteins serve many different functions within the chromosome and there are many different types of proteins. As such, I’m not going to define “protein” see (Wikipedia for a definition if interested). One function of a type of protein is cell division, either to encourage or discourage a cell from dividing. Proteins are complex and some proteins which regulate the growth of cancer cells have unique pathways. Admittedly, my knowledge here is weak and therefore should be treated as such. With this caveat, I’ll try to provide an example. In Head and Neck cancer, which for the most part is Squamous Cell Carcinoma, there is a protein called p53. This protein is also known as a tumor suppressor. There are other proteins which inactivate protein p53. Plus, to add to the complexity, the p53 protein may become compromised. So, in theory, if one could either 1) destroy the mutant p53 protein or 2) inactivate the proteins which inactivate the protein properly functioning p53 (yes, a double negative), then p53 could do its job in blocking the unregulated growth of cancer cells. From here, I’m on even thinner ice as I’m not sure about the relationship between p53 and my next statement (yet). Tarceva, a drug I have been on for 38 months is an EGFR (Epidural Growth Factor Receptor) inhibitor. It has special properties which in some way target a pathway into a protein which plays a significant role in solid cancer tumor growth. This is all very complex, so let me get to the hypothesis of this paragraph.

Hypothesis: If, through individualized genetic testing, one could find patients with an over-expression of the protein (or pathway) which Tarceva attacks, Tarceva (which is very expensive) could be targeted to those individuals for whom there is evidence of benefit (i.e., evidence based treatment). This in turn should increase the overall effectiveness of Tarceva on the population which is genetically receptive to this treatment regimen. It would in turn reduce unnecessary Tarceva treatment and reduce healthcare costs without impacting heath care effectiveness.

Today’s WSJ Article on Genetic Profiling and Cancer Treatment
============================================

You may have thought I forgot about part two of this blog entry. I found today’s (2/3/2011) news story in the WSJ titled, “New Clues to Treat Prostate Cancer,” fascinating. It is about how four genes play an intricate and interrelated role is predicting which individuals with prostate cancers have an aggressive cancer where treatment (e.g., radiation, surgery) is recommended versus one in which it should be watched without treatment.

Here are the article highlights. The findings so far is in mice, not man. Human testing is a few years off. One study cited in the article said that 48 men were treated with radiation or surgery to save one life. (Note, although this was not in the article, side effects from prostate treatment can include erectile dysfunction, incontinence, and surgical complications.) The article went on to say that if this genetic test could increase the odds of determining who should have treatment from our current standard of care test (an individual’s PSA level and biopsy) which predicts at a 60 – 70% to a 90% level that many men with a "favorable profile" might want to monitor the progress of their cancer for a while before deciding to undergo aggressive treatment.

To me, this is a game changer and yet another example of how our genetic understanding will impact medical practice over the coming years.

For those with access to the online version of the Wall Street Journal, here’s a link to the article…

http://online.wsj.com/article/SB10001424052748703960804576120194229203936.html?mod=djkeyword

Take care everyone.

Ed

Happy New Year... And, a Brief Health Update

2011-01-07T11:56:00.003-06:00

Hi,

I had a Head & Neck CT scan and a follow up visit with my oncologist on January 5th. The radiology report was finalized today and all systems are clear. No new evidence of disease and my anatomy, when compared to my last CT scan in June, appears stable. So, all good news.

On the subject of improving my speech and swallowing functions (see background from December 2 2010 blog entry), the news is disappointing. I visited with my reconstructive surgeon and his physician assistant on January 3rd. It had been over three years since I had last seen him. We spent a very high quality hour together going over my options. I won't get into the detail here, they are just not that interesting to anyone but me. The bottom line was... make the best of what I have; surgical treatment is not a viable option due to the treatment risk of performing surgery in an irradiated area. In early December I was in touch with the UC Davis physician who did the implant on the head and neck cancer patient in Uruguay to help with his swallowing function. I may still schedule a consultation with him, but I have to be cautious. For me, even a minor surgery in an irradiated area may lead to long term disastrous complications.

Happy 2011. Stay healthy.

Ed

December 13 2010 – My Cancerversary

2010-12-13T08:24:00.002-06:00

Hi Out There!

4 years ago today my doctor suggested palliative care as a treatment option. Well, I'm still here. Some days that surprises even me. I'm 3 years and 2 months with no evidence of disease (NED) and my current status as of last December moved from NED to "clinical remission."

My sister sent me a book in early December titled, "The Emperor of All Maladies." It is a biography of cancer written by a cancer physician and researcher at Columbia University. It was published last month and was named as one of the 10 best books of 2010 by the New York Times Book Review Magazine yesterday. This blog entry reflects on information covered in that book; it is not a book review, but more about what I took away from it.

The book crystallized a concern which has been nagging at me for some time. The concern is that I am not cured and never will be. Cancer is a series of cell aberrations; it is not just one aberrant cell event. That is why one might hear the term precancerous; it is a cell (or group of cells) which are heading toward becoming cancer, but haven't fully matured. Some precancerous cells never mature, others do. Triggers for moving cells from one stage to another are becoming better understood due to genetic and genome research, but a single cell can lie dormant for decades just waiting for its trigger.

Recent studies support the hypothesis that some cancers are caused by cancer stem cells. By eliminating the body of all known active cancer cells via treatment and entering into a state of remission, cancer stem cells can still remain in one’s body. These unaffected and remaining cells can begin producing new aberrant cells leading to a relapse at any time. This insight, as well as others, is changing the way researchers view the "war on cancer" from one of curing it to one of treating it as a life long chronic illness. Although I am in remission, for me, this war is far from over and I relive it frequently.

The book also reinforced hope for the future by providing a much deeper understanding into the world of targeted cancer drug therapies. I’ve been on Tarceva, a targeted chemotherapy drug, for over 3 years. Two new, potentially more effective, targeted therapy drugs are in the pipeline: OncoVEXGM (about to launch a phase III trial) and REOLYSIN (currently in a phase III trial). Both of these drugs are for head and neck cancer (note, these specific drugs were not mentioned in the book, but I’ve been following their progress elsewhere).

Without complaining (why me), I’ve tried in this blog over the years to provide insight to the reader that explains why cancer is an atrocious disease and at times how cancer patients and survivors feel. There is an excerpt in the book which resonated with me that may help one not touched directly by this disease understand how patients experience cancer. It was written in an essay titled A View from the Front Line, by Maggie Jencks.

Maggie was diagnosed with breast cancer in 1988. She was treated with a lumpectomy and then a mastectomy. For several years she considered herself cured, but five years later she relapsed with metastatic breast cancer to her organs and bones. Aggressive chemotherapy failed and she died in 1995. Her analogy to cancer begins with her being awoken up mid-flight on a jumbo jet and thrown out with a parachute into a foreign landscape without a map. Here’s her essay…

“There you are, the future patient, quietly progressing with other passengers toward a distant destination when, astonishingly (why me?) a large hole opens in the floor next to you. People in white coats appear, help you into your parachute and - no time to think - out you go.

You descend. You hit the ground… But where is the enemy? What is the enemy? What is it up to? … No road. No compass. No map. No training. Is there something you should know and don’t?

The white coats are far far away, strapping others into their parachutes. Occasionally they wave but, even if you ask them, they don’t know the answers. They are up there in the Jumbo, involved with parachutes, not map-making.”

Although written over 15 years ago, the image, for me, still captures the desolation and desperation of many cancer patients. Oncology researchers, obsessed with radical and aggressive therapies, were devising newer parachutes, but with no systemic maps of the quagmire to guide patients and doctors. This is less true today than in the mid 1990s, but more progress is beneficial.

I realize this is a long blog entry, but I would be remiss in not sharing with you some further highlights from the book. Here they are in no particular order.

The profession of oncology got its start based on the observation of the effects of mustard gas in WW I. This seems highly ironic.
Ether, the first anesthetic, was not in use until the late 1800s. Mastectomies have been documented back to 500 B.C. I think back to all those poor women.
If we don’t kill the tumor, we kill the patient. This short simple statement reflects why cancer doctors and researchers take such an aggressive treatment approach. You may have to read it a few times to get its full meaning.
The pap smear was named after George Papanicolaous, a Greek cytologist at Cornell University. He began human trials in the late 1920s. It wasn’t until 30 years later that his earlier discovery began to become a mainstream cancer prevention procedure. For most of his career, he was ridiculed and ignored by his peers as discovering a useless procedure. The ironies in the book abound.
The cancer genome project is in progress and is focused on mapping every cancer gene in every type of cancer. When complete it is estimated to be 10,000 times the size of the human genome project.
We are winning the war on cancer; it just so happens to be a very long and complicated march.

I’ll stop my highlights here, but there were dozens of others such as the effect politics, fund raising, the tobacco industry, dedicated researchers / physicians, care providers, patients, other diseases (e.g., polio and HIV) and cancer advocates have shaped where we are today in the war on cancer.

I'd like to take this opportunity to thank my friends, family, physicians, and researchers for their continued support and effort. It feels good to be celebrating my Cancerversary today.

Take care everyone and Happy Holidays.

Swallowing Difficulties

2010-12-02T09:47:00.003-06:00

The technical term for swallowing difficulties is dysphagia. My diagnosis, based on the results of a fluoroscope test interpreted by a highly trained speech therapist is severe dysphagia. I've written about this in my blog many times as it is the bane of my existence. I am continuing my quest to not just live with this issue, but to somehow fix it. This is partly due to wanting a better life for myself (who doesn't) and partly due to a case of OCD. I have trouble adjusting to things that are broken. In my case, my throat is broken and my ability to truly adapt to it wavers from partial acceptance to "just not going to take it anymore."

I came across an article yesterday (12/1/10) that caught my attention. A Uruguayan physician who is also a oral cancer survivor designed a small very simple implant which has allowed him to drink orally (versus a feeding tube) for the first time in 2 years. The operation was performed in a 45 minute procedure by two UC Davis physicians. Here's a link to the article.

http://www.healthcanal.com/surgery-rehabilitation/12808-Davis-surgeons-test-innovative-device-patient-with-swallowing-disorder.html

What caught my attention was the simplicity of the solution. It is not a panacea for all swallowing issues, but it could help thousands of people quickly and at a low cost. This may allow the patient in this article to live without a feeding tube. The estimated cost (based on other articles I have read) of a feeding tube per patient is $31,000 annually in medical expenses.

For myself, there are four separate issues which have lead to my diagnosis of severe dysphagia.

1) A dime sized hole in my soft palate which prohibits the ability of my swallowing function to create a proper vacuum (or suction) during the swallowing process,

2) Removal of part of my epiglottis which, if it were all there, would protect my airway during swallowing,

3) Removal of tongue and throat nerves which, when intact, help control muscles that make swallowing possible, and

4) Scaring in my upper esophagus (a result of radiation, chemo, and surgery) which have fused parts of my anatomy together that would, under normal circumstances, be working synergisticly and independently.

Here's my plan. First, I'm looking at options for patching the hole in my soft palette (issue #1 above). The Mayo Clinic is doing some leading edge work with Transoral Robotic Surgery for Oral Cancer. I plan to contact them as well as my own cancer center to explore options in this area. Second, I'll be reaching out to the physicians noted in the above article to explore the appropriateness and possibility of a device and operation similar to the one described in the article. This could address above issues #3 and #4. Issue #2, patching my epiglottis, is very unique to my particular situation. For that, I'll consult with my network of health care providers.

Although I began focusing on this set of potentially corrective actions yesterday, I view the exploration of this taking place over a six month time frame. Hey, Rome wasn't built in a day and the same can be said for what it might take to address my swallowing disorder.

Take care everyone.

Ed

The Cancer Sleeper Cell

2010-10-31T11:27:00.001-05:00

I continue to read about cancer; my type of cancer and cancers in general. I have four primary sources: 1) The daily Wall Street Journal, 2) The Sunday New York Times, 3) friends/family who send me articles, and 4) Google alerts. For those not familiar with Google alerts, it is a Google feature which allows one to set up specific searches to run continuously, daily, or weekly for subjects in which one has an interest. This is where I find most of my cancer-related reading materials. For more information on Google Alerts, just google it.

Today's Sunday New York Times Magazine section had a fascinating research-oriented articles on cancer stem cells, "The Cancer Sleeper Cell." It's a long article, but provided added insight into my understanding of how important it would be to fighting relapses if one could identify, isolate, and destroy the cancer stem cell. What the article highlighted for me was that researchers believe that only one bad cell in a million bad cancer leukemia (a blood cancer) cells is a stem cell which can cause a relapse. The hypothesis being that if they can kill that one cell in a million, they can stop the cancer from relapsing. They were able to take this finding and apply it to various solid tumors. It also raised other important questions about what defines a cure and how to measure a treatment's success.

I was able to Google the article and the link is...

http://www.nytimes.com/2010/10/31/magazine/31Cancer-t.html

For those that are interested, enjoy this somewhat intellectually challenging reading. Take care everyone.

Ed

Cutting Time and Cost in the Clinical Drug Approval Process Cycle

2010-10-11T15:59:00.004-05:00

In my readings about and discussions with cancer researchers, it is clear that the cost of bringing a new drug to market (almost one billion dollars) and the elapse time of 5 plus years at minimum is costing countless lives and untold billions of dollars. The following article printed in the WSJ on 10/2/10, "A New Rx for Medicine" caught my attention.

http://online.wsj.com/article/SB10001424052748703882404575520190576846812.html#articleTabs%3Darticle

The claim is that through personal genetic understanding and this novel approach to testing multiple drugs simultaneously, they can learn as much in 6 months as would be possible to learn in 5 years under current standard testing protocols. To me, this approach is a breakthrough. For ease of reference, the text of the article follows. Be forewarned, it is a long article, but well worth reading.

A New Rx for Medicine

Fed up with slow drug trials, cancer patients and doctors are testing a fast track to personalized treatments.

When 37-year-old Kerry Landreth discovered a lump in her breast last April, she was told it would take three weeks to get a doctor's appointment to have it checked.

"I don't do three weeks," she recalls saying. "How about today?"

By the end of the day, she had talked her way into a doctor's appointment, a mammogram and a biopsy to determine whether the suspicious lump was a tumor. A few days later came the diagnosis: stage 2 invasive ductal breast cancer, a particularly aggressive form of the disease. When a surgeon recommended a double mastectomy, she decided to consider other options.

Now, Ms. Landreth, a vice president at the San Francisco office of a Wall Street investment bank and the mother of two young children, is among the first participants in a novel clinical trial that is similarly impatient with the status quo in cancer treatment.

The trial, called I-Spy 2, employs several innovative approaches to improve the notoriously slow and inefficient process of developing new cancer drugs. Using the latest advances in genetics, I-Spy 2 aims to match experimental drugs with the molecular makeup of tumors most likely to respond to them. And it tests multiple drugs at once, with the intent of getting the most effective ones into late-stage trials more quickly.

The goal is to reverse a dismal record, in which 60% to 70% of late-stage cancer studies fail, and to dramatically reduce the time and cost required to get promising new drugs to the market. Currently it can take $1 billion, thousands of patients and more than a decade to gather the evidence necessary to approve a new cancer drug.

Kerry Landreth just finished her final round ofchemotherapy.

"Predictability is the Holy Grail here—being able to identify promising drug candidates early and figuring out who they might work in," says Janet Woodcock, director of the Center for Drug Evaluation and Research at the U.S. Food and Drug Administration.

The new trial draws from a growing body of research showing that the genetic makeup of tumors varies widely even among patients diagnosed with the same cancer. Some of these molecular traits, called biomarkers, make a tumor vulnerable to a specific medicine, while others may thwart a drug's effect.
A big part of the problem with conventional trials is that they essentially take all comers. Researchers know many participants won't benefit from the treatment. Those who don't respond can cause a drug to fail even though a significant minority of patients might benefit.

"Unless we do something different, people are going to give up on doing trials" for cancer, says Laura Esserman, director of the breast-care center at University of California, San Francisco, and co-leader of I-Spy 2.

The study focuses on women with aggressive breast cancers that have not spread to other organs. It aims to collect information about experimental drugs that would then enable drug companies to design leaner, faster late-stage trials that enroll only patients whose tumors had a high probability of responding to the treatment. Those trials, called phase III trials, provide critical data used in determining whether a drug will be approved.
"The vision is a 300-patient phase III trial instead of a 3,000-patient trial, with better results," says Don Berry, head of Quantitative Sciences at M.D. Anderson Cancer Center in Houston and co-leader of the study.

I-Spy 2's effort to bring much higher standards of productivity to cancer-drug development is inspired partly by Dr. Esserman's experience at business school. In addition to her surgical training, she has an MBA from Stanford University, where she learned about the rapid pace of innovation in high-tech industries. She was particularly influenced by the idea of what Intel Corp. chairman Andrew Grove calls "knowledge turns"—breakthroughs that have led to annual advances in microchip technology and an ongoing revolution in the performance of products like personal computers.

In the development of cancer drugs, by contrast, "knowledge turns" may take 10 or 15 years. Typically treatments are first studied in metastatic patients—for whom cancer has spread from the original tumor site to other parts of the body—who didn't benefit from standard therapies. Even when drugs succeed, benefits often are limited to a few extra weeks or months of life. Then it takes several more years to test successful drugs in early-stage patients, for whom effective treatments could mean a cure.
"We have 45,000 women dying each year of breast cancer," Dr. Esserman says. "We should be compelled to move faster."

About 3½ years ago, she joined forces with Dr. Berry at M.D. Anderson, an expert in a new approach to clinical trials called "adaptive design," to plan I-Spy 2. Unlike conventional trials, in which no one sees results until the end, "we look at the data right away," Dr. Berry says. What is learned in the early going helps to determine which drugs are assigned to patients later in the study, speeding the emergence of winners and losers.

The trial incorporates other new approaches. It's currently testing five drugs at once from three different companies. As compounds graduate to phase III studies or are winnowed out for lack of significant benefit, new candidates are cycled in, sparing the cost and time to mount separate trials. Up to 12 candidates will be screened over the course of the study.

In addition, participants get a six-month course of chemotherapy before having an operation to remove their tumors. In many studies, surgery is performed first, followed by chemotherapy and radiation, reflecting a long-standing preference to quickly remove tumors before beginning drug treatment. As a result, it can take three to five years to determine whether a drug is working, as researchers wait to see if the cancer recurs. Whether surgery occurs before or after chemo does not affect long-term outcomes.

In I-Spy 2, researchers use an MRI to evaluate a tumor's response to a drug early in the trial and get a definitive answer at surgery. "All of a sudden I've taken a five-year learning curve and shortened it to six months," Dr. Esserman says.

Ms. Landreth's ordeal began with a heavy sensation in her left breast that led her to discover the lump. It seemed to come out of nowhere and felt as big and hard as a marble. The news that she had cancer came while she was on a business trip to Los Angeles. "It was a shocker," she says.
She didn't reject out of hand the surgeon's recommendation of a double mastectomy, but as she and her husband, Creighton Reed, cast a net among friends for advice, Dr. Esserman's name kept coming up. They were taken with her on their first meeting.

"She sweeps into the room like this Fleetwood Mac figure," Ms. Landreth says, referring to Dr. Esserman's resemblance to the group's singer Stevie Nicks. "There's no B.S. She cuts completely to the facts. She gives you a hug at the end. You leave thinking, 'All right, I can do this.'"

A key feature of the study is a molecular analysis that determines whether the participants' tumors are positive or negative for estrogen, progesterone and the Her2 protein—the basis for putting patients in one of 10 biomarker categories.

Every patient gets 12 weekly treatments with the standard chemotherapy taxol, followed by four biweekly infusions of the standard drugs Adriamycin and Cytoxan. A precursor study called I-Spy 1 showed that 30% of patients who got that regimen saw their tumors disappear completely.

About 80% of patients are also randomly assigned to one of five experimental agents (from Abbott Laboratories, Amgen Inc. and Pfizer Inc.), given with the taxol treatments. Each drug targets a different molecular pathway affecting the growth and proliferation of tumors.

Tumor response is assessed from MRIs and at the time of surgery after chemo is completed. The associations between tumor response and patient biomarkers among the early participants will influence how subsequent patients are assigned to the treatments.

"The goal is to pair drug and biomarker signatures and graduate them into a small phase III trial that has gotten rid of the subset of patients that don't benefit," says Dr. Berry.

There are challenges. Though biomarkers are a promising predictor of a drug's effectiveness, tumor response to a drug can vary widely despite biomarker status. Doctors say that more evidence is needed linking biomarkers to long-term outcomes.

Eric Winer, the director of breast oncology at Dana-Farber Cancer Institute in Boston, is not involved with I-Spy. He calls it "a very good trial," but he wonders if the bar is set too high. "We have to be very careful not to toss away drugs prematurely based on their failure to pass this screen," he says.

The bar is high, Dr. Esserman acknowledges, but the study isn't after incremental improvement. "This trial will say who are the big winners," she says.

Even if I-Spy 2 succeeds in showing that compounds have a high probability of success in small late-stage studies, it isn't clear yet whether or how the FDA's regulatory system would then enable faster drug approval. "That's our next step," Dr. Esserman says.

The study, to cost $25 million over five years, is sponsored by the Biomarkers Consortium, a public-private partnership managed by the Foundation for the National Institutes of Health. It includes representatives from the National Cancer Institute, the FDA and the pharmaceutical industry. Funders include the Safeway Foundation, UCSF, Quantum Leap Health Care Collaborative and several drug companies. So far, about 20 patients are enrolled, with the expectation that about 800 will participate at some 20 medical centers across the U.S.

Ms. Landreth was assigned to one of the experimental drugs and began treatment on May 18. By the second week, a physical check of her tumor suggested it had shrunk notably after just a single treatment. In one of what became weekly email updates to friends, she wrote: "I have always liked to get good grades, so the nerd in me was fully flourishing when the cancer nurse said she was 'over the moon' about how I'm responding to the drugs."

The next Tuesday, as she awaited her third round of chemo, she wrote: "I got in trouble with my chemo nurse for trying to tough it out this weekend. I didn't think that a 70 min walk, 18 holes of golf (I broke 100) and a little too much heat + a total failure to use the nausea drugs would cause a problem.... oops!" The result, she wrote, was almost unremitting vomiting for 36 hours.

But, she added, the tumor had shrunk dramatically again.

Later that week, an MRI confirmed the progress. After just three weeks, her tumor had shrunk more than 50%, a strong predictor, Dr. Esserman told her, that the tumor would be gone by the end of chemotherapy.
Still, the cumulative effect of the chemo exacted a toll on Ms. Landreth. She lost her hair, shaving it all off just days before her 37th birthday. Frequent nausea posed a persistent challenge to her energy and appetite. At one point, Hope Rugo, her oncologist, warned that she'd lost too much weight, information she disclosed in an update titled, "Bring on the guacamole."

By week eight, her tumor was the size of a watermelon seed, compared with a golf ball the day she enrolled. At week 12, it was the size of a sesame seed. Her medical team was ecstatic. "There's nothing like hearing them cheer," she says.

Not everyone sees tumors melt away. Inne Harry-Ogaree, 54, who entered the trial at about the same time as Ms. Landreth, had her tumor grow despite treatment with taxol and an experimental drug. She was switched to a more standard regimen, which has shrunk the tumor by more than 50%. "It hasn't been easy," Ms. Harry-Ogaree says. "But I have a positive attitude toward my treatment and my care."

Ms. Landreth's final chemo session was last Tuesday. Under the study protocol, she'll undergo surgery in November. The actual status of her tumor won't be known until then.

Three weeks into the trial, she got the results of a test for mutations in the BRCA1 and BRCA2 genes. Dr. Esserman suggested the test because of a family history of ovarian and prostate cancers. The test was positive for BRCA2, putting Ms. Landreth's lifetime risk of another bout with breast cancer as high as 85%; for ovarian cancer, it's 30%.

She knew immediately what her surgical plan would be: the double mastectomy that she had initially resisted. She plans to have her ovaries removed as well.

Ms. Landreth's results will go into the trial database and could affect which other patients are assigned to the drug. If it turns out, as Dr. Esserman expects, that her tumor is gone, she is unlikely to need radiation.
In her email update early this week, she expressed "high hopes" that surgery would reveal her to be "cancer-free." Reflecting both the challenge of the surgery ahead and the battle she has already fought, she wrote: "I have to remember that after 16 rounds of magic poison it is going to take awhile to bounce back, no matter how fierce my determination. Churchill apparently said, '[If] you are going through hell, keep going!'"

Write to Ron Winslow at ron.winslow@wsj.com

Another Potential Weapon Against Head and Neck Cancer

2010-08-03T04:19:00.003-05:00

Herpes - the gift that keeps on giving. A phase I/II study completed by BioVex was just published in ASCO (American Society of Clinical Oncology). By injecting a genetically altered form of the Herpes virus directly into the lymph nodes of 17 patients with head and neck cancer in combination with Cisplatin and radiation, head and neck tumour shrinkage could be seen on scans for 14 patients (82.3%), while 93 per cent of patients had no trace of residual cancer in their lymph nodes when subsequently surgically removed. After an average follow-up time of 29 months (19 to 40 months), 82.4 per cent of patients remained alive. Only two of 13 patients given the top virus treatment dose relapsed, and no patient had recurrent loco-regional disease.

Dr Robert Coffin, Founder and Chief Technology Officer, for BioVex, said: “Up to half of patients given the current standard treatment of chemotherapy combined with radiotherapy typically relapse within two years, following which the prognosis is grim, so these results compare very favorably. This, combined with the very high complete pathological response rate indicates that OncoVEX may provide significant additional clinical benefit to chemotherapy and radiotherapy alone, hence our decision to move directly to a pivotal Phase III trial."

Speaking from a personal experience perspective, this is a potential game changer. After 36 IMRT radiation treatments which ended in July of 2005, they found live squamous cell carcinoma cells in 2 of the 17 lymph nodes removed from my left neck. Within 18 months following the radiation treatments, I had 4 local recurrences which lead to five surgeries one of which was a 12 hour salvage surgery which has left me permanently disabled. I spent almost two years in bed due to the debilitating effects of nine different chemotherapy regimens. All of this saved my life, but the side effects, using Dr. Coffin's word, have been grim. I am currently in remission and have had no evidence of disease for 34 months. I continue to take a maintenance chemo drug and will do so as long as the side effects from that drug are minimal. I have no proof of this, but I suspect the maintenance drug is keeping my cancer from returning.

I wonder at times how my life would have been different if the above treatment had been available to me 5 years ago. This treatment along with others I have written about recently gives me hope that others will not have to travel down my path. For those of you wondering, I was neither a smoker or a drinker. My disease was not related to the HPV virus. Where it came from is a mystery.

Here are two links to articles on the above clinical trial.

http://www.businesswire.com/portal/site/home/permalink/?ndmViewId=news_view&newsId=20100802005515&newsLang=en

http://www.aolhealth.com/2010/08/02/herpes-a-new-weapon-against-cancer/

Take care everyone.

June 30 2010

2010-07-01T20:15:00.000-05:00

Having had a little literary fun and a trip down memory lane in my last post dated April 29 2010, it is time to look to the present. I had my quarterly exam at the cancer center on June 30th. It began with blood work, a chest x-ray, and a head & neck CT scan. I visited with a speech therapist to discuss tongue exercises which may help with swallowing issues. Next I met with my oncologist and his physician assistant (PA). They had the finalized radiology report back from the CT scan I had two hours earlier. ALL CLEAR!!!! Both my doctor and his PA did a thorough exam. Again, all clear. That makes it 32 months with no evidence of disease and 6 months for clinical remission. I'm continuing on the daily maintenance chemo drug as the side effects are mild and the risk of a recurrence is still high. But, the further out I get, the smaller the odds of a recurrence. So, all good news. No qualifier.

On a random topic since I have your attention, I discovered a new source of entertainment on the world wide web. For those of you that enjoy music, give http://www.pandora.com/ a try. It is completely free and tailored to your specific tastes. Plug in a few artists whose music you enjoy and it does the rest. Non stop streaming music 24 x 7.

Take care. Ed.

My 5 Year Cancerversary

2010-04-29T19:14:00.006-05:00

5 years ago today a doctor walked into my exam room and said, “you have cancer.” This blog entry is about that experience. It covers April 28th and 29th of 2005. Before jumping into that event, I looked up the 5 year survival rate. One website (see reference at bottom of post) put the rate for those diagnosed with late stage head & neck cancer at 27%. It feels pretty good to not be in with the 73% of the people who are no longer with us. Although the cost physically, mentally, and financially to me and my family and friends has been high, I take some solace in beating the odds.

A few blog entries ago I had written that I was writing a book on my cancer journey. I have since abandoned that idea as I did not find it a compelling enough story. I did however crank out 100 pages of pretty solid text before coming to this conclusion. My goal was to write a story that gave the reader a true non fairy tale feel for what it is like to walk in the shoes of someone with cancer. The following are 4 pages from my writings that you may find insightful. It begins with my first exposure to the head & neck cancer clinic at M. D. Anderson.

April 28 2005
===========
The patients in the head and neck cancer unit waiting area were generally older than me, but not all of them. One big difference between here and the Sarcoma unit was the evidence of massive facial deformities. An older woman whom I guessed to be in her mid 70s had a piece of gauze straight across the front of her face between her eyes and her lips where her nose should have been. When she turned sideways and the sun from the window backlit her head I could see a straight plain where her nose used to be. This disturbed me. There were people with blue and red markings on their face with indelible marker. There were multiple patients with tracheotomies. I had never seen so much misery in one place. These were images out of a horror movie.

My wife and I stood until two chairs were vacated. After a few hours my name was called. We both got up and went into the clinic. They took my vital signs: weight, blood pressure, and temperature. We were told to go back into the waiting area until an exam room opened up. Every time we asked how long we would be waiting, we were told “you will be seen shortly.” We waited another hour before being brought back to an exam room. Here again we were asked to wait. “How long?,” I asked. We were told the doctor would see us shortly.

A physician’s assistant joins us in the exam room. She examines me and takes down notes on my background. Yes, I smoked during high school. No, I haven’t smoked in over 30 years. Occasionally, I have a glass of wine, nothing else. She finishes with her note taking, says the doctor will be in shortly and leaves. After more waiting my doctor enters the room. He asks similar questions as those asked by his physician assistant. It is late in the day. We had originally come to the Cancer Center for a scheduled early morning Sarcoma exam and now here it was pushing 5:00 P.M. He examines my neck visually and by feel. He maneuvers an endoscope down through my left nostril which gives him a clear view of my pharynx, upper esophagus, upper windpipe, and vocal cords. He asks me to say “eeeeeee” a few times. He removes the endoscope without difficulty. He tells me to open wide and reaches in as far as his gloved right hand can reach and feels the back of my throat and the base of my tongue with his finger. I gag. It is unpleasant. I ask him what he is seeing and feeling. He provides me with no verbal assessment on one hand or assurances on the other. He says he would like to schedule me for a Fine Needle Aspiration (FNA) and to do it as soon as possible, would tomorrow work for me? We learn that he is from Pittsburgh. My wife is from Pittsburgh and I lived and went to undergraduate and graduate school there. This gives us an instant mini-bond. We’re all Steelers fans. Go Steelers. He has me scheduled for a FNA the following afternoon.

We leave there. My wife is under the impression that I have cancer. I am still under the belief that whatever is wrong with me may be cancer, but it could be something less serious. After all, it is just a few swollen lymph nodes. We meet a friend and her spouse for drinks at a restaurant near our home and neither my wife nor I mention how we spent the day.

April 29 2005
===========

I drive down to the Cancer Center the next day, park, and walk the quarter mile to the Fine Needle Aspiration facility. There is a small waiting room and no other patients are there. I check in with the clinic receptionist and my name is called quickly. I’m led to an ordinary looking exam room. There are a few chairs, an exam table with the white paper pullover to help keep it clean between patients, cabinets underneath and above the counter top. There are a few medical exam devices in the room, but nothing out of the ordinary. A female Asian doctor comes in and introduces herself. She feels and gently palpates my neck and lymph nodes. She tells me that she is going to take sample fluid from multiple spots in each swollen lymph node and examine them. She retrieves a huge hypodermic syringe. The needle is about 4 inches long and the syringe can hold 20 milliliters of fluid. I ask if it will hurt. She says a little, but not too bad. I sit in one chair; she sits in the chair next to me. She pokes the needle slowly into my swollen lymph node. She draws some fluid. She repeats this 3 or 4 times. The syringe is almost full. She excuses herself from the exam room. She returns a few minutes later with a new syringe and wants a few more samples. I am of course thrilled because her fluid extraction shrank the size of my lymph nodes by 50%. I asked her to take all the fluid or as much fluid as possible. She repeats her exercise: stab, pull plunger, remove syringe, put syringe in a vertical position with the needle pointing up, push plunger in until all the air is removed, and then repeat. I continued to be thrilled. My swollen lymph nodes were practically gone, my face and neck contour was almost back to normal; it hadn’t been this way for over 2 months. She had succeeded in 10 minutes what a month of antibiotics had been unable to accomplish. She excused herself again.

I liked her. She was nice and the procedure didn’t hurt too badly. She returned two minutes later. She said, “You have cancer.” I was stunned! I had prepared myself for this mentally, but somehow I did not expect it to play out this way. I thought she might come back into the room and say, “we’d like to schedule you for some additional tests” or “my findings were inconclusive.” That’s not what happened. What happened is that in the two minutes she was out of the room, she squirted some of the fluid on a microscope slide, slid the slide under a microscope, looked at it, and quickly and unequivocally came to the conclusion which she unabashedly shared with me in three life-altering words, “you have cancer.” I wasn’t prepared for this. Sure, I liked how my lymph nodes were no longer swollen, but I HAD CANCER. I did not know what to ask, or where to begin. So, I asked if my lymph nodes were now better. How dumb is that? She said they would continue to swell as they fought the cancer. I asked her what type of cancer I had. She was as matter of fact when answering as the women behind the deli counter when you ask about a type of cheese or salami. She said, “You have squamous cell carcinoma.” In asking what I should do next, she said she would send her findings to my doctor and he would be in touch with me. There were a dozen questions I should or could have asked, but I was in a state of shock. I had watched my mom suffocate from lung cancer less than 4 years earlier. She went from appearing perfectly healthy to being dead in 6 months. My siblings, dad, and I spent the last week of her life with her. It was terrible to watch someone you love go from active tennis player to bed-ridden paraplegic in a matter of months.

What was going to happen to me? I was scared. I had cancer.

====================
Reference
http://emedicine.medscape.com/article/1289986-overview

All Quiet on the Western Front

2010-04-02T16:44:00.002-05:00

The literal translation of that title is "Nothing new in the West" with the West being the war. It was a routine dispatch used by German soldiers during World War I.

On March 31st I had blood drawn and clinic visits with my oncologist and surgeon at my cancer center. They did not see anything suspicious, said I looked well, and will schedule me for a follow up in 3 months. That visit will involve a CT scan of my H&N, maybe my chest, and an x-ray. I have been taking a daily chemo pill, Tarceva, for 28 months. My oncologist thought it best for me to continue with this treatment. This all leads back to the above title, there is nothing new with my own personal war on cancer. I'm still in clinical remission having had no evidence of disease for 30 months.

While at the cancer center, I was able to talk to my speech therapist who scheduled me for a modified barium swallow test later that same day. The results this time were different than the test last August. I'm 100% convinced that my anatomy had not changed. The difference was the skill of the therapist performing this test. The test showed some constriction in my esophagus and felt a consult with a gastrointestinal doctor (and a possible esophageal dilation procedure) may yield some progress in my ability to consume additional types of food. I have been living off of Boost nutrition drinks for over 3 years now. It's good, but not that good. I'm encouraged by this latest development.

I was also able to have a great catch up with a friend that works at the cancer center. So, all-in-all a pretty good day.

Stay well and take care.

Ed

Nothing New in ex-Cancerville

2010-03-24T20:03:00.000-05:00

One week from today, on March 31 2010, I go in for a quarterly check up with my oncologist and an annual check up with my surgeon. I'll have blood drawn for testing at about 6:00 AM and am scheduled to see both doctors later in the morning. I am not scheduled for any scans and I don't feel any abnormal growths (e.g., lumps or bumps) in my body, so I'm hoping to skate through there without incident (i.e., cancer detection or other concern).

Take care everyone.

With Cancer, Let’s Face It: Words Are Inadequate

2010-03-16T10:04:00.001-05:00

The above title is from an article published in the New York Times Health section today by Dana Jennings. I found it well written and reflected many of my own thoughts since this journey began.

The following is a link to the article and below that, for ease of reference, the article itself.

http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/

With Cancer, Let’s Face It: Words Are Inadequate
by Dana Jennings
March 15 2010

We’re all familiar with sentences like this one: Mr. Smith died yesterday after a long battle with cancer. We think we know what it means, but we read it and hear it so often that it carries little weight, bears no meaning. It’s one of the clichés of cancer.

It is easy shorthand. But it says more about the writer or speaker than it does about the deceased. We like to say that people “fight” cancer because we wrestle fearfully with the notion of ever having the disease. We have turned cancer into one of our modern devils.

But after staggering through prostate cancer and its treatment — surgery, radiation and hormone therapy — the words “fight” and “battle” make me cringe and bristle.

I sometimes think of cancer as a long and difficult journey, a quest out of Tolkien, or a dark waltz — but never a battle. How can it be a battle when we patients are the actual battleground? We are caught in the middle, between our doctors and their potential tools of healing and the cell-devouring horde.

We become a wasteland, at once infested by the black dust of cancer and damaged by the “friendly fire” of treatment. And ordinary language falls far short of explaining that keen sense of oblivion.

As a patient, it’s hard to articulate how being seriously ill feels. In a profound way, we are boiled down to our essential animal selves. We crave survival. We long for pain to end, for ice chips on parched lips, for the brush of a soft hand.

It pays to have a positive outlook, I think, but that in no way translates to “fighting” cancer. Cancer simply is. You can deny its presence in your body, cower at the thought or boldly state that you’re going to whup it. But the cancer does not care. You’re here, the cancer has arrived, and the disease is going to feed until your doctors destroy it or, at least, discourage it.

Then there’s the matter of bravery. We call cancer patients “brave,” perhaps, because the very word cancer makes most of us tremble in fear. But there is nothing brave about showing up for surgery or radiation sessions. Is a tree brave for still standing after its leaves shrivel and fall? Bravery entails choice, and most patients have very little choice but to undergo treatment.

Which brings me to “victim.” I didn’t feel like a victim when I learned that I had cancer. Sure, I felt unlucky and sad and angry, but not like a victim. And I have no patience for the modern cult of victimology.

Victim implies an assailant, and there is no malice or intent with cancer. Some cells in my body mutinied, and I became a host organism — all of it completely organic and natural.

And what are we once treatment ends? Are we survivors? I don’t feel much like a survivor in the traditional (or even reality TV) sense. I didn’t crawl from a burning building or come home whole from a tour of duty in Afghanistan.

I’m just trying to lead a positive postcancer life, grateful that my surging Stage 3 cancer has been turned aside, pleased that I can realistically think about the future. I’m trying to complete the metamorphosis from brittle husk to being just me again.

The phrase “salvage radiation” is not used much anymore, but when one doctor said it in reference to my treatment, it made me feel less human and more like a “case.” It meant I needed radiation after surgery, because the cancer was more aggressive than expected — I needed to be “salvaged.”

I felt as if I had been plopped into some screwy sequel to “Raise the Titanic!” — time to raise the U.S.S. Jennings, lads. Or maybe I was going to get picked up by a scrap-metal truck and then get zapped at Frank’s Junkyard, laid out in the back seat of a 1960 Ford Fairlane.

And I’m still troubled by this sentence, which I’ve heard many times: “Well, at least it’s a good cancer.” It’s usually applied to cancers that are considered highly treatable, like those of the prostate and thyroid.

Most people mean well, but the idea of a good cancer makes no sense. At best, the words break meaninglessly over the patient. There are no good cancers, just as there are no good wars, no good earthquakes.

Words can just be inadequate. And as we stumble and trip toward trying to say the right and true thing, we often reach for the nearest rotted-out cliché for support. Better to say nothing, and offer the gift of your presence, than to utter bankrupt bromides.

Silences make us squirm. But when I was sickest, most numbed by my treatment, it was more than healing to bask in a friend’s compassionate silence, to receive and give a hug, to be sustained by a genuine smile.

Strangely enough, although cancer threatened my life it also exalted it, brought with it a bright and terrible clarity.

So, no, cancer isn’t a battle, a fight. It’s simply life — life raised to a higher power.

Roger Ebert

2010-02-24T17:43:00.000-06:00

Esquire magazine wrote a great article on Roger Ebert, the well known film critic. He had thyroid cancer which spread to his head and neck. It is a beautifully written piece. Here’s a link to the article...

http://www.esquire.com/features/roger-ebert-0310

The following is an excerpt from the article on page 7 and is so well written by Roger Ebert that I’m including it here for ease of reference…

Ebert is dying in increments, and he is aware of it.

From Roger Ebert... I know it is coming, and I do not fear it, because I believe there is nothing on the other side of death to fear, he writes in a journal entry titled "Go Gently into That Good Night." I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. What I am grateful for is the gift of intelligence, and for life, love, wonder, and laughter. You can't say it wasn't interesting. My lifetime's memories are what I have brought home from the trip. I will require them for eternity no more than that little souvenir of the Eiffel Tower I brought home from Paris.

All for now, stay healthy and take care.

Ed

Advances in DNA Sequencing and the Impact on Cancer Treatment

2010-02-19T11:00:00.002-06:00

Johns Hopkins University's Kimmel Cancer Center Researchers took a novel approach in detecting cancer in patients. Instead of looking for tiny DNA changes within cells, they looked for large sections of the genome of tumor cells which have been rearranged. The DNA of tumors varies genetically from that of normal tissue, and the rearrangements are essentially a fingerprint of the cancer.

The findings suggest that by testing blood for this fingerprint, doctors will be able to learn whether a patient treated for cancer is free of disease or needs additional or more aggressive care.

Here’s a link to the article…

http://online.wsj.com/article/SB10001424052748704269004575073640581947242.html?mod=djkeyword

What makes this so important to me and millions of others in remission is the establishment of a clearer path for how long we continue maintenance therapy. To help put this in perspective, my maintenance therapy runs into the five figures annually and there is little evidence based guidance on how long this should continue. As long as this therapy is not harming me, the risk of a head and neck cancer recurrence (in pain, suffering, and dollars) far outweighs the cost of continuing the current maintenance regimen. I suspect there are millions of others in a similar situation.

The above article states that advance in the cost of sequencing a patient's entire genome has fallen sharply—to less than $10,000 now from about $1 million three years ago. Experts predict that the cost will soon get to about $1,000, potentially making it affordable for medical centers to routinely run the genome of patients with cancer and other diseases.

In our need as a nation to reign in health care costs while balancing the quality of care, this has the potential within the next 5 years to begin saving billions of dollars, yes that’s billions, without sacrificing health care quality.

Stay healthy and take care.

Ed

“Cancer cure” or “I Am Legend.” Time will tell

2010-02-09T08:09:00.002-06:00

A friend sent me an article this past weekend on a new drug in a phase II clinical trial for squamous cell carcinoma of the head and neck (basically head and neck cancer). The drug is Reolysin and is owned by Oncolytics Biotech (ONCY) based in Alberta Canada. It is nearing completion of a phase II trial for head and neck cancer and has shown a positive response on 42% of the patients compared to 10% in the control group.

Reolysin is derived from a virus. According to this article, the virus is harmless to healthy human cells. One of the primary issues with chemotherapies is targeting the cancer cells while leaving the healthy cells alone. Cells have pathways and scientists and cancer researchers have been using different cell pathways to specifically target cancer cells.

This drug is attracted to the Ras pathway which is turned on in many cancer cells and turned off in healthy cells. Reolysin is infused into the body daily over a few day time period. The virus enters the cancer cells via the Ras pathway, multiplies, and overwhelms the cell until it dies leaving all healthy cells alone. The virus dies along with the cancer cell. This is pretty remarkable stuff.

The success of the phase II trial is prompting active planning for a phase III trial. Here is a link to the article…

http://www.dailyfinance.com/story/this-virus-could-be-the-answer-to-cancer/19344145/

For those that did not see the movie "I Am Legend" staring Will Smith, the storyline is a cancer vaccine derived from a virus which turns 90% plus of the population into flesh eating zombies who are killing the remaining human race.

Stay healthy and take care.

Ed

Head & Neck Cancer Resources

2010-01-29T12:35:00.002-06:00

I spend my fair share of time on the www. I have come across two websites recently that have stood out above the fray. One is dedicated to head & neck cancer; the other is for a wide range of cancers.

The first is the Oral Cancer Foundation at…

http://oralcancerfoundation.org/

They have the most complete site dedicated to H&N cancer for everything from diagnosis to rehabilitation. The section on “Emotional aspects” and within that “Survivors – What Now?” is what caught my attention. Here’s a link directly to that section (it has 2 parts)…

http://oralcancerfoundation.org/emotional/survivors_1.htm.

Until one goes through this experience, it is difficult to fathom the impact it has on one’s psyche. This section resonated with me and confirmed that I am not overreacting to my current circumstances. I found it helpful and wanted to pass the information on to others.

The second site is CancerCompass at…

http://www.cancercompass.com/

They have an active forum (message board) section covering 35 different cancers. The direct link to this section on their website is…

http://www.cancercompass.com/message-board.htm

In reading the posts and responses for head & neck cancer, this site has quickly grown an active and knowledgeable community that has been there and done that. I can’t speak directly for the other cancers, but I doubt you will be disappointed. Again, it covers the gamut from diagnosis to rehabilitation. There are also caregiver perspectives.

Dealing with cancer is tough. But, these sites make it a bit easier.

Take care.

Ed

Quick Health Update

2010-01-05T15:51:00.006-06:00

Happy New Year 2010!

I had a blood draw, head & neck CT scan, and clinic visit with my oncologist on 12/30/09. My health remains stable. My doctor used a term in his follow up written clinic report with which I was not familiar. He said I was in "clinical remission." Up until this point, I had been in a state of "no evidence of disease (NED)." I can not find an exact definition of clinical remission, but I infer from my Internet searches that it means the following: as a result of my ongoing treatment, my disease is not detectable. He has left me on a daily chemo drug, 100 mg of Tarceva. There are limited guidelines as to how long I should continue this treatment, but since I am tolerating it well, the risk of a cancer recurrence outweighs the current side effects. My next scheduled visit is in three months.

As to my psychological state, I feel trapped, both physically and mentally. I could write about this, but for now, I'll leave it at that.

Take care and great health during this new decade.

Ed

December 13 2009 - It's my Cancer Anniversary

2009-12-13T21:34:00.014-06:00

Three years ago today on December 13 2006 I received terrible news of a major cancer recurrence. The CT scan showed five inoperable tumor hot spots in my throat and oral cavity. My surgeon suggested that the palliatative care unit was a reasonable option. That is a group most commonly known for helping to make you comfortable via pain management and psychological counselling but without treatment or the hope of a cure for your disease. At that time I had made major strides towards a recovery from an extensive surgery five months earlier and was considering going back to work. In addition to becoming a patient in the palliatative care unit, I also met with my oncologist and one week later began an endless non-stop regimen of different chemotherapies, one of which continues three years later as I write this blog entry. Last year and the year before on this date, I wrote about that day in 2006 and said that I hoped to be able to write about it again the following year. Well, as Jimmy Buffet named his nationwide tour last year, “The Year of Still Here.” Well, I’m still here too.

On the health front, I have been in a state of no evidence of disease (NED) for 26 months. That is remarkable. It has not been an easy three years. Long term chemotherapy is physically tough on my body. I have neuropathy in my toes and the balls of my feet, I’m constantly chilled, I have severe aches, pains, and cramps at times, and my muscle tone is less than it should be. I feel like I’ve aged 25 years physically in the last 3 years. I’m 57, but that puts me in the body of an 80+ year old. Plus, I have eating and speaking disabilities. I won’t address them in this blog entry as they have been addressed ad nauseum in past entries. I frequently ask myself, “Why go on?” “Why not just give up?”

The answer is: 1) because I’m stubborn and 2) I don’t think my purpose on this planet is yet complete. Plus, among the physical hardships, life is still good. I visited with 90% of every close friend and relative at least once this past year. We spent quality time together. Some of these people I had not seen since before I had become ill in April 2005. It was so good to see everyone and to see how well they are doing in their lives. If you are one of those 90%, please know how much once again I enjoyed our visit(s). I continue to try to shape my daughter into the grownup I hope she will become someday. We visited six Ivy League college campuses over her spring break. I’m currently teaching her to drive under the firm belief that I’ll do a more thorough job than she will get from a Driver's Education course. (My driving instruction is supplemented by an online driver's ed course.) I took two courses this year; one of which was on writing a non-fiction book held at Rice University, and the other was in analyzing a company’s financial statements at Lone Star College. The latter was a tough course, but I aced it. Although my body is compromised, my mind is still intact. I read some great books this year: The Snowball (a 900+ page authorized biography of Warren Buffet), The Big Rich, The Help, A Million Little Pieces, Nothing To Lose, Gargoyle, and many others. The course at Rice University gave me a finer appreciation for how tough it is write a great book. I began writing a book on my cancer experience. It is a long term work in progress.

People undergoing cancer treatment pass through different phases. I have passed through the period of intense treatment. The intense treatment phase lasted over two years. I do not intend to offend anyone who has been on active duty in a war zone in our Country’s armed services with my next statement, but I feel that intense cancer treatment is similar to being in the heat of physical battle. The enemy is cancer, the treatment is tortuous, painful, and physically and mentally exhausting, and one’s very existence is continually tested. In me it created symptoms similar to post traumatic stress syndrome (PTSD). With the help of a psychologist I have passed through that phase. I’m now looking with some optimism at how to make my best of the time left on this earth. I’m still looking to make a positive contribution. I volunteered to become involved in three worthy causes this year. I was accepted by none of them, but I’m keeping my eyes and ears open for good future opportunities. I hope to find something meaningful before my time runs out. Long term serious illnesses reinforce the reality of mortality.

On a more tactical note, I have my quarterly cancer checkup at the end of this month. I’ll have blood work, a CT scan of my head & neck area, and a visit with my oncologist. I currently feel okay physically. I also felt okay three years ago today when I got that terrible diagnosis. I hope my check up will be a non event. I do have some anxiety about it and will share the results with you all in January.

One last note before signing off… Cancer has also taught me how important love and hope is. I don’t know how to quantify that, but I do know that it plays a huge role in my life with my family and close friends.

Stay healthy and Happy New Year!

Ed

2009-10-08T09:27:00.003-05:00

I’ve become a Hypochondriac…

I wasn’t always a hypochondriac, but it is another side effect of my disease. Every ache and pain becomes a potential deadly form of cancer. 90% of the time I keep myself in check and wait until I have a clinic visit to share my concerns. For the most part, they are just that, concerns, not deadly diseases. In reading the following article from yesterday’s Philadelphia Inquirer, I had to laugh. Although the author is a 7 year survivor of breast cancer, she still recognizes each malady as her imminent cause of death. I don’t know if those who have not had a serious disease will find this humorous, but there are enough of us out there, that I’ll share the article here.

Take care everyone.

==================

The Philadelphia Inquirer
October 7, 2009

More than the sum of my medical records Cancer survivors need doctors to know their names.

By Missy Stein

October has arrived, and so has Breast Cancer Awareness Month, as it has come to be known since 1985. For me and others who have been affected by the disease, breast cancer is something we are aware of 12 months a year. For the rest of the world, designating this month provides an opportunity for special events, media attention, and bringing a number of issues related to breast cancer to the forefront. I have one that doesn't get much attention.

As a seven-year survivor of breast cancer, I am a cancer graduate. In other words, I've reached that stratospheric level where I have to visit the oncologist only once a year for an unceremonious checkup.

I recently switched from a doctor I had been seeing at Fox Chase Cancer Center for four years to a doctor at the University of Pennsylvania. My impetus was a letter I received after reaching the point where I had survived five years and was therefore no longer considered to be at high risk.

I had been seeing an oncologist regularly every six months, as is customary for a survivor who has finished treatment. Then, much to my surprise, not long before my first post-five-year annual appointment, I received a form letter from a nurse at Fox Chase. She informed me that I would no longer be seeing the doctor, and that my appointments would be with her from then on. And that was my last contact with Fox Chase, other than having the center transfer my records to Penn.

I recently had my second visit with my new, young, smart, spunky, talented doctor at the Rena Rowen Breast Center at Penn. And the best part was that she knew my name! I mean, she knew who I was without looking at my records.

She didn't ask me when my last mammogram was, because she actually remembered that I had bilateral mastectomies. She asked me about my husband and referred to the fact that he is a rabbi. And she told me that, within three weeks of my transfer to her, three other patients were referred to her for the same reason.

Yes, we are survivors, but for every ache and pain that another person would forget about after taking a Tylenol, we think we have cancer. During my annual visits, when the oncologist asks me if I've had any health issues since we last met, my joking reply is, "Yes, I've had elbow cancer and neck cancer, but I'm fine now."

When you are in the midst of breast cancer treatment, your doctors and nurses become a part of your life. The breast surgeon and plastic surgeon become friends you look forward to seeing, even if you have to sit in their well-decorated waiting rooms for more than an hour.

And if you go through chemotherapy, as I did, the oncologist and the oncology nurses are people you see several times a month, who comfort you when you think you just can't do it anymore, and who laugh with you when you recount the story of how, halfway through your conversation with the UPS guy, you realized you forgot to put something on your bald head before you answered the door.

They know about your frightened children, your crazy in-laws, and the friend who brought you dinner. I didn't realize how much I missed that until I walked out of my appointment with my new doctor that day. I guess I'd been worn down.

Seven years ago, when I had five small children, I gave it my all. I found the best doctors, and I went through a 14-hour surgery and six months of chemotherapy. I learned to be an advocate for myself in every aspect of my treatment, always rising to the challenge.

Over the past few years, though, I'd let my guard down. I'd settled for being just another medical record.

But those days are over. Today I want to say "thank you" to my new doctor for saying my name - not "Mrs. Stein," not "Melissa," but the same name that I introduced myself with when I walked into her office for the first time: Missy.

99% Great News

2009-09-21T14:47:00.001-05:00

I had a series of tests and visits at my cancer center today. It began with a blood draw at 6:30 AM, a chest CT with iodine contrast at 8:00 AM, and ended with an oncology clinic visit at 10:00 AM. I was done at 10:30 AM. The phlebotomist left me with a nice little gift… a black blood mark the size of a half dollar on the inside of arm where it bends at the elbow. It may take months for that to disappear. My chest CT was completely clear. Yahoo. My doctor saw no areas of concern during my physical exam. He looks for lumps and bumps, discoloration, tissue tone, etc. That makes it 23 months with No Evidence of Disease (NED). All of this is great news. I’m not sure who enjoys this more, my doctor or me. Needless to say, we’re both very pleased.

The other 1%. We talked about my continued use of the Tarceva. It’s a daily chemo pill and I’ve been on the maximum dosage of 150 mg for 21 months. Prior to the 23 months with no evidence of disease, I had my original cancer diagnosis and 3 recurrences in a 2 year time frame. He believes what I suspected he believed. The Tarceva is keeping my cancer from recurring. The drug side effects have been tolerable. As such, I will continue this treatment. The scary part here is, when will this drug stop being effective? No one knows. It could be days / weeks or it could be years. I’m so much better off than others, but this 1% is raining on my parade.

Take care everyone.

Upcoming Clinic Visit

2009-09-12T18:33:00.001-05:00

I’m scheduled for my first 3 month check up on Monday September 21st. My doctor decided that a CT scan of my chest is warranted. This is based on a note I sent to him regarding what I suspect is a pulled muscle in my left side that has not healed in 2 months. I thought he might start with an x-ray and then, if needed, move to a CT scan. This produces a high degree of anxiety… somewhat out of proportion to the actual pain. Now, only a clean scan will put my anxiety at bay.

June and July were terrific months for me. I was feeling great and saw a lot of friends and family. August and so far into September have not been as kind. Small aches and pains get in the way of enjoyment.

Today is the 9th anniversary of my mom’s death. She died of lung cancer at age 72. This too weighs on my mind.

Take care everyone.

Modified Barium Swallow Test

2009-08-14T20:24:00.003-05:00

Hi. I had my modified barium swallow test today. Given the phrase that a picture is worth a thousand words, a video must be worth a lot more. Here’s a 40 second clip of someone (not me) taking the test…

http://video.google.com/videoplay?docid=4375530805602416900

About 30 seconds into the clip you can see how the liquid being swallowed collects for a few seconds (just above the Adam’s apple), then a swallow, and then it goes down the esophagus. As a result of my radiation and surgeries, much of my tissue in the pharynx region (that’s between one’s mouth and esophagus) is fused and just doesn’t move properly. This causes some food and liquid to enter my airway (a.k.a. aspiration). There are techniques I have learned over the past 2+ years to minimize aspirating. This includes eating in a reclining position and holding my breath while swallowing. The therapist administering the test was surprised by how much reclining helped me reduce aspirating. She also felt I had mastered the breathing while swallowing technique. I was surprised to learn that even with all I do to minimize aspirating, I still do aspirate. I could see it live on the motion x-Ray. Although it wasn’t a lot, she feels I am at high risk for pneumonia. One of the best ways for me to avoid pneumonia is to stay active. I guess this is good advice for just about everyone regardless of the circumstance.

The esophageal dilatation that I wrote about in my last two posts will not do me any good. The problem is in my pharynx, not my esophagus, and can not be used to widen an area in my pharynx. I feel good about trying, but disappointed in the result. The therapist that performed this test is setting up an appointment where they will show me some new exercises for my throat that may help with swallowing. That will be in about a month during my next clinic visit to the cancer center.

Take care everyone.

Stem Cell Update

2009-08-11T19:44:00.004-05:00

Hi. This blog has provided me the forum to talk about a variety of subjects. On November 19 2008 I wrote a blog entry titled, “More Medical Marvels.” It talked about the use of stem cells in repairing a women’s bronchial tube. An article in today’s Wall Street Journal reported that for the first time researchers have developed the first fully functional three-dimensional organ replacement. They took stem cells with genetic properties of a tooth and implanted this “tooth germ” into a mouse’s empty tooth socket. Once the engineered tooth matured, after 11 weeks, it had a similar shape, hardness, and function as a regular tooth. This research was carried out at the Tokyo University of Science. The researchers suggested that using similar techniques in humans could restore function to patients with organ failure.

I’ve been a supporter of stem cell research for a long time. I don’t know where the above scientific breakthrough will take us, but the possibilities are staggering. Imagine a new heart, lung, kidney created from the patients own stem cells. It would almost certainly address the issues of tissue rejection, a lifetime of anti-rejection medications, and shortcomings in our current organ donor/recipient lottery process. I know I’m getting ahead of myself and a tooth in a mouse’s mouth is a long way off from a human heart, but the direction this is taking is damn exciting.

Here’s a quick update on the esophageal dilatation from my last post. My doctor’s office called today and asked if I could come in for the barium swallow test this Friday. So, it won’t be mid-September. This test could lead to an esophageal dilatation which in turn could lead to a better quality of life for me. It really would be a pleasure to eat again. I’m hopeful, but reserved in my hopefulness.

Take care everyone.

Esophageal Dilatation

2009-08-07T07:19:00.002-05:00

Hi. I’ve talked at some length in past blog entries about my permanent disabilities and the drive to get back to what I consider a pre-cancer normal state. I’ve more than less given up on eating any solid foods. 95% of my nutrition comes from Boost and skim milk. I’ve maintained my weight for two years on this diet. It’s not that I can’t eat; it’s more that the discomfort of eating outweighs the pleasure of eating. I can chew and taste to some degree, what I can’t do is swallow. Food always gets stuck in the back of my throat and I no longer have the muscles within my throat to move the food down my esophagus. I have to eat and drink in a reclining position and let gravity do most of the work. This keeps most liquid (and the little bit of food that I try to consume) out of my airway.

A head & neck cancer survivor with a similar history as myself informed me yesterday that she was going to have an esophageal dilatation performed on her in two weeks. Having never heard of this, I looked it up. Here’s a link explaining the procedure… http://www.gicare.com/Endoscopy-Center/Esophageal-Dilatation.aspx. It looks like it may have some potential benefit to me. In a nutshell, it stretches your esophagus. I contacted my surgeon last night via email who responded about 15 minutes later. He referred me to my speech therapist to have a modified barium swallow test run on me to determine if this procedure would be helpful. I’ve had 2 modified barium tests, but they were about 3 years ago. Basically, they spike some soft food (e.g., apple sauce) with a small dose of radiation and then watch via a live x-ray how the food works it’s way down your esophagus. You can watch live while the test is in progress. It is actually a pretty cool test. My surgeon also said that the esophageal dilatation procedure was common and routinely performed by gastroenterologists at the cancer center.

I’ve now contacted my speech therapist to request a test and am waiting to hear back. I’ve asked that the test be scheduled for mid September to coincide with my next trip to the cancer center. Once again, this brings some measure of hope to getting back to a more normal life. Not being about to eat is at best awkward in any eating situation. Plus, I just plain miss eating. The thought of being able to eat gives me hope.

Take care everyone.

Helping Cancer Patients Find the Meaning of Life

2009-07-14T19:27:00.004-05:00

Hi. The WSJ had an interesting article today on a new support group technique which focuses on helping cancer patients find the meaning of life after their diagnosis. It is modeled somewhat on the thought process used by concentration camp survivors during their captivity... finding strength and courage within the most dire of circumstances. Here's a link to today's article...

http://online.wsj.com/article/SB10001424052970203547904574276434196118914.html?mod=djkeyword

Good health to you all.

P.S. If you have trouble viewing the article, please send me an email and I'll send it to you.

Drug Cost Debate

2009-07-02T08:57:00.010-05:00

Before getting into today’s topic, a brief follow up from my last post. The radiologist’s report on my head & neck CT scan with contrast from June 23rd showed no evidence of disease. That makes it 20 months with no evidence of disease. Yahoo.

The Wall Street Journal had a terrific article on June 23 2009 titled, “Cost-Effectiveness of Cancer Drugs Is Questioned.” Here’s the link…

http://online.wsj.com/article/SB10001424052970203872404574258302761872972.html?mod=djkeyword

For those of you who have trouble with the link, I have included the entire article at the bottom of this posting for ease of reference. The article hit very close to home as I’ve used two of the drugs highlighted in the article. Erbitux (Cetuximab) is the drug to which I had a severe allergic reaction and Avastin is the drug which I credit (along with Tarceva) as the drug which has kept my cancer at bay (or maybe even eliminated it). It is also a very expensive drug and is the one with which I had a dispute with my insurance company.

There were a few points in this article that I’ve been thinking about over the past two years. As such, it may be a good idea to read the article before reading my thoughts.

1. These “expensive” drugs do actually work for some people. Although the average benefit (per the article) is an increase in longevity by 1.2 months, in my case it has been 2+ years. Cancer breakthroughs have been more akin to marginal improvements (like increasing the average miles per gallon in cars), than revolutionary breakthroughs. I don’t think I would be here today if it were not for these drugs.

2. The cost of bringing a new drug to market (see blog entry dated April 8 2009) averages almost one billion dollars ($1,000,000,000). The drug companies are not benevolent entities. They are in business, they have stock holders, and they are there to make a fair and reasonable profit. Among paying their employees, the revenue generated by these drugs funds research into better drugs. In some cases it allows larger drug companies with established drug distribution and marketing networks to acquire smaller innovative companies and spend the money required to move a drug through the arduous drug trial process.

3. Extending time in the last year of life is disproportionately expensive when compared to the years before the “last” year. The article says that this situation “is one of the thorniest questions facing lawmakers working on the overhaul of the U.S. health-care system.” Unfortunately, no one has a crystal ball. In my case, I may be one of the fortunate few where it looked like I was in the last year of life, but I wasn’t. I don’t have an answer here, but it’s an interesting question. Warren Buffet calls it the birthplace lottery. If I had been born in many other countries, these drugs would not have been available to me. Other articles I’ve read on the subject estmate last year of life health care cost at 25 to 30% of total Medicare costs. This percentage includes hospice care. Residents in some states cost twice as much than others. Given the magnitude of this cost and the differences, this should lead to further evaluation and recommendations for change at a strategy level.

Oh well, these are the things that clutter my mind and I thought I’d share them here.

Take care and good health to you all.
=====================================

Cost-Effectiveness of Cancer Drugs Is Questioned

By AVERY JOHNSON

Wall Street Journal – June 23 2009

The widespread use of expensive cancer drugs to prolong patients’ lives by just weeks or months was called into question by an article published Monday in the Journal of the National Cancer Institute.

Crunching data from published studies, the authors found that treating a lung-cancer patient with Erbitux, a drug that costs $80,000 for an 18-week regimen, prolongs survival by only 1.2 months.

Based on that estimate, extending the lives of the 550,000 Americans who die of cancer annually by one year would then cost $440 billion, they extrapolated.

How to control escalating spending on end-of-life care is one of the thorniest questions facing lawmakers working on the overhaul of the U.S. health-care system.

Some countries, like the United Kingdom, agree to pay for expensive drugs only if they meet a certain threshold of efficacy, but no such rationing exists in the U.S.

The use of costly cancer drugs to prolong patients’ lives was called into question by researchers

Other Big Sellers

In addition to Erbitux, which is co-marketed by Eli Lilly & Co. and Bristol-Myers Squibb Co., the authors questioned the cost-benefit calculus for other big sellers such as Roche Holding AG’s Avastin and Nexavar, which is co-marketed by Bayer AG and Onyx Pharmaceuticals, citing similarly limited survival data. The latter two drugs cost more than $34,000 for a standard course of treatment.

The authors, Tito Fojo, an oncologist with the National Cancer Institute, and Christine Grady, a bioethicist at the National Institutes of Health, called for changes in both the testing and practice of medicine, noting that more than 90% of cancer medicines approved in the past four years in the U.S. cost more than $20,000 for a 12-week course.

Drug makers said the article exaggerated the overall costs of their treatments because few patients are on them for extended periods of time.

They added that many patients qualify for financial assistance and that the high list prices of the drugs reflect the high cost of scientific innovation.

Actual Price of Drugs

Brian Henry, a spokesman for Bristol-Myers, said that the real-world price that patients pay for Erbitux is closer to $10,000 a month; the $80,000 figure that the article uses reflects a benchmark price known as average wholesale price that isn’t typically paid by anyone.
“The total cost of Erbitux therapy varies depending on the course of treatment for an individual patient. The course of treatment is determined by the type of cancer, stage of disease, line of therapy, dosing schedule and duration of treatment based on clinical data,” said Mr. Henry, who added that Erbitux isn’t approved to treat lung cancer.

Nonetheless, the authors said that drugs with marginal benefits shouldn’t be tested unless they can be sold for under $20,000 for a standard course.

They also urged oncologists to cease the widespread practice of prescribing medicines outside of their officially approved indications and to avoid trying new drugs with limited upside on patients who have advanced cancer.

They offered Great Britain as an example, where the government has capped spending at £30,000, or about $50,000, per quality-adjusted life year, saying that bench-marking care to a fixed amount wouldn’t compromise care or innovation.

“Many Americans would not regard a 1.2-month survival advantage as ‘significant’ progress,” the authors wrote. “But would an individual patient disagree? Although we lack the answer to that question, we would suggest that the death of a mother of four at age 37 years would be no less painful were it to occur at age 37 years and 1 month, nor would the passing of a 67-year-old who planned to travel after retiring be any less difficult for the spouse were it to have occurred one month later.”

Consumer Resistance

While some policy experts consider the rationing of health-care resources inevitable in the quest to control medical spending, many Americans have long resisted putting the collective fiscal good over their individual health.

“We can’t add on Mercedes-like drugs one after another and have every single patient cost the system phenomenal amounts of money,” said Eric Winer, chief scientific adviser to Susan G. Komen for the Cure, a breast-cancer advocacy group. “But we have to be careful not to slow down the process of drug development. Ultimately it is medical therapy that will make a huge difference in people’s lives.”

The debate is complicated by the fact that, in some cases, the drugs work very well.
“A drug like Erbitux is not very impressive when you look at the statistics, but for some it’s just remarkable,” said Robert Erwin, who heads the cancer advocacy group Marti Nelson Cancer Foundation. “How much does it cost for the person to have the opportunity to benefit, whether they get the benefit or not?”

Richard Heimler, 49 years old, is among the patients who has benefited from high-cost treatments. He was diagnosed with lung cancer five years ago. In January, he added Avastin to a regimen of other expensive drugs. He credits it with shrinking his tumors within two months of starting with the treatment.

“My strategy has been to stay alive until the next drug comes out, and then stay alive long enough for the next drug after that,” said Mr. Heimler, who lives in New York and was head of development for a nonprofit before retiring two years ago. “If my family and I can afford a drug, we’ll try it. It’s hard to put a value on a life.”

But for Roger Megerth, 73, prolonged treatment with Nexavar wasn’t worth it.

He started taking Nexavar last June after being diagnosed with kidney cancer, but the side effects—indigestion, bleeding in the mouth and intestinal problems—were mounting.

Soaring Prescription Bills

So were the bills. The retired teacher said his school district switched prescription-drug plans and his co-pay for a bottle of 30 pills jumped from $20 to $988.18. He put one month’s supply on his credit card and decided to forgo further treatment after that.
“I would’ve borrowed money and run out my Visa,” but the side effects weren’t worth it, said Mr. Megerth of Billings, Mont.

He said his disease is under control for now, but he is in considerable pain and needs a walker to move around comfortably.

A spokeswoman for Onyx said that 75% of patients on Nexavar spend $50 or less out of pocket for the drug and that patient-assistance programs are available to cover the remainder of its costs.

Quick Health Update

2009-06-24T12:26:00.004-05:00

Hi. I spent the morning at my cancer center. I left the house at 5 AM and was there before 6. I began with a blood draw at 6:25 AM, an IV inserted at 8:00 AM, a CT scan of my head & neck area at 8:15 AM, and a clinic visit with my oncologist at 9:45 AM. The exam was finished by 10 AM. All-in-all, a very quick efficient visit. My doctor thought I was doing great and looked well. He won't have the CT scan results for a few days. Given how compromised my neck area is from past surgeries and radiation, he is reluctant to give me a diagnosis on his reading of the scan. But, I could tell that he'll be surprised if there is any areas of concern that pops up from the radiologist's reading of my CT scan. Barring any unexpected turns for the worse, my next visit will be scheduled for late September (in 3 months). I haven't gone that long between visits since this ordeal began over 4 years ago. My anxiety level is reduced and I'm feeling good.

Thanks for checking in. Good health to you all.

Father’s Day

2009-06-18T13:22:00.001-05:00

Sunday is father’s day. We had our mini-celebration last night as my wife and daughter will not be here with me on Sunday. It felt good. My daughter made me a to-die-for card (I won’t share the details). They gave me 8 sleeves of Titleist golf balls (which I need as I go through balls like others go through fill-in-the-blank) and a golf GPS device which I wanted (not needed). After what seems like a very long time away from the course, I started back up in earnest a month ago. My typical game from the men’s tees is currently 100 – 110. I did shoot a 94 last week. It was a bit of a fluke. It was also not too far off my game from my pre-cancer days. Anyway, back to father’s day. Someone asked me yesterday what drove me to put all this effort into staying alive. I said there were a few factors, but the biggest was wanting to see and help shepherd my daughter grow up. She’s a teenager and has been quite trying at times in the past 6 months. Her card was a joyful reminder as to why I’m glad that I’m still here.

On the health front, I’m stable. I began a new exercise routine a month ago and it is helping with body tone and stamina. This coming Wednesday I go back to the cancer center for a CT of my head & neck area and a clinic visit with my oncologist. My anxiety level is high. It’s not that I think something is definitely wrong, it’s more the unknown and not-knowing that rattles me. It will take about a week to get all the results from that visit. So, unless there is news before then or the urge hits me to write again sooner, please look for an update towards the end of June.

To all you fathers out there, Happy Father’s Day.

Take care and good health to you all.

Brief Health Update

2009-05-13T18:25:00.000-05:00

I had three clinic visits at my cancer center today. Following a physical exam by my oncologist he said I looked great. I asked about a longer term prognosis. Paraphrasing, he said that I’ve had no evidence of disease for long enough such that he felt the immediate danger was far reduced. He also said I beat some pretty tough odds to be where I am today with no evidence of disease for 19 months. We discussed the rash which I mentioned in my last blog entry. He did not feel it was cancer treatment related. My other concerns about poor blood circulation and foot neuropathy did not deter him from having me continue on with the daily dose of 150 mg Tarceva pill. In about 6 six weeks I’ll go back for a head and neck CT scan.

On the obturator (mouth prosthesis) front, we abandoned trying to get the new one to fit properly. They adjusted my old obturator. With the device in, I’m estimating that my speech is approaching 85% of the quality of my pre-surgical voice. It still takes some effort, but I’m quite pleased with this progress.

I also saw the physicians and clinicians in the Supportive Care unit. They have been a great resource to me over the past year. They helped me address fatigue, nutrition, and depression. Given the positive trend in my health (both physical and mental), we agreed that I’d call them if there is a future need.

That sums it up for the day. Take care and good health to you all.

Treating Cancer as a Chronic Illness

2009-05-12T18:33:00.003-05:00

I had a lively discussion a little over a week ago on the subject of taking chemotherapy drugs (any chemotherapy drug) to keep my cancer (if it exists) at bay. What I tried to explain in this theoretical discussion was the potentially toxic side effects of the chemo drugs (e.g., stroke, death) and as a result why one would want to not take these drugs. I’m not sure the recipient of this discussion understood my perspective.

Today, my brother sent an excerpt he had found on the FDA MedWatch website. The article posted on 5/9/09 (less than one week ago) was about Tarceva. See reference 1 below for the full article. In essence, the pharmaceutical company, Genentech, that manufactures Tarceva added wording to their “WARNINGS AND PRECAUTIONS” section on their prescription instructions. Fatality was one of the new adverse side effects. Per my prescription, I have taken the maximum recommended dose of Tarceva (150 mg) daily for over 17 months. That works out to 517 doses. So, my theoretical discussion of just over a week ago has turned into something a bit closer to home. Although rash was a previously known side effect, the new warning seemed to heighten this side affect as a more severe warning sign. To compound the issue, I have a moderate rash on my side that appeared about a week ago. Even before I became aware of the updated warning today, it was one of my top subjects for tomorrow’s cancer center clinic visit.

Here’s what I currently believe. On the plus side, Tarceva is keeping my cancer at bay. On the negative side, Tarceva is causing a moderate rash, continued neuropathy in my feet, and poor blood circulation. I’m guessing my oncologist will examine me tomorrow and recommend that I begin taking a smaller daily dosage with a warning about staying in close touch with him if the rash gets worse.

The bottom line to all this is that treating cancer as a chronic illness is a step in the right direction, but it is not without its pitfalls. This can certainly be a case of the cure being worse than the disease.

On a separate subject, my original diagnosis was April 29 2005. That’s over 4 years ago. I’m still here, but the journey has left me scarred both physically and mentally for life. Last night I had a dream (actually a nightmare) that my right side neck lymph nodes were swollen. This would mean (at least in my mind) that my cancer had returned. It was so real that I spent time feeling the lymph nodes in my neck when I woke up to see if they were swollen. They weren’t, so it was a dream. It was also a relief. This disease will never leave me completely alone. On that note…

Take care and good health to you all.

=======================
Reference:
http://www.fda.gov/medwAtch/safety/2009/safety09.htm#Tarceva

Health care IQ – The results…

2009-04-15T08:02:00.004-05:00

Thank you for filling out the survey from my April 13th blog entry. My source for this information came from a book titled, “Redefining Health Care” published in 2006 by authors Michael Porter and Elizabeth Teisberg. Michael Porter is a professor at Harvard Business School and Elizabeth Teisberg is a professor at the University of Virginia Business School. They specialize in competition, business strategy, and innovation. Michael has authored about 20 books and published 70 papers since the mid 1970s, many of them focused on health care.

Survey Q&A

Question #1

How many years does it take between the results of a successful clinical trial and that drug / process becoming a standard medical practice?
· 2 years
· 5 years
· 10 years
· 17 years

80% of survey respondents chose 5 and 10 years. 20% of respondents chose 17.

The answer is, 17 years. I don’t know about you, but this really blew me away. I watched the standard of care change for head and neck cancer patients over the past few years. 4 years ago the standard of care was radiation followed by surgery followed by wait and see. The current standard of care is concurrent radiation and chemotherapy followed by wait and see. I don’t often dwell on how my life could be different “if only” this or that happened. But I do focus on this one. What if the standard of care adaptation had been speedier? 17 years is just too long. And, here’s the sad part. My cancer hospital is probably an early adapter to change. There may still be great cancer hospitals out there treating head and neck cancer today with the old standard of care. I feel bad for the impact on the lives of those patients.

Question #2

Motor vehicle accidents cause more deaths per year than in-hospital medical errors (e.g., wrong drugs, preventable infections). True or False?

80% said false, 20% said true.

The answer is false. According to a study published by the Institute of Medicine (IOM) in 1999 (a little dated), there were an estimated 44,000 to 98,000 preventable in-hospital deaths per years. Motor vehicle deaths were about 45,000. My perspective on this is that preventable in hospital deaths have dropped dramatically since the 1999 study was published at the higher quality hospitals due to building quality, accountability, and transparency into the patient care process.

Question #3

There were (fill in the blank) Americans without health care insurance coverage in 2004. Possible answers were:
- 25 Million
- 45 Million
- 65 Million
- 85 Million

Survey participants were split evenly on the first three choices... 25, 45, and 65 million.

The book quotes a figure of 45.8 million Americans without health insurance in 2004. So, everyone was close to the right answer. The World Factbook puts our current population at 307 million. So, that boils down to about 1 out of every 7 people in the US is without health care insurance coverage. 45.8 million is a huge number. One issue with this is that for most of these people, their first line of health care is a trip to the emergency room. There, they are treated and admitted or sent on their way. Unfortunately, emergency room treatment is expensive and puts a drain on everyone else. One could write an entire book on this subject alone. There are no good quick fixes here.

Question #4

There is a high correlation between how much one spends for health care and how satisfied one is with their care. True or False?

Most survey participants chose false. False is the correct answer. I won’t get into the details of the book, but they measured health care costs in all 50 states. For a similar population set and type of services, costs ranged from a low of $3,500 per year in Hawaii to a high of over $8,000 per year in Louisiana. There was virtually no correlation between health care cost and satisfaction.

Question #5

Medical care spending in the US is 14% of our Gross Domestic Product (GDP). Medical spending in Mexico is less than half that of the US. Life expectancy in Mexico is higher than in the US. True or False?

About 40% of survey participants chose false, the rest chose true. The answer is false. Again, the data is a bit dated (from 1996), but the US life expectancy is 79 years and Mexico is a bit over 76 years. The highest life expectancy is in Japan at 83 years. They spend about half as much on health care as those in the US.

Conclusion

You all did pretty well with your health care IQ. What we need in this country is a health care system which is transparent, reports results (good and bad), looks at care holistically from the patients perspective (from prevention, to care, to rehabilitation), and allows free market competition among heath care providers. I hope you learned something from participating in the survey or at a minimum it gave you some good food for thought.

Thanks again for participating.

Enjoy, take care, and good health to you all.

Health care IQ

2009-04-13T18:41:00.000-05:00

I’m continuing to read about our US heath care system. It’s good bed time material. To make this fun and maybe a bit more interactive, I’ve designed a quick one page 5 question survey to test your heath care IQ. Please click on the link below.

http://www.surveymonkey.com/s.aspx?sm=rHPY9Eo1NK_2fTqplS7RP7tA_3d_3d

It takes less than a minute to complete and doesn’t even have a place to include your name or comments. I’ll publish the answers and the survey results towards the end of this month.

Enjoy, take care, and good health to you all.

Cost of Bringing New Drugs to Market

2009-04-08T12:13:00.002-05:00

Most of us have seen an email making the Internet rounds on the cost of manufacturing a drug (e.g., Advil), the retail price, and the huge markup… 100s or 1,000s of percent. What’s not factored in is the cost of actually bringing a drug to market.

According to a report by the Tufts Center for the Study of Drug Development, the average total research and development cost for new drugs in the late 1990s was $897 million. THAT’S ALMOST ONE BILLION DOLLARS. THAT’S THE AVERAGE. That total was more than double the average total cost of bringing a new drug to market in the 1980s, and more than five times the cost in the 1970s.

Another recent study estimated that only 21.5% of drugs that began Phase I trials ever get to market. This boils down to just over one-fifth of the drugs that looked promising enough in animal trials to warrant human trials proved to provide an advantage over drugs currently on the market.

So, the next time you pop an Advil, Aleve, or Aspirin and think about how much money the drug companies are making, maybe you will factor in their R&D costs and the lives that were saved, prolonged, or improved along the way.

Enjoy, take care, and good health to you all.

Dust in the Wind

2009-04-07T15:40:00.002-05:00

Hi. Sorry, but I wasn’t able to keep to my blog schedule. No excuses. My future plan is to publish when I have something to share.

One of the things that helps get me through tough times is listening to music. For those that know me, you know I’m completely tone deaf. That’s doesn’t seem to take away from music’s meditative effect. Some people like classical music. I’m not one of them, but I’m beginning to understand the appeal. I’m a child of the 60s and 70s and still love good ole rock and roll… as long as it’s not too loud. I listen with my eye’s shut. I also like lite country music, songs from Bonnie Raitt or the Dixie Chicks. My current favorite song is Dust in the Wind by Kansas. Here’s the song and lyrics on YouTube...

http://www.youtube.com/watch?v=p9vWvqUebfc

Give it a try. Sit back, shut your eyes, and go with the music.

Enjoy, take care, don’t take yourself too seriously, and good health to you all.

U.S. Financial Markets - The Stimulus Package

2009-04-01T13:55:00.005-05:00

Although you didn't come here to read about the economy, since I’m not writing about cancer for now, I thought I’d chime in on a subject that has impacted many people… the state of the U.S. financial markets. Here’s my take. The stimulus package's goals were to 1) prevent the collapse of our financial system, 2) open up the credit markets (e.g., allow prudent borrowing), and 3) allow the free market (i.e., capitalism) to prevail without the ongoing need for government aid.

As a bit of background, I have worked in Washington. First as a summer intern for the Federal Energy Administration (now DOE) between my first and second year at graduate school where I earned a Masters degree in Public Administration from the Heinz School at Carnegie Mellon University and later as a consultant working at the Pentagon for the Strategic Defense Initiative Organization (SDIO - the Star Wars program). What I learned during my years in Washington is that it is very hard to get anything accomplished. The politics, the turf battles, the bidding process, congress, employee morale, you name it… It’s just not that easy.

Now, let’s turn our attention back to the stimulus package. I feel they have succeeded in goal number 1. The stimulus package averted the complete melt down and destruction of our financial system. This was to the initial credit of President Bush who recognized in time the true crisis nature of the situation followed by focused aggressive action on the part of President Obama. I’ve never seen Washington work so hard and so fast in all my years on earth. On goal number 2, the restoration of our financial markets, there is light at the end of this tunnel. And no, it’s not an oncoming train. I know people who are taking advantage of the first time home buyer credit of $8,000 to buy their first home, I know people who are refinancing their mortgages and in doing so are putting significant money into their pockets monthly. This restoration will not happen overnight, but there are positive signs that they are beginning to work. It took us years to get into this mess and it could take years to get us out. On goal number 3, allowing the free markets to prevail, this is the most controversial right now. There are many who would argue that the U.S. went too far in the “forced” resignation of Rick Wagoner (CEO of GM) this week. These are drastic times and drastic measures are needed. Mr. Wagoner seemed like a good guy, he seemed to be trying, but in the end, our government (which is us) decided he wasn’t being successful enough. They didn’t actually force him to resign. They said they would not lend his company any more money if he stayed in place. I don’t want the U.S. car companies to go out of business. I think our government is looking out for our interests. The answer to whether or not we will achieve goal number 3 will not been known for a year or two. I encourage people to have at least a modicum of patience in this area.

Let’s turn to the subject of our deficit. It’s terrible, the worst in history, our kids will surely suffer, and rampant inflation is a given. I’ve heard all of these remarks. They are all possible, but I am willing to support the current deficit when the alternative was a complete collapse of our financial system (see goal 1 above). A collapse of our financial system would have led us into a depression. We have some hard times ahead, future plans about our own personal spending, retirement, and even a child’s education may be altered. But, I say, at least for now, we live to fight another day.

Take care, be patient, and good health to you all.

A Favorite Experience Recalled - Jill Sobule

2009-03-30T18:19:00.004-05:00

I’m not sure where this blog is headed. Since I don’t really want to talk about cancer right now, I thought I’d share with you one of my life’s favorite moments. A friend called me today. We started talking about music and concerts, etc when I shared the following story with him.

It was a dark and stormy night. Yes, it really was. It was a Sunday. We lived outside of Washington DC in a Virginia suburb at the time. This took place about 8 years ago. My wife asked if I’d like to go see Jill Sobule play. By then, she had two number 1 songs out… “I Kissed a Girl” and “Super Model.” She also had 5 or 6 CDs at the music stores. I loved her music. She was doing a women’s benefit at a restaurant / bar in downtown DC that night. There was a torrential downpour with lots of heavy thunder and lightening. That may explain why only 20 to 30 people showed up to hear her play. We had gotten there early and had a seat at a table right in front and just slightly left of the stage. Jill came on at about 9 PM. She played for almost 3 hours. Her music was amazing. She did all her music solo. For three hours she stared directly at me. No kidding. At the time, my wife said, “she keeps staring at you.” Towards the end of her set, she invited me up on stage to hold some sheet music for a song that was under development. Although I was a bit nervous, the couple of Long Island Ice Teas I’d consumed and a steady hand kept me from shaking the sheet music. After the show, we bought a CD (although I already had all of them), which she autographed to my daughter with her love. My daughter was a fan of hers as well. Jill has a website at http://www.jillsobule.com/. She’s a terrific entertainer. If you ever get a chance to see her, I highly recommend it. I have my wife to thank for taking me out that evening and my sister to thank for introducing me to Jill's music.

Take care and good health to you all.

The Cancer Time Warp

2009-03-27T14:39:00.004-05:00

I began seeing a Therapist earlier this year. I see her once every two weeks. It is helping. One “ah ha” moment from my last session emanated from a statement I made to her. I said, “It feels like my diagnosis was just last week [it will be 4 years ago next month] and everything else in my life seems like they happened a lifetime ago." She said it is not uncommon to be self absorbed and engrossed in a personal traumatic event. The event becomes all consuming and most everything else takes a backseat. This resonated with me. It has been like a time warp. The world, events, and people around you continue on with their lives and somewhat gradually (figuratively speaking), I’m coming out of a coma. It feels good to be here.

Updates to this blog will be posted on Mondays, Wednesdays, and Fridays.

Take care and good health to you all.

Random Remarks

2009-03-25T16:34:00.003-05:00

Hi. Having run out of things to write about regarding my cancer for the time being, yet wanting to continue writing this blog, I thought I’d share a few somewhat random activities I’ve enjoyed recently. I also decided, somewhat randomly as well, to try to write 3 blog entries a week on Monday, Wednesday, and Friday.

Random item #1: I finished a good book this week. It is non fiction and titled, “The Best Practice – How the New Quality Movement is Transforming Medicine.” It was written by Charles Kenney with a copyright date of 2008. The book covers the time period from the early 1980s to the present. It is based on the premise that there are 98,000 preventable deaths each year in the U.S. due to health care mistakes. Mistakes include infections picked up while in the hospital, prescription drug problems (too little, too much, or the wrong drug altogether), surgical mistakes (operating on the wrong side of a patient's brain), and the list goes on and on. The second premise is that regardless of one’s socioeconomic status, only half the Americans on average receive the care and treatment that is needed. The author walks us though how the medical establishment has been trying to transform itself into an organization that is continually striving for improvement and excellence. It’s a good read for anyone interested in health care in the U.S. Coincidentally, I watched the movie Sicko by producer/director Roger Moore the day I finished this book. It presents a similar story as to issues within our health care system without realistically addressing ways to address their causes.

Random item #2: I finished a great fiction book today titled, “Replay.” The copyright is 1986 by author Ken Grimwood. The premise was somewhat like the movie Groundhog Day (Bill Murray 1993), but taking place over a span of 25 years and in a much more complex and intriguing way. It had enough twists and turns to make this a 2 day page turner. If you’re looking for a fast read with great character development, this is it.

Random item #3: I found a website this week that has been gaining incredible traction. It was non-existent 6 months ago and is now rated in the top 3,000 most visited websites in the world. It is based on the premise that one person’s misery can be another person’s entertainment. Somewhat like clips from the old show America’s Funniest Home Videos. Except, these aren’t videos; they are short (300 character or less) stories submitted by people about funny, sad, awkward, etc. situations that happen to them in their day-to-day lives. The website is www.Fmylife.com. If you’re a little down and would feel better under the heading of misery loves company, give this website a try.

That’s it for today. See you again on Friday. BTW- Thanks to all of you that have posted comments recently. If you have any topics that you would like to hear about, please post them or send them my way. Take care and good health to you all.

"You have cancer." Now what? My Top 10 List.

2009-03-19T07:27:00.004-05:00

“You have cancer.” Three little words. Those are the words I heard on April 29, 2005. It is almost like it happened yesterday. A doctor did a fine needle aspiration on one of the lymph nodes in my neck. She poked a long fine needle into one of my lymph nodes a few times, withdrew some fluid, left the room, came back a few minutes later, and repeated the procedure. When she came back three minutes later, she said, “You have cancer.” There it was, plain and simple. There was no “let’s run some more tests.” There was no “maybe” in her declaration. I had cancer. I soon learned that it was stage IV, the most severe.

I’ve learned a lot of lessons about cancer and treatment over the past four years. A “post” recently asked – what would you tell someone who just found out they had cancer? Here’s a list of things I would say:

1. Know your cancer. There are hundreds of different cancers. The American Cancer Society (“ACS”) lists 16 categories of cancer representing over 1.4 million new cases in 2008. Each type of cancer is different in the way it invades your body, the treatment options, and the prognosis. The more you know about your specific cancer, the better off you are in working with your medical team and making decisions about how to proceed. The Internet provides access to a wealth of information and resources.

2. Find the right cancer clinic. The ACS estimates that cancer caused 566,000 deaths in the U.S. last year. That is more than one death per minute, 24 hours per day, 365 days per year. Cancer doesn’t take off for weekends or holidays. Finding the right clinic can help save your life. Unfortunately, I have talked to too many women who were told “don’t worry” that lump is probably this or that (e.g., a clogged milk duct). Well, sometimes the doctors were wrong, and those women died. I like the motto: “Hope for the best, but prepare for the worst.” You want a cancer clinic that specializes in your type of cancer. Many clinics are fully prepared and qualified for plan A, but if plan A doesn’t work, they are not going to be able to perform plan B. Plan B for them is referring you to a larger, better equipped center. For me, I’d rather start off with a clinic that can perform plan A, B, C, and D.

3. Find the right doctors within the cancer clinic. I switched oncologists within my cancer clinic after the first year. I lost faith in my original oncologist, so I decided to switch doctors. This is your life, and you should feel confident in the treatment prescribed. There are many options, and being an informed patient will help in choosing a path that is right for you.

4. Treat your core set of doctors as a team. Cancer is so complicated, one doctor is not enough. To be great, doctors specialize. In my case, the core team included an oncologist, surgeon, radiologist, and their physician assistants. They have been supplemented at times with other doctors who specialize in pain management, psychology, and other areas. You should understand how your doctors collaborate. For me, I liked knowing that each week my doctors gathered to talk about each patient, their treatments, progress, and next steps.

5. Understand your treatment and options. This means their probable success, timing, and life altering outcomes. Cancer is treated in slang terms as slash (surgery), burn (radiation), and poison (chemotherapy). These terms were not arrived at lightly. Many cancer treatments are as much art as science. The best doctors don’t have the answers. They use their best judgment and if you are confident in your doctor, then you will have an easier time choosing the right paths.

6. Learn to live with uncertainty. As mentioned, for many cancers, treatment is as much art as science. It can take months for chemotherapy drugs to work or not work. It can be months between major tests. Some surgeries will require the surgeon to keep cutting until they find clean margins. They may not be able to tell you beforehand how much permanent damage there will be, how long the recovery time may take, or even if the surgery will be successful. I remember waking up after a major surgery. In the recovery room, the doctor was talking to the patient in the bed next to mine. He said, “I’m sorry, but the cancer has fully taken over several vertebrae and we were not able to remove it.” I could tell it had been a long, complicated surgery. I couldn’t see the patient as there was a curtain between us, but I could tell that the prognosis was bleak.

7. Understand clinical trials. Clinical trials are typically categorized as I, II, III, or IV. In a Phase I trial, the researchers are generally looking at the toxicity impacts on the human body. These trials are generally small with 10 or less humans. Phase II begins to assess drug efficacy. There may be varying dosages within a Phase II trial looking for the magic bullet. Phase II trials are still primarily experimental and will be limited to a few hundred people. Phase III trials are where it gets really interesting. The research has proven that the drug can be tolerated (Phase I) and it has shown some promise (Phase II). A drug in a Phase III trial could include 1,000s of people across many different medical institutions and countries. They can take years to complete. One drug I’ve been interested in -- Zactima (ZD6474) -- has been under study for years. There are currently 77 trials listed for this drug with a status of active, recruiting, terminated, or completed. Clinical trials have very specific inclusion and exclusion criteria. The http://www.clinicaltrials.gov/ website allows you to search among its 70,000+ trials taking place in 163 countries. This is a great resource. There may be a clinical trial out there for you.

8. Understand your health insurance in depth. Read your health insurance document. Not just the guide, but the booklet. There are a lot of areas that become gray to one’s insurance company when the bills start coming in. What looked like a no brainer suddenly becomes a major issue. My insurance company has been reasonable, but not without a few major fights. Know your rights, stick up for them, and use the appeal process if you feel your rights have been violated. For those who have been paying insurance premiums for many years, it is an obligation (contract) for the insurance company to support your needs should they arise.

9. Take charge of the cancer. To the extent possible, don’t let the cancer control your life. There are drugs and therapies that can help you manage chronic, acute, and psychological pain and issues. Take advantage of these resources and make the most out of your current situation.

10. Understand the impact of your cancer on family and friends. Cancer can create stress in relationships. It can also create bonds. Sometimes cancer impacts close family and friends more so than the cancer patient. It has certainly impacted some of my relationships -- some for the better, and some for the worse. This impact can be more powerful than the cancer itself.

I hope sharing this information is helpful. If you would like to comment or add to the discussion, please post a comment. If you have ideas for other discussions or topics, please let me know.

Another Cancer Patient Passes Away

2009-03-18T03:14:00.008-05:00

Hi,

I follow 1 or 2 cancer blogs at any given time. I choose them because for different reasons they resonate with me. One blog that I've been following since it's inception 8 months ago is a blog titled "Waeger Will Win" co-authored by Dan Waeger and his fiancee Meg Rodgers. Dan had been fighting lung cancer for almost 4 years when he passed away at 26 (note, I updated his age based on feedback from his mother -- I had mistakenly said "in his early 30s") on Monday March 16 2009. It's probably hard to go back and read the 100+ blog entries since the blog began, but the last 5 are particularly poignant. Even in death, this couple could find compassion, love, sorrow, a winning attitude, and dignity all at the same time. Instead of dwelling on the act of dying, one recent post defined the term "winning" and tied it back to Dan's situation. Another post focused on 25 things to remember about Dan. The blog carries both humor and gravity. If you have an interest in learning from others by example in a time when "for better or worse" followed the "worse" case, yet did so with so much strength and loving, it's worth reading the five posting dated from March 5 2009 to March 16 2009. Their blog is at:

http://waegerwillwin.blogspot.com/.

My wishes for peace go out to Dan, Megan and their families and friends.

Two other items. Thank you for all of your comments on my last post entry. About a third were from people who actually posted comments directly on the blog. The rest were excerpts from emails I received. I removed the senders last name (or just included their initials to ensure anonymity) as well as non-cancer related comments before posting them. This blog is more about "my cancer" than it is about me.

One blog comment last week suggested that I provide advice about what approach I would use today, given my found (although not desired) expertise in Cancer World if I were to hear those life changing words today, "you have cancer." That's an excellent suggestion and a topic I'll address in the next few days. They also suggested I ask you what subjects about cancer may be of interest. I certainly don't have all the answers, but it may lead to some useful commentary by me as well as contribution by you. If you have questions or subject areas, please post them.

Once again, posting a comment is easy and doesn't require a user ID or pass code. A comment can literally be posted in a minute by clicking on the word "comment" at the end of each blog entry. Check the "Anonymous" radio button blog option if you'd rather not log in. It is that easy.

Thanks for checking in, stay positive, and take care of yourself.

Health Update and Comments on MD Anderson

2009-03-12T12:54:00.015-05:00

I'll start off today by asking you for a favor. A lot of you have my email address, it is readily available in my blog profile. I always appreciate hearing from you. My favor is that you post comments, when you feel like it, on this blog. It is set up so that you can do it anonymously thereby avoiding the need for yet another ID and password. I'd like to experiment with trying to create a blog community. Thank you. I may change my mind on this, but I'm thinking it may be a fun and useful experience.

I spent a full day at the cancer center yesterday. I arrived at 5:50 AM, had blood drawn at 6:20, a chest x-ray at 6:50, an IV inserted at 7:30, a H&N CT at 7:45, a chest CT at 7:55, a dental oncology visit at 9:00, a surgery follow up consult at 11:00, a supportive care consult at 1:00 PM, an oncology consult at 2:00, and a return to the dental oncology unit at 3:00. I left the hospital a little after 4:00 PM. It was a productive day.

The 2 dental oncology visits took 3 hours in total, no waiting involved. They worked on shaping and finishing a new mouth prosthesis device fitting it to plug the unique defect in my soft palette. I’m wearing it now. Its like getting new braces; it will take a little while to adjust to the feel and fit. I’m encouraged by the early results however.

I measure visit productivity as the time when I’m being seen, examined, or tested (the numerator) by the total time I am at the hospital (the denominator). I don’t use a stop watch to perform this measurement, but I’d guesstimate that yesterday was 70% productive. I’m also guessing that my average visit productivity is around 15%. Visit productivity has no linkage to actual heath care quality. It does however have a high correlation to my (and by a loose interpolation to) patient satisfaction. 15% as an average is pathetic, 70% is off the scale incredible.

My clinic visits involve a great deal of questioning, answering, general catch up, probing and listening with different medical devices and fingers, and in the end an assessment. In summary, my doctors thought I looked well, they did not see or feel any areas of concern, and my oncologist thought I was tolerating my daily chemo pill so well that he left me at the highest recommended daily dosage. I was okay with that. My chest CT had been finalized by a radiologist and showed no evidence of metastatic disease (i.e., no lung cancer). That was a relief after the concern identified by my primary care physician last week. Better safe than sorry in my opinion. My H&N CT will take a bit longer to interpret. With all my surgery-induced scar tissue, a CT with contrast is a good tool, but not a great tool at identifying new cancer growth. Unfortunately for me, it’s probably the best tool available. It will be a few days before I hear back on the test results from this CT scan. I'll post the results when they become available.

My cancer center, MD Anderson, has been rated the number one cancer center in the US for the past 4 out of 5 years. Although my visit productivity value may be low, the quality of care is incredible. They go out of their way to look holistically at patients. There is amazing collaboration among the doctors and the departments. A surgeon won’t feel good about performing an amazing surgery if the patient later dies because the cancer came back elsewhere and finished the patient off. They are also mindful of the quality of life and embed that into their ongoing care. I’m not that happy with some of my surgically-induced changes, but I give my surgeon and his team (assistants, researchers) an A+ along with my oncology doctor, radiologist, supportive care doctor, and dental oncologist for allowing me to get this far, regardless of what happens in the future. One other thing that impresses me about MD Anderson, they have procedures in place and they follow them. They may not make sense to the layman, but I have little doubt that they are there for a good reason and as odd as some of them may seem, they save lives and deliver the best cancer-related health care available in this country.

Take care of yourself. And remember, comments are welcome. A story about yourself, a comment on the material in the blog, or something as simple as a hello are welcome.
================================

Added at 3:00 PM on 3/12/09

My oncologist's Physicians Assistant called with an update on my H&N CT. There is no evidence of disease shown in the H&N CT. That makes it 17 months with no evidence of disease.

A Long Day at the Cancer Center Tomorrow

2009-03-10T22:42:00.015-05:00

Hi. I have a long day at the cancer center on Wednesday (3/11/09). It will begin with a blood draw at 6:00 AM. That will be followed by a CT scan with contrast (meaning an IV is required) of the H&N and chest at around 8:00 AM. Then I have clinical exams with 4 separate clinics: surgery, oncology, supportive care, and dental. I'll get some feedback on my health during my clinic visits. The CT results will be available in 7 to 10 days. I'm a bit apprehensive, but am going into it feeling well. I'll post results as soon as they are available.

A friend sent me these pictures today. I thought they were incredible and as such am posting some of them on my blog for you all to enjoy. My sister and I experienced a storm similar to the one depicted in picture #1 in the Arizona desert on our way to Tucson in 1970. Double clicking on any single image will show you a larger version of that image.

The Challenge of Eating

2009-03-09T16:56:00.005-05:00

Many people ask me why I have difficulty eating. There are probably others who wonder why, but are either too polite or shy to ask. This post is for the curious as well as for others that may have a similar problem. As a bit of background, I had major cancer removal surgery in July of 2006. That surgery removed:
- a 7 by 2.5 inch lining of skin, muscle, and tissue within my upper throat area (and was replaced by tissue from my leg),
- a small portion of my tongue (including a major tongue nerve),
- my left lower jaw (which was replaced by a long piece of titanium and a bone, the tibia, from my leg), and
- last, but not least, half of my epiglottis.

Swallowing is a very complex anatomical mechanism. When it works well, like breathing, it happens effortlessly and naturally. The following link illustrates how the anatomy accomplishes eating and breathing. It is a motion illustration with the red flow representing the breathing and the green flow representing the food movement.

http://people.eku.edu/ritchisong/epiglottis.gif

Here’s a still picture of the above link. I recommend using the above link however as it does a much better job of demonstrating how the epiglottis works.

After my July 2006 surgery, I had a tracheotomy that allowed me to breathe for about 2 months and a feeding tube that allowed me to get all of my nutrition for about 4 months. Obviously, it’s easy to see that my anatomy has changed. The rest of this posting described exactly what has changed and how I’ve tried to compensate for those changes.

First, the muscles and their associated nerves which controlled them in the back of my throat which help push food down the esophagus (which connects to the stomach) are gone. Second, half of my epiglottis is gone. A normal and healthy epiglottis moves with each swallow to protect the airway (trachea or windpipe) from food and liquids entering the lungs. Third, I don’t have the crewing power that I had before the removal of my lower left jaw.

There are techniques to eating which help me get food into my esophagus while helping to avoid having food or liquids going down into the trachea (which is attached to the lungs). Food and liquids going into the lungs cause one of two issues. The first is severe and immediate chocking which can cause almost immediate asphyxiation and death. The second is a slower process of illness which is a build up of food and liquid in the lungs which can lead to pneumonia. I’ve read many cases of people in my situation either getting pneumonia or giving up and going back to a feeding tube, or both.

My swallowing therapist a while back taught me to try swallowing using a chin tuck. This is where one takes food into their mouth, tucks their chin to their chest, and then swallows. I’m not sure what this does to the anatomy, but it helps me a bit. Unfortunately, it does not help enough. What I added to this technique is 1) eat in a reclining position, 2) take a breath and hold it before each swallow, and 3) focus intensely on what I’m doing. The result of this is that gravity replaces some of what the muscles in my throat used to do, a small air pocket is created in my trachea thereby helping to keep food and liquids out of my lungs, and by concentrating on what I’m doing, I rarely choke or aspirate. I’m sharing this not so that you can run out and try it, but maybe it can give you a few ideas to talk over with your swallowing therapist. What works for me may not work for you and in no way is an endorsement of something that you should try. We have all been compromised in different ways.

90% of my nutrition comes from liquids (e.g., Boost). The other 10% is a variety of foods, mostly soft and small, to avoid the likelihood of choking. It is not a particularly social way to eat (which is why I don’t eat in public), but it has allowed me to maintain my weight for 2+ years without a feeding tube. I chose to get the majority of my nutrition through liquids because it is easier for me then the intake of solid foods.

I hope this was helpful to some and educational to others.

Thanks for checking in. Take care of yourself.

E Ticket Ride at Disneyland

2009-03-02T22:03:00.005-06:00

For those of you that are old enough, you know what the E ticket ride at Disneyland was. I’m not talking about an “E”lectronic ticket, nor am I talking about Disney World. The E ticket at Disneyland was for the best rides. Back in the old days of the 50s, 60s, and 70s, you needed a ticket for each ride once you were inside the park. As a kid growing up in southern California I used to love going to Disneyland and going on the E ticket rides like the Matterhorn with all the speed, twists, turns, and bumps. No matter how many times I rode the Matterhorn, it always thrilled me. To ride the Matterhorn, you needed the E ticket. A C ticket would get you a seat on the Dumbo Flying Elephants. An A ticket would get you into the Sleeping Beauty Castle. The Castle really wasn’t my cup of tea. For me it was all about the E tickets. Truth is, even as a young adult back in Southern California, I still loved the E ticket rides.

What’s this have to do with my cancer? I’m older now and having cancer is like an E ticket ride, but not in a good sense. There are lots of spins, turns, and other unexpected moves that take your breath away.

I stopped posting to this log recently. I was trying to leave cancer world behind. Having no evidence of disease for 16 months has put me in a place where I have been trying to get on with my life outside and away from cancer world. The thing is however, for me, it always seems to want to pull me back in.

In early February I went in for some tests at my primary care physician (PCP) due to experiencing a slight shortness of breath. My doctor took a chest x-ray and did a lung capacity test. He said my x-ray looked clear (although he would have to send it to the radiologist for review) and that my lung capacity was excellent. Given that this all looked okay, he had me see a cardiologist to rule out any heart troubles. That exam was last week. The initial tests were all good. I have one more test tomorrow, but am really not expecting that test to turn up any heart issue. My PCP called today (3+ weeks after my x-ray) and asked me to come back in for another x-ray. The radiologist found a spot on one of my ribs that he thought could be a bone shadow (no big deal)… or, it could be a lung nodule (i.e., lung cancer). For three years at the cancer center my doctors have been very pleased that my H&N cancer has not spread to my lungs. Lung cancer is a natural progression for H&N cancer. Of course, since they are always on the lookout for this and because my mom died of lung cancer in September of 2000, it has heightened my sensitivity to this potential issue. My guess is that it will turn out to be nothing. I feel too good physically (maybe a bit tired at times) to believe that I may have lung cancer. I shared all of this earlier today with my oncologist at the cancer center. He is adding a chest CT to the H&N CT which was already scheduled for next week. The results from those tests will be ready around March 18th. Between now and then, I have to keep reminding myself to take advantage of this time.

Even if the cancer is not back (and I don’t think it is), it is never the less unrelenting. It's like the E ticket ride at Disneyland, even if you're scared and want to get off, you can't.

Thanks for checking in. I'll post again when I have some definitive news. Take care of yourself.

5 Stages of Grief

2009-02-12T14:48:00.002-06:00

Okay. Here’s a test. No peaking ahead now. Can you name the 5 stages of grief? Go ahead, stop, write them down. Did you stop? Did you write them down? For me, as with most things in life, I had to Google it.

They are 1) denial (this can’t be happening to me), 2) anger (why me), 3) bargaining (I’ll do xyz if you undo abc), 4) depression (frustration, hopelessness), and 5) acceptance (which is different from resignation).

So, how’d you do? 5 out of 5? Bravo! I never paid must heed to this. The reason for not paying attention to this is that I never went through stages 1, 2, or 3 (denial, anger, or bargaining). However, now I find myself in stage 4, depression. I’ve done some recent research and have come to find out, not too surprisingly, that this is pretty common for cancer survivors. I know I’ve written about depression in the past, but I seem to be struck in this state longer than seems right. I began some counseling recently which I think will help in the long run. It appears that until I accept the new me, the new “normal,” I’ll be struck in stage 4. So, if I really want to move on with my life, meaning, if I want to live life to its fullest, I have to accept who I am today and leave behind who I used to be. It may sound a little corny, but it is embracing who you are and not who you were. Since, adaptation, is my middle name, I don’t know why this is so hard. Anyway, that’s what I’m working on. I suspect that until I can get to step 5, I’ll be wasting time and energy in step 4.

As to my physical health, I’m pretty good. I had a non-invasive procedure done on my right shoulder which gave it back almost full mobility. I had an x-ray yesterday and my lungs are clear, so no signs of lung cancer (always a concern for H&N cancer victims). I’m half way through a 10 day course of antibiotics to fight a sinus infection. I’ve had no evidence of cancer for 16 months. So, there are no new physical complaints worth mentioning. My next check up is in about a month. I’ll keep you posted.

One last thing, my new favorite song, Good Riddance (Time of Your Life), by Green Day, 1997. Here's a version of it with lyrics on youtube. http://www.youtube.com/watch?v=awJ_ekg6BZQ

Thanks for checking in and take care of yourself.

Happy New Year!

2009-01-06T21:51:00.001-06:00

I’ve been a bit delinquent in updating my blog lately, so here goes. My systemic health remains good. A visit to the cancer center on Monday for a clinical exam found nothing of concern. It had been 6 weeks since my first “routine” exam back in mid-November 2008. This was the longest period in 3+ years between hospital visits and the extended length of time between visits feels great. My next “cancer” exam visit will be in March and will include a CT scan of the head and neck. I have other visits scheduled at the cancer center, some as early as next week, but it is to work on a new mouth prosthetic device, one that they think may be more comfortable than the existing device. I’m still struggling a bit with some minor ailments which include pain, shoulder mobility, and most recently cold feet. The cold feet are probably a result of peripheral nerve damage from the chemo. I’m seeing a shoulder specialist tomorrow and will probably follow through with a minor shoulder procedure and physical therapy later this month. The bottom line is that I’m spending a lot less time on health issues.

I’ve shifted my time to reading and have two book recommendations. The Longest Winter and The Snowball. The former is the true story of an 18 man platoon during the last year of World War II. They fought at the Battle of the Bulge and helped change the course of the war. For those that survived and were not captured they endured unbelievable conditions as POWs. The latter is a 1,000 page authorized biography on Warren Buffett. This isn’t the first Warren Buffett book that I’ve read, but it is the most engrossing. I’m not quite done with this one yet. Both books provide deep insight into humanity and are inspirational. To change subjects, if you haven’t seen it yet, I highly recommend Slumdog Millionaire as one of 2008's best movies.

Thanks for checking in and take care of yourself.

December 13 2008

2008-12-14T17:39:00.003-06:00

Two years ago on December 13 2006 I received terrible news of a major cancer recurrence. Last year on this date, I wrote about that day in 2006 and said that I hoped to be able to write about it again the following year. Well, against big odds, here I am. Health wise I should be thankful. I have had no evidence of disease for 14 months. I feel thankful, but not without reservations. This disease/treatment (yes, I’m still on chemo and other medications) has zapped my energy and makes me feel like I have the body of someone 25 to 30 years older than my actual chronological age. It’s wearing and frustrating. On the other hand, I’ve had some great experiences this past year. I’ve enjoyed good times and visits with family and friends. I’ve seen a few good movies and read some terrific books. I’ve been trying to think longer term, but am currently stuck in somewhat of a physical and mental rut. One doctor this year said I was being too hard on myself. Her intensions were good, but it angered me (you probably had to be there) and pushed me to an improved state. This past year has been better and easier than the year before. I’m committed to figuring out a longer term plan for myself next quarter and making 2009 better than 2008.

Enjoy the holidays. Thanks for checking in and take care of yourself.

"Routine" Checkup Report

2008-11-19T22:29:00.001-06:00

I saw my chemotherapy and supportive care doctors earlier today. Based on my physical exam which included blood work and vital signs accompanied by a decent amount of poking, prodding, and listening, they say I'm in good shape. That makes it 13 months with no evidence of disease.

My chemo doctor does not want me to start back up on the Avastin. I'm okay with that for now. My next appointment will be scheduled for January and my next scan with be in the January / February time frame.

After talking to my supportive care doctor and her team about my current concerns, they gave me some tips and thoughts on how to transition from a full time cancer patient to a new healthier normal from a mental perspective. I'm taking their wisdom and experience under advisement... in plain English, that means I'm thinking about it.

Take care.

More Medical Marvels

2008-11-19T11:54:00.003-06:00

Here’s something you don’t see everyday. A team of doctors and researchers used stem cells from a patient’s own bone marrow to grow and then implant the new wind pipe in the patient. The beauty of this is that the host body (in theory) will not reject the transplant due to it coming from the cells of the host. This was done in 2005 and the results so far have been successful. See URL…

http://www.msnbc.msn.com/id/27790019/

This ties into a political marvel as well. President-elect Barack Obama said early last week that as soon as he took office he would void the Bush presidential directive banning federal funding for stem cell research. I know many people view the issue (embryonic stem cells) behind the issue of stem cell research difficult, but I applaud our new president for his swift action on a prior executive decision that I personally found unconscionable. How many lives could have been saved if federal funding for stem cell research had been provided during the Bush years? We'll never know.

I’m at my cancer center today. It is in some ways my first “routine” checkup. I hope it stays routine and will provide an update within the next few days.

Thanks for checking in and take care of yourself.

Medical Marvels

2008-11-12T21:37:00.003-06:00

Here’s something new in the field of treating head and neck cancer. The November 8 2008 issue of The Economist magazine had an article on the use of nano particles being used in human trials at three Texas medical centers for treating head and neck cancer. 80 trillion particles are injected into one’s blood stream and they find their way to one’s tumor leaving your healthy cells alone. They find your tumor based on the unique properties of the tumor’s blood capillaries. The nano particles are then heated and the tumor dies. The article goes on to say that in lab experiments on mice the tumors disappeared in 10 – 14 days without any noticeable side effects. Here’s a link to the article…

http://www.economist.com/science/displaystory.cfm?story_id=12551598

It all sounds so promising. I hope we hear more about this as the human trials unfold.

As for me, things are okay. No new health issues. To wrap up a loose end from an earlier post, my health insurance company contacted me today and agreed to pay for my ongoing Avastin chemo treatment. It took a great deal of work on my part (with help from a few family members – THANK YOU) to educate the insurance company about my case and their contractual commitment. On the negative side, the action of my insurance company two months ago disrupted my then ongoing chemo cycle. What this means to me is if my cancer does come back, I’ll never know if it was due to this disruption, but I’ll always wonder. On the positive side, they did the right thing by now agreeing to continue with the treatments. It will be interesting to see if my doctor wants to go back to my prior chemo regimen or continue with the current wait and see approach. I’ll take his lead on this.

That's it for today. Thanks for checking in and take care of yourself.

Fixing Myself - One minor ailment at a Time

2008-10-31T23:47:00.002-05:00

I actually felt good today. Not just physically good, but also almost free of anxiety. Cancer brings on a lot of anxiety. Every ache and pain feels like a cancer recurrence. Two weeks ago I began the journey of trying to understand every physical issue that was bothering me. It’s a long list and I’m going to talk about each one. So, for those who don’t really want to read about someone else’s minor health problems, there is no need to read any further. But, for those of you that are in my situation or are helping someone like me, this may actually be instructive. In order of what has been bothering me physically, here goes. 1) A change in vision. 2) Lateral arm movement and shoulder pain. 3) Fatigue and always feeling cold. 4) An acute pain in my jaw that seems to happen about once every 4 months and lasts for 24 hours. The mind plays funny tricks on cancer patients. Being paranoid is not too strong of a term to describe it. Every one of these could be caused by some serious disease. I decided to attack each of these individually two weeks ago and to get some answers.

1) Vision – I had my eyes checked. My prescription glasses had not changed in decades. My eye doctor confirmed following my exam that my vision had deteriorated a little, but he saw no signs of eye cancer or eye nerve cancer. He prescribed a new pair of glasses in the 20/40 range. My anxiety about my eyes is now gone. I also have a new pair of glasses and my vision with glasses is 20/20.

2) Lateral arm movement and shoulder pain – I visited my family doctor. It was my first visit with him in over 3.5 years. I told him my concern about ALS (Lou Gehrig’s disease) or MS since it was attacking both arms and shoulders in a similar fashion. I asked to see a neurologist. He suggested an orthopedic surgeon. After listening to his reasoning, I agreed with him. I saw the orthopedic surgeon. He first did a full set of shoulder x-rays. Based on those findings he did an extensive MRI on each shoulder. We then discussed the results. He sees a slight tear in the tissue between my ball and socket in the shoulder on the right side and stiffness in both. Although he can’t rule out MS or ALS with this type exam, he felt strongly based on other patients that this was an orthopedic problem and not a neurological issue. He thinks a 10 minute procedure under light anesthetic, some shots into each shoulder and forcing a breakup in the stiffness via arm manipulation in each shoulder would do me wonders. I’m not ready for that, but I’m now anxiety free about this being a serious disease.

3) Fatigue and always feeling cold – I’m still on a daily chemo pill. My last chemo IV was August 18th (2.5 months ago). I really thought I should be feeling much better than I have been lately. While visiting with my family doctor he did some blood tests. He called and said one test showed a slow thyroid. My TSH (Thyroid Stimulating Hormone) was at 15. It should have been between .5 and 5. There is an inverse relationship between the count and a hyper versus slow thyroid. The higher the count, the slower the thyroid. I looked up “slow thyroid” on Google. The first sentence in the first site I visited said the primary symptoms of a slow thyroid were fatigue and feeling cold. I began a thyroid replacement medicine yesterday. They say it could take a few weeks for it to kick in. But, I’m no longer anxious about these symptoms. This is a very plausible explanation. One other point on this issue. When I received radiation treatment in mid 2005, my radiologist said that the radiation could actually cause thyroid problems and possibly even thyroid cancer 20 years down the road. At the time, I understood the risks and went forward with the treatment plan.

4) An acute pain in my jaw – I visited a local ear, nose, and throat doctor referred to me by my family doctor. Although my care at MD Anderson is superb, I wanted a really fresh set of eyes on this and a few others facial pain issues. After listening to me describe my symptoms, he described TMJ. TMJ is basically a facial muscle pain that can bring on the exact pain I was feeling. It is caused by trauma to the jaw which could be the result of an accident or surgery. We also talked about a way to address chronic pain left over from my July 2006 surgery. It is a nerve blocker medicine. If this nerve blocker medicine works I could then begin reducing and maybe even eliminating some of the stronger pain medicines that I take daily. I began this new medicine today. It too will take a few weeks to figure out if it works. Again, with a plausible explanation for the acute pain, my anxiety level is far reduced.

Here are the lessons to take away from the above. Break the problem down, address each methodically, seek appropriate specialists, and be proactive. I can’t tell you that there is not something seriously wrong with me. But today, I feel like a real weight has been lifted off of me for the first time in over 3.5 years. I don’t know how long this optimism will last, but it is so very welcome. I’m looking forward to the physical results of these new drugs over the next few weeks.

I hope this was helpful. That’s it for now. Thanks for checking in and take care of yourself.

Scan Results

2008-10-17T12:07:00.000-05:00

I’ll make this brief. The scan results for both my chest and head & neck showed no evidence of cancer. My next appointment will be in 4 to 6 weeks for a follow up. The last detectable cancer was removed from my body surgically on October 18 2007. That means I’m half way (1 year) through a period of “no evidence of disease.” If/when I hit the two year mark at this time next year without a recurrence, it will mean that I’m in remission. I think this is a great thing. But, as Gust Avrakotos (played by Philip Seymour Hoffman) in Charlie Wilson’s War said of the Zen master's statement, “we’ll see.” I’m just recently beginning to think longer term. More on this later as my thoughts and plans crystallize.

That’s it for now. Thanks for checking in and take care of yourself.

Scan Day is Over

2008-10-16T10:43:00.000-05:00

Hi. Another day, another scan. Yesterday went well from a timing standpoint. I left the house at 5:45 AM and beat most of the downtown Houston traffic. I had my blood drawn at 6:45 AM, a chest x-ray at 6:55 AM, and CT scans of the chest and head & neck (H&N) at 8:00 AM. The scan ended at about 8:30 AM. I then checked in for my clinic visit with my oncologist. At 9:30 AM my vital signs were taken and at 11:00 AM I saw my doctor. The preliminary scan from my chest CT was negative for disease. By preliminary, this means my oncologist’s interpretation, but not the radiologist review and sign-off. My oncologist did not feel qualified to give me a preliminary interpretation on the H&N scan. With the scar tissue from all the surgeries, he wants to leave that review up to the professional, the radiologist. The physical exam was clean; he thought I looked great. Here’s my point. Although scan day is over, it will be a day or two or three until the scan results are in. I’m mildly apprehensive and will bide my time until the news from my scan results are communicated to me. When that happens, I’ll share them on this forum.

Regarding the insurance issue presented in my prior posting, my doctor readily agreed to write an email to my insurance company articulating why this drug regimen (Avastin), which my insurance company denied covering for future use, should be covered. He hopes to send me that email within the next few days. The more I research this issue, the more strongly I feel that what the insurance company did was a direct breach of contract. I plan on submitting my own research along with my doctor’s assessment to my insurance company next week. This is the last step in the appeals process before civil litigation can begin. Depending on my insurance company's response, I'm reluctantly prepared to head down that road. Barack Obama has mentioned a few times how he saw his mom fighting with her insurance company while she lay dying in bed of cancer. I now know how she felt. Fortunately, I’m in better health than she was when this dispute happened and therefore have the strength and resources to fight it. But, it does raise a lot of ethical questions about insurance companies, drug prices, and even how much in dollar terms one’s life is worth. Because, in the end, it is not really about right and wrong, it is all about the money. And, in these tough economic times, who isn’t looking at their bottom line.

That’s it for now. Thanks for checking in and take care of yourself.

Scan Day and Insurance Issue Continued

2008-10-11T15:01:00.000-05:00

It’s almost that time again. I get a new scan this coming Wednesday on 10/15/08. It will be a CT scan of the head and neck using contrast. I’ll also get blood work and a chest x-ray. My tests will be followed by a clinic visit with my oncologist (hopefully he’ll have some preliminary good news from my various tests) and then a visit with the Supportive Care unit. It’s going to be a very very long day. I have a few new ailments which are bugging me. My vision has changed and I have a bump on my finger. Without cancer, both of these would be totally trivial. A visit to an eye doctor and my family physician would more than likely alleviate any concern. But, with cancer, every ailment, no matter how remote or trivial, takes on a greater magnitude of anxiety.

Other than my tests and clinic visit, I’m going to try and enlist my oncologist’s support to help fight my insurance company. Although the insurance company did the right thing by paying for all past chemo treatments, they did the wrong thing by denying payment for future use of my most recent chemo regimen. Here’s the problem. Chemo drugs are approved by the FDA for specific cancers. The drug companies target the common cancers because a drug which helps fight lung cancer (215,000 new cases per year) for example will have more customers than for non-common cancers. “Common” cancers are defined by the American Cancer Society as cancers which have 35,000 or more new cases per year. There are 13 of them (see reference 1 below). Head and Neck (H&N) cancer is not one of the 13. Since H&N cancer is not high on the cancer hit list, the number of drugs actually approved for its treatment is limited. However, once a drug hits the market (i.e., it has been approved by the FDA), doctors have a fairly high degree of discretion in prescribing that drug to treat other types of disease. Many of the professional medical people with whom I talk believe that H&N cancer cells behave in a similar fashion to those of lung cancer cells. So, when they exhaust their use of cancer drugs approved for H&N cancers, they may turn to lung cancer drugs. This is considered off label drug use. Drug companies are not allowed by law to market drugs for off label use, but doctors are allowed to use them for off label use when they believe they are medically necessary. That is what my doctor did for me back in December of 2007. But, my insurance company decided unilaterally to put a policy in place on 7/15/08 that made the use of this particular drug, Avastin, no longer reimbursable for off label use. What this means is that someone who has never met me and has only a superficial knowledge of my case is denying payment for future treatment when the chief of Head and Neck Oncology at one of the best cancer hospitals in the world has determined that this drug is medically necessary to treat my disease. The insurance company knows that research and drug funding for H&N cancers are minuscule when compared to the common cancers and that proving that a cancer treatment is useful for a specific cancer is a very expensive proposition. So, since my insurance company’s unilateral decision may have an impact on my future treatment and literally my life, I’m going to take my case to my oncologist and see if he will assist me in helping the insurance company see this situation from my perspective. My insurance has been good to me up until this point and I’m not out to make a national issue out of this. But, remember, this could happen to you. You’ve worked many years, you’ve paid insurance during all those many years and one day your insurance company says… you’re not covered even though your health plan documents say you are and your highly qualified medical professionals say this is your best chance at survival. This is scary stuff folks and should be taken seriously. On top of all this, I don't want to waste my oncologist's time with my insurance issues. I would much rather see him curing cancer. If anyone out there has any tips for me in this situation, please post them or send them my way.

That’s it for today. I’ll let you all know the scan results as soon as they have been finalized. Thanks for checking in and take care of yourself.

Reference(s)
1. http://www.cancer.gov/cancertopics/commoncancers

Current Status and Insurance Issue

2008-09-26T13:07:00.000-05:00

Hi. It has been awhile since my last post. Here’s what’s happening. I finished my Avastin chemo treatments on August 18 2008. That was my 11th and last treatment for this drug. My doctor had originally wanted to go with a 12th treatment on September 17 2008. Those plans changed when my health insurer decided they would not pay for it, the high cost of the treatment, and my doctor deciding that 11 was the lucky number. It’s actually a bit more complicated than this, but I felt okay with the outcome. I’m scheduled for my next scan on October 15 2008. I’m trying not on focus on that set of tests while hoping for the best and preparing for the worst.

I had a significant insurance issue that began 3 weeks ago. The issue is now resolved, mostly to my satisfaction, but it created a high degree of anxiety. Here it is in a nutshell. My insurance company paid for my first 9 Avastin chemo treatments. Before beginning these treatments, my doctors checked and said my insurance would cover them. I was always a bit bothered by how expense each treatment was. On 9/8/08 I received an Explanation of Benefits letter from my insurance company that excluded the Avastin drug that they had previously paid for 9 times. The treatment for the drug delivered on 7/16/08 (my 10th treatment) was not covered. Upon calling my insurance company, I was informed that they would not pay for my prior treatment on 8/18/08, nor any future treatments with this drug for my type of cancer. After carefully reading my 370 page health SUMMARY plan document (get it, 370 pages is the summary), I came to the conclusion that this treatment was definitely covered. It was a chemo treatment and an FDA approved drug. I called my insurance company and after a few discussions came to find out that they put a new internal policy in place on 7/15/08 (one day before my denied 7/16/08 treatment) that excluded coverage of this specific drug for off label use. They told me I could find it on their website under “Providers,” under “Policies,” and then searching for some obscure drug code. After a dozen phone calls, emails, faxes, etc. later, over a 2+ week timeframe, my insurance company decided to do the right thing and pay for my 10th and 11th treatments. I think they reached this decision based on paying for the first 9 treatments and not providing any notice as to a change in their internal policy. The power that they have to place a new policy into effect for a specific drug that is clearly inconsistent with the 370+ page summary plan document is downright scary… as if people don’t have enough to worry about these days. There were many restless nights filled with stress and high anxiety around this whole experience. The lesson learned for me in this is to confirm all expensive treatments in advance directly (and by that I mean directly and take names, dates, and notes) with my insurance company.

On a more positive note, I’m feeling relatively well, continuing to work on my speech by practicing talking in front of a mirror, trying to enjoy each day, and doing some projects around the house. If this upcoming scan is clean and then the scan after that is clean (January 2009), I will begin thinking longer term.

That’s it for today. Thanks for checking in and take care of yourself.

Wow!

2008-08-27T09:12:00.000-05:00

Although Leroy Sievers has left us, his NPR blog lives on. If you haven’t already seen today’s (08/27/08) blog entry, it is really worth the trip. http://www.npr.org/blogs/mycancer/. It was written by his oncologist, Dr. Joe Herman. Dr. Herman provided wisdom that all patients (cancer and otherwise) should take to heart… ask questions and understand your options and consequences.

Reading Leroy’s blog today prompted me to write the following paragraph. The standard of treatment is constantly changing. What wasn’t a standard last year may be a standard today. In an ideal world, the most successful treatments would be adopted by all medical professionals immediately. But we don’t live in an ideal world and the time to adoption is not instantaneous. Take the time to research your condition and then come prepared when you meet with your doctor to ask the tough questions, push the envelope, and understand your options. Good doctors will listen to you, provide honest feedback on your queries, and most important, respect your wishes. In Cancer World there are not always clear cut results and directions. It’s no different than many other decisions one has to make; moving forward with imperfect or the lack of full information. Much of what happens in Cancer World is outside of one’s control, but that leaves a portion which is within one’s control. As a patient, it’s your life and you have the obligation to yourself to take the initiative and exercise that which you can control.

My hat is off to Dr. Herman for writing so powerfully today about the role a patient can take in his or her own treatment.

Take care everyone.

Appointment Scheduling

2008-08-26T21:48:00.000-05:00

About a year into my cancer journey I decided to spend as little time and make as few trips as possible to the cancer center. Life already felt shortened. I can’t imagine my tombstone inscribed with the words, “I wish I had spent more time traveling to and being in the cancer center.” Please don’t get me wrong, there are great, dedicated, generous care givers and professionals at the hospital; I’d just rather be some place else.

My next set of appointments is in mid September. I have 6 appointments. Up until yesterday, they were spread over 3 separate trips within a 10 day period. It took some work (many emails and some diligence), but I now have all 6 appointments scheduled on the same day. It will begin with a blood draw, then a trip to dental oncology to assess my mouth device (which is working out great by the way), followed by a visit to the oncology clinic, a post surgery checkup, the supportive care unit, and then chemo. Sounds simple doesn’t it? Some appointments may start late and as a result others may have to be rescheduled, but the plan is to knock them all out in a single day.

The truth is that although I’m not really in charge, some days it feels like I am, and that makes me feel good.

Take care everyone.

Pain Management

2008-08-25T09:37:00.000-05:00

One thing that you learn from cancer is pain, pure and simple. I’m quite sure that my physical pain threshold has increased 2 to 3 times over the past few years. We’re constantly being asked by our medical professionals to rate our pain on a 0 to 10 scale with zero being no pain and 10 being the worst pain imaginable. The pain may be due to the cancer, the treatment, a weakened immune systems, growing older or any combination of these factors. With pain comes the business of pain management.

I had some success with a new medicine this weekend. Last Monday, the Supportive Care group at my hospital prescribed a new medicine to treat severe headaches. These are not “take two to four Advil and go about your business” type headaches. These are “48 – 72 hour stay in a dark room with low light, no noise, and a cold wash cloth on your forehead” type headaches. I’ve tried many different medicines to treat these headaches in the past. Both over the counter and prescription drug opiates. Nothing helped… until yesterday. I took a drug for migraine headaches and 90% of the headache went away. I ended up taking two doses about 6 hours apart. This medicine allowed me to read 200 pages in a great book (Bringing Down the House – the book the recent movie 21 was based on), watch a little TV (the final installment of “Generation Kill” on HBO), play a few games with my daughter, and even have a brief visit with a friend. Compare that to lying in bed with pain and I’d have to call it a success.

I was very hesitant to try this medicine. The possible side effects scare me. Here they are. “CONTACT YOUR DOCTOR IMMEDIATELY if you experience wheezing, tightness in your jaw, neck, or chest; chest pain; heart throbbing; unusual vision changes or loss of vision; severe stomach pain; or bloody diarrhea.”

It’s one thing to sign the consent forms at the hospital before an operation or a new chemo regimen with all the possible side effects including death, but to do it at home with an unknown medicine freaks me out.

The moral of this story is to continue to work with your medical team to make the most of what you have. Maybe you too with be fortunate enough to find a treatment that will make life easier, even if for one day.

Take care everyone.

Leroy Sievers

2008-08-18T01:01:00.000-05:00

Another member of the cancer family has left us. Leroy Sievers at age 53 passed away on 8/15/08. Here's a link to his NPR blog site.

http://www.npr.org/blogs/mycancer/

Leroy and the community he created with his blog taught me that life is short and to enjoy each pain free day.

Here are links to Leroy's obituaries in the Washington Post and New York Times:

http://www.washingtonpost.com/wp-dyn/content/article/2008/08/18/AR2008081802190.html

http://www.nytimes.com/2008/08/19/arts/television/19sievers.html?_r=1&oref=slogin

Take care everyone.

Me and My Cancer

2008-08-08T17:35:00.000-05:00

I won’t keep you all in suspense with the blog title; I’m feeling good, my cancer had not returned. But, I’ve been having some trouble getting a good night’s sleep lately despite the medications that have worked so well up until now. I seem to wake up at 2:20 AM each morning and then have difficulty falling back to sleep. This morning at 2:20 AM I started thinking of that old song sung by Perry Como, “Me and my Shadow.” It’s a sad song and just like my shadow, the cancer never seems far away. Sometimes it’s there, sometimes it’s not. And, even when it’s not there, I know it will return.

I’ve mentioned this before, but feel it worth repeating. My current status is “no evidence of disease (NED)” and I’ve been in this status since October of 2007. I think they used to call this remission, but now it’s NED. Remission will begin when I’ve been in a NED status for two years straight. At the 5 year mark, they considered you cured. For me, that would truly be remarkable!

Since I’ve been feeling well, I’ve been enjoying myself with visits, friends, family, and even some short trips. In July I took my 2nd plane trip in 19 months; the 1st plane trip was early this year and left me in bed feeling ill for weeks after I got home. This compares to a before cancer state of traveling about twice a month. Not that there is any question (or any choice), I’d take the before cancer state every time.

For those of you that follow Leroy Sievers periodically at the NPR website, http://www.npr.org/blogs/mycancer/, he’s been having a tough time of it. It sounds like he is having trouble moving around the house, getting rest, and is thinking seriously about hospice care. My best wishes go out to him, his family, and support network.

Enjoy yourself. Life is short. Take care everyone.

Randy Pausch

2008-07-25T19:32:00.000-05:00

Life for another member of the cancer family came to an end today according to this article from Bloomberg.

http://www.bloomberg.com/apps/news?pid=20601103&sid=a0cfNQ5UPl2o&refer=us

Randy was diagnosed with pancreatic cancer in mid 2006. He became famous when he delivered his "Last Lecture" at Carnegie-Mellon University last September.

I read his book which was given to me as a gift recently. The book far exceeded my expectations. After all, who needs yet another book about cancer. But, the book wasn't about cancer. It was about how he realized his childhood dreams. There were many excellent life lessons in the book.

It is also a grim reminder that no matter how smart, rich, popular, loved, innovative and determined you are to beat this disease, sometimes the disease wins. Randy left a terrific legacy for his 3 young children by leaving behind his story such that he might be able to guide them as he would want as they grow older.

Take care everyone.

Chemo Cycle 9 Round 10

2008-07-17T13:23:00.000-05:00

Yesterday was my 10th round of chemo cycle 9. For the sake of clarity, that means that this is my 9th chemotherapy drug (or drug combination) and yesterday was the 10th administration of that drug via an IV. This cycle counting does not include the chemo pill that I take daily. To say that they have thrown everything at me including the kitchen sink would be an understatement. But, it seems to be working. The pain that I had and wrote about last Friday subsided on Saturday. I talked to my chemo doctor about it yesterday. I see him in clinic before each chemo round. He wants to make sure I’m still healthy enough to proceed. He said I looked great and although the pain was bothersome to not worry about it. There are no new lumps and bumps so the chance that an ultrasound would turn up anything was too slim to warrant the test. It was a long day yesterday. I waited a little over two hours to see my primary chemo doctor and then almost 5 hours after that to have the chemo orders get from the chemo clinic to the chemo room with the medication. Needless to say… a lot of waiting. Waiting is just part of the “living with cancer” protocol. One gets used to it and makes the best use of their time as the clock tics.

The plan: Two more rounds of this chemo, then another scan (maybe one that covers the full body versus just the head and neck area). That will place me in the mid-September timeframe. If that scan is clean, then I’m pretty sure my doctor will want to stop the chemo. If it’s not clean, that means the effectiveness of this chemo has reached its limits and we’ll have to regroup. At this juncture, that seems like a good plan.

Chemo factoid: Most of you probably thought, as I did until recently, that the chemo drugs are mixed into a liquid solution by the pharmaceutical companies and delivered to the hospital. The reality is that the drugs are delivered in powder form to the hospitals and the pharmacy mixes them based on the exact prescription supplied by one’s doctor. The doctor takes into consideration the patient’s weight, health, side-effects, tolerance, and drug goals in determining how much medication to deliver in each round.

Take care everyone.

Am I Angry?

2008-07-11T16:34:00.000-05:00

This is one of the benefits of having good friends or others that are close to you. They ask the really tough questions. They are questions that others may be thinking or wondering. Or, if they’re not close or they haven’t given it much thought, it’s not even on their radar. I’ve had a good three weeks until today. Today, I woke up with what feels like a pinched nerve in my jaw/cheek area (very close to the location of my most recent tumor removal) and it’s causing pain (electricity like) across the low left side of my face, jaw/teeth numbness, and most importantly a high degree of anxiety. I was with a friend today and he asked me how I have dealt with all this cancer stuff (he said it a little more diplomatically). I explained that it was frustrating and at first denied that it made me angry. But, with a few minutes reflection, I said, you know what, it does make me angry, it has robbed me of much of the happiness in my life. It should have been a glorious day. We were playing golf. The sun was out. It wasn’t too hot. The course was beautiful and in great shape. There was no one holding us up in front. There was no one pushing us from behind. My golf game was reasonable given that I only began playing again last month after almost a year off. I had some terrific shots. But, I was angry and annoyed by this new pain.

It ruined a perfectly beautiful day.

Is it a new tumor pushing again a facial nerve? Is it a new tumor growing on a facial nerve? If it is, what will they recommend? Will it be surgery that will cut a major facial nerve? The thought of that is too depressing to think about. I’ve been fortunate compared to others and have escaped major deformities. This would surely lead to some deformities, plus more difficulty talking and eating. Both of which are already difficult. My next clinic visit is Wednesday. I’ll ask my doctor what he suggests. I’m thinking an ultrasound of the area may provide some insight followed by a biopsy if the ultrasound turns up any suspicious areas. Or, maybe it will just go away. Wouldn’t that be nice.

If you haven't seen the "Bucket List" with Jack Nicholson and Morgan Freeman, I recommend it. It's about how two people live through the last year of their life with cancer. At one point during a difficult treatment period, Jack Nicholson says, "some lucky person out there is having a heart attack." It's sad, funny, and ironic all at the same time. They did some good research for this film.

Take care everyone.

Physical Therapy

2008-06-26T05:50:00.000-05:00

I began working out on a more regular basis about 2 months ago. By more regular, that means 1 to 3 times per week. I used to work out every other day and am trying to build back up to that both physically and emotionally. I noticed a few weeks ago that some of my muscle groups had atrophied. This included my shoulder muscles and the strength in my right leg and hip. My other muscle groups: arms, abdomen, neck, etc. seem quite fine. I visited with my physical therapist yesterday. She took about 50 – 75 measurements on range of motion and strength. She’s been doing this for about 20 years and is excellent. She confirmed scientifically what I had been feeling physically and is now working on an exercise plan to strengthen areas in need of help. The question of how this happened will go unanswered. My guess is a combination of the lengths of my immobility (caused by the disease and treatments) and the chemo drugs.

What I’ve learned through all this is to not ignore persistent symptoms, even those that one can work around or are not that painful. If you need help and have the resources to get it, there’s no reason to put it off.

Take care everyone.

Thank you…

2008-06-21T15:34:00.001-05:00

for all the well wishes… phone calls, emails, and visits regarding my scan results. We’ll be playing a balancing game from here on out with my chemo regimen. I suffered a severe debilitating headache on Thursday and part of Friday. Probably chemo related, but one never really knows. I can live with a headache for 2 days a month for a long time if it were to mean that the cancer would not return. But, no one really knows that either. I’m currently scheduled for 3 more chemo treatments 4 weeks apart. That will bring us to mid-September. At that point, we’ll reassess my health and options and go from there.

Take care everyone.

Scan Results

2008-06-18T15:01:00.000-05:00

I had my CT scan yesterday, June 17th. My daughter joined me for the day at the cancer center. Her company was my father’s day gift. She got me some other neat stuff, but her joining me for a day at the cancer center was the gift I asked for. She got to see me wait, then blood drawn, then a peak behind the curtain at a cancer research lab, then waiting, then waiting some more while I had an IV put in and the CT scan taken. The IV is used to shoot iodine into my veins and acts as a contrast during the scan process. It was about 7 hours start to finish. It was a typical day for me at the center and hopefully a bit of an education for my daughter.

It's now June 18th and I’ve been waiting for an hour and a half to see my oncologist and hear the news of yesterday's scan results. I’m apprehensive. I’ve been feeling good lately, but that doesn’t provide much of a leading indicator as to the actual scan results. Feeling bad would be an indicator. But, feeling good is neutral in my book. I feel like flipping a coin or something as I wait. Heads I’m good, tails I’m bad. I just looked for a coin and don’t have one on me. I’ll see if I can borrow one from someone. One of my nurse friends had a quarter. I flipped it and it came up tails. I shouldn’t have done that. Now I’m even more apprehensive. This waiting is killing me. Tic, tic, tic. I’ll write more in a little while.

It’s now about 20 minutes later and I just met with my doctor’s physician assistant. Stupid coin toss. It was wrong. The preliminary scan results came back and said, “There is no definitive evidence of tumor recurrence.” That’s the best news I could hope for. With all the surgeries and scar tissue, the scans are difficult to interpret. But, any other news would be bad news. So, there you have it. I’m going to continue chemo for another 4+ months depending on my tolerance to the drugs. It’s been working so far and we’d rather err on the side of caution. My surgeon and oncologist, plus a friend in the lab, are almost as excited about this news as myself. It’s not time to say “we won,” that flag won’t be flown until I’m out 2 years from my last cancer recurrence in October 2007. This does however allow me to begin thinking longer term. So, stay tuned.

Thanks for checking in and take care everyone.

Drug Side Effect

2008-06-12T07:31:00.000-05:00

I called the Supportive Care unit at my cancer center yesterday. I wanted them to know my vision had become slightly fuzzy over the past week or two and wondered if that was a side effect of my new medication and if so, was it serious. They were surprised that I was having this side effect at such a low dosage (it is more common in higher doses), so they asked me to stop taking the medication to rule out other causes for the blurred vision. I stopped it last night and this morning my vision is back to normal. I’ve decided I’m pretty susceptible to many drugs; maybe that was why I had an allergic reaction to Cetuximab a year+ ago. Well, eye vision issue probably solved. I’ll wait a day or two more to make sure.

Stay healthy and take care everyone.

Scans, Depression, Leroy Sievers, and Lee Child

2008-06-09T16:04:00.000-05:00

Hi. I’ll comment on a few subjects today. They may seem somewhat random, but they are all on my mind.

1) Scans. I have a CT scan on June 17th. I’ll get the scan results the next day. I’ve been feeling relatively good since beginning my antidepressant medication on May 21st (almost three weeks ago). But, I’m also a bit anxious, especially after reading Leroy’s blog entry today. At this point, I’ll just have to wait, hope, and see.

2) Depression. It’s an odd disease. A friend of mine had severe depression and told me about it, but one doesn’t comprehend what it is (at least I didn’t) until I had it. For anyone out there who is depressed (or thinks they may be depressed), get help! What could it hurt to talk to a professional and try assistance? Different therapies will work better than others for each individual. They range from counseling, to medication, and a combination of the two. If you had a headache, you’d take aspirin. If you sprained you ankle you’d see a doctor. So, ask yourself why depression should be treated any differently. See a professional this week. Make it happen. BTW – per my last post on May 22nd, the drug I’m on does make dreaming much more vivid. As such both good dreams and nightmares are part of the package. Vampires. Can’t live with them, can’t dream without them.

3) Leroy Shivers. I’ve wrote about his blog many times. It can be seen at the following url: http://www.npr.org/blogs/mycancer/. Today’s entry is “The Disease Has Exploded.” He’s been battling cancer on somewhat the same timeline as me. He had some major set backs 6 – 9 months ago with cancerous spinal tumor recurrences and multiple surgeries. His attention has been drawn to recuperation since then and not much on the disease. His scan’s from late last week revealed that the cancer is back with a vengeance. Brain, lungs, bone, liver, etc. I’m guessing he is scared and feels he is running out of options. I empathize with him and hope for the best. I’m not sure what the best is for him at this point. I’m pretty sure he’ll tell us when he knows and is ready.

4) Lee Child. This is on the lighter side. Lee is a British author. I began reading his books about 4 – 6 months ago. I finished his 11th and last book last month. However, his newest book came out in the U.S. on June 3rd. I went to his book signing in Houston on Sunday. He spoke for about 20 minutes and then answered audience questions for 40 minutes. It was held at a small bookshop and over 150 people showed up. It had to be a fire code violation. Okay, now back on track. He was thoroughly entertaining. I’m looking forward to reading his 12th novel. It’s the first one that I bought in hardback. For “Jack Reacher” fans… he is in talks with Tom Cruise about a movie deal. Tom Cruise would be the executive director, not the main character, Jack Reacher. Stay tuned to this exciting author.

Remain healthy and take care everyone.

Dreaming the Nightmare

2008-05-22T20:07:00.000-05:00

This blog entry’s title is somewhat a play on words for a phase I keep thinking about, “Living the Dream.” I thought at this time in my life, I’d be “living the dream.” After all, I’ve had a good life. Unfortunately, that’s not what has happened. Instead, I began taking an antidepressant, Mirtazapine. Here’s the interesting / funny part, one of the potential side effects is nightmares. An antidepressant that gives you nightmares! Think about that. Believe me, I couldn’t make this stuff up if I tried. So, instead of “Living the Dream,” I’m “Dreaming the Nightmare.” In low doses, this drug acts as a sedative which in turn helps one sleep. That’s a good thing as sleep is an issue for me. But, the mind doesn’t stop while one sleeps. Now, this part I’m making up, or if you give me the benefit of a doubt, taking an educated guess. Since those that are depressed or anxious can have dark thoughts, this drug helps you sleep through them, but the result is a forced sleep while having dark thoughts. If you put the two together, you end up having nightmares. Since I just began this drug yesterday, I don’t know yet how I’ll react or what side effects it may produce, but whatever it is, I’m looking forward to the experience in some inexplicable way. It may be that I like trying new things, even those with unknown outcomes.

Stay healthy and take care.

I Think?

2008-05-21T13:44:00.000-05:00

I’m usually pretty sure of myself. But, I’ve written a number of “I think and I don’t think” statements in this post, which means, I’m not really sure. I think I have become a bit depressed. I’m at the cancer center today. I will receive round 8 of chemo cycle 9. I will also be seeing a doctor that may prescribe a mild anti-depressant. I don’t think my state of mind is unusual given my circumstance. One may assume it could be due to my low-level chronic pain, the not feeling well at times, or my disabilities. I think those are contributing factors, but not the main factor. What I’m most frustrated by is the short term “not knowing.” Not knowing how I’ll feel in the morning, not knowing how I’ll feel in an hour, and not knowing how I’ll feel tomorrow. I’ve given up on a time horizon further out than the here and now. As such, planning and committing to any activity, whether social or otherwise, is very difficult. This results in a desire to plan “absolutely nothing.” If you stop and think about that, the ability to not plan anything is depressing. I don’t think I’m depressed by not knowing my longer term prognosis. Every day I wonder if my cancer is back. I have a new pain in my left jaw that feels suspicious. My oncologist is a bit concerned by this as well. He’s scheduling me for a CT scan in 4 weeks. But, I’ve learned to live with the reasonable possibility that my cancer may return. So, I think it’s really the shorter term aspects of this situation that are depressing me. In the long term, as the saying goes, nobody's getting out of here alive… and that I can live with.

By the way, I began this blog just over a year ago and this is my 100th posting. I hope you’ve enjoyed reading it (and learning from it) as much as I’ve enjoyed writing it. Thanks for checking in. Stay well.

How People Feel About Cancer

2008-04-30T08:46:00.000-05:00

This will be very short today and is a follow up to yesterday’s posting. When Leroy Siever’s of NPR asked people to finish the sentence that began with, “My cancer,” 276 people responded. The responses came from cancer patients, family members of people who have or had cancer, people who were afraid of getting cancer, and those who wanted to understand the disease. Although, at times, I find some of the responses Pollyannaish in the posts that people leave on Leroy’s site, yesterday was an exception. I read (or at a minimum skimmed) each and every post. They ranged from thankful for the lessons learned to living in dreaded fear for the loss for themselves or a loved one due to the disease. There was unabashed honesty throughout the comments. They ranged in size from a few word phase to a page of text. If you’d like to better understand how cancer affects people, I encourage you to go to the site referenced below, find the April 29 2008 entry, and read through the 276 comments. It’s free and no login or password is required.

Reference – Leroy Siever’s NPR Blog
http://www.npr.org/blogs/mycancer/

My Cancer...

2008-04-29T10:34:00.000-05:00

It's my anniversary today. No, not my marriage anniversary, my cancer anniversary. Three years ago today on April 29 2005 I was diagnosed with cancer. I was going to write a long blog about it. However, after reading Leroy Siever’s NPR living with cancer blog (see reference) this morning, I changed my plans. He asked people to post a comment on his blog today that finished the sentence that began with the words, “My cancer.” Here’s what I wrote.

My cancer has paralyzed my life due to my disabilities. It has taken away so many things that I used to enjoy... eating, the ability to plan future activities and commit to them, traveling globally, working intensely, participating/hosting fun social gatherings, scuba diving, golfing, working out, and communicating verbally comfortably. I can still do some of these activities some of the time, but not with the pleasure that I was able to do them before cancer. It has also taken away my spouse’s ability to enjoy many of the activities we used to so much enjoy doing together. It has not been easy on either of us.

My cancer has allowed me to spend more quality time with my daughter and help her with homework and when asked, social situations. She's now a teenager and knows everything by the way. But, she humors me and still asks for advice occasionally. I’ve been thrilled to spend this time with her and help her become wiser in the ways of the world. This is time my cancer doctors didn’t think I would have 2 years ago. It has also shown me great friendships and compassion from so many people including family, friends, and medical professionals. This has taught me to be more compassionate, generous, and thoughtful at times.

Although cancer has made me wiser and smarter in a few very important ways, I would trade it in a minute for the life I had before the words I heard for the first time 3 years ago today on April 29 2005, “you have cancer.” I miss my old “normal.” My new “normal” is something I do the best I can with daily, but each day is a reminder of the good times I had and the things that I‘ve lost.

That was the end of my post on Leroy's blog today. My advice to all of you, enjoy every day and don't take anything special for granted. By the way, although today is my anniversary, it's not the type of an anniversary that one celebrates.

Reference – Leroy Siever’s NPR Blog
http://www.npr.org/blogs/mycancer/

Another Day, Another Infusion

2008-04-23T20:35:00.000-05:00

First, I’d like to thank those that posted comments on the last blog entry... The Truth About Cancer on PBS. I talked to and exchanged emails with a few other people who saw the show, but that didn’t post comments. Everyone thought the show was exceptionally well done and sobering.

I had Round 7 of chemo cycle 9 today. It went quite well. They have called in the special “IV Team” the last two times to get my IV started. This is a group that works with patients who have smaller hard to hit veins. The nurse taking care of me examined my arms for about 20 minutes and then said he felt more comfortable with letting the IV team take a shot. No pun intended. They got my vein on the first try with almost no pain at all. They used a 24 gauge needle which is quite small. Hooray. The infusion was finished in about an hour. I also saw three specialists from the Supportive Care unit. A nutritionist, a psychologist, and a doctor team. They are all phenomenal caring people expert in their respective specialty areas. We discussed in some depth pain/anxiety, pain/anxiety medication, and alternative treatments. For now, we’re sticking with my current pain and anxiety regimen. Lastly, I spoke to my friend in the lab and had a nice catch up. I left the house at noon and was home at 7:00. There was little downtime and it felt productive.

What I’m really excited about though is not having to do this again for 4 whole weeks. That’s the plan and I hope to be sticking to it.

Take care everyone.

The Truth About Cancer (PBS) - My Thoughts

2008-04-17T13:20:00.000-05:00

I watched this 2 hour documentary on PBS last night. For those who didn’t see it, here’s a brief recap. It followed four patients through their cancer ordeal. They had leukemia, lung, pancreatic, and I think the fourth had breast cancer. It provided an honest chronology about their disease progression, their relationships with their families, friends, and care givers, and for 3 out of 4, their demise. Two of the three died. I wasn’t quit sure about the third. But if he was still alive, the leukemia had returned and it didn’t look good for him. It also talked about advances over the past 50 years. The last half hour was a panel discussion with 4 doctors who had had cancer and was led by a moderator who had had cancer. The special was sobering, real, and well done. Unfortunately, to make it so, it couldn’t have a happy Hollywood ending. As such, it may not be a hit. It was much more insightful than the 60 Minutes Cancer segment which aired last Sunday night. In 60 Minutes defense however, the purpose of the stories were quite different.

If you did see the show, I’d be interested in your thoughts on the show by you posting your comment on my blog. I changed the blog setting today to allow for anonymous comments. I think this means you no longer need a Google ID (and no longer have to log in) to post a comment. When posting a comment, click on the "Anonymous" radio button below the comment box. We'll see if this works.

I’ll highlight the top five ideas, concepts, and impressions I took away from last night’s PBS special.

1. Cancer does not discriminate and it doesn’t fight fair. It can strike anyone at anytime. Cancer is a catch all phase for the general condition of cell mutation gone wrong with no natural way of stopping the rogue cell division. It is really many different diseases and they have to be fought in different ways.

2. I was emotionally upset by each of the patient’s stories. But, the one with pancreatic cancer resonated with me the most. She had a strong support network (friends, family, care givers), she tried to do everything she could to beat the disease, she was realistic, and she tried living each day to the fullest (even near the very end). It was this last point that really got to me and one I would like to try to emulate. A day without pain is a good day and one should embrace it. Also, it doesn’t matter how strong one is or how much they are willing to fight and endure, sometimes the cancer wins.

3. I was very moved by the doctor’s story on his 50 years in treating children with leukemia. He said that 50 years ago, they had no idea what they were doing with the drugs and the child was lucky to die quickly. There were almost no survivors. 50 years later, there is an 85% survival rate 5 years out. He said to his class, and I’m paraphrasing… 50 years ago, they used to celebrate when just one kid made it. Now, doctors cry when one kid doesn’t make it. That’s real progress. He did say that within that 85% survival not all survivors where without serious side effects. Once again, sobering.

4. Cancer research is slow tedious work. One doctor talked about extending median life expectancy in months as significant. He said when you add a few of these together, you can get a year. Although 9 out of 10 drugs in phase I trials never make it to market, every drug on the market was in a phase I trial at some point. I guess I had thought about that before, but this helped bring some clarity to that line of thought.

5. The doctor panel was okay at the end, but it didn’t blow me away. I noticed that none of the panel had the less treatable cancers such as pancreatic or lung cancer. I suspect they couldn’t find any of them, they were probably dead. They did make a few good points. Cancer support should not end with the fatal diagnosis. It’s important to properly transition the patient to the right support team at that time such as hospice.

I applaud PBS for this outstanding piece of journalism.

On a separate subject, I read comments from a few different cancer blogs. It’s surprising to me the people out there believing in the conspiracy of the drug companies to kill any promising cancer treatment advances which don’t directly benefit them. Having been in this for 3 years now, I find their comments without merit and naive. There are too many dedicated, committed, compassionate doctors and researchers out there to allow this to happen.

If you’d like a DVD copy of the PBS show, you can order one and support PBS by going to the following URL…

http://www.pbs.org/wgbh/takeonestep/cancer/

Take care everyone.

My Day at the Cancer Center

2008-04-16T18:23:00.000-05:00

It was a good day at the cancer center today. I had 4 appointments. I had my blood drawn in preparation for meeting with my chemo doctor, met with a nurse psychologist to discuss my current mental outlook, and then saw my chemo doctor. There was zero downtime. Every appointment went like clockwork. My doctor said I looked great, my lungs are clear (I was a bit concerned given this flu-like illness I’ve had for the past two weeks), and he did not see or feel anything suspicious. I asked what he thought about giving me an additional week off before I receive another chemo treatment such that I could further recover from this flu-like illness. He thought it would be a great idea with minimal risk. He also wants me to move to an every 4 week IV treatment cycle from the current 3 week cycle. So, although it means going back down there next Wednesday, I really look forward to the reprieve in this week’s chemo treatment. With my chemo for the afternoon cancelled, I took the opportunity to visit with a friend in the cancer lab. We had a terrific catch up. I left the house at 10:00 AM and was home by 3:30 PM. How great is that? We must enjoy the victories when they happen.

Take care everyone.

P.S. Don’t forget to watch The Truth About Cancer airing at 9:00 PM ET on PBS tonight. It will be a good show.

Miracle Cure or Hype?

2008-04-15T11:13:00.000-05:00

There was a story about the “Kanzius Machine” on the 60 Minutes news show this past Sunday night. It was also front page on Yahoo yesterday. (See reference 1 for the full written story and 13 minute video replay). Its claim was that a radio executive / inventory with cancer had invented a potential new form of cancer treatment that would have no adverse side effects. Both MD Anderson and the University of Pittsburgh Cancer Institute (UPCI) are aggressively testing this new machine. Both cancer centers have begun animal trials and it has destroyed large solid mass tumors in mice without harmful side effects. Human trials were estimated to be at least 4 years away.

The machine uses radio waves which are harmless to the human body. It uses nanotubes filled with metal injected into the tumor site. I wrote about nanotubes in my blog entry on November 4 2007. Please see that entry for a primer on nanotubes. They are fascinating. The radio waves heat up the metal in the nanotubes and kill the cancer cells without harming the surrounding tissue.

This has great potential. The part of the story that was down played was the difficulty of finding a nanotube with a substance on it (an antibody) that could seek out just the rouge cancer cells. It is these undetectable rouge cells that sometimes metastasize in another organ and then sometimes eventually kill the patient. Also, many tumors are poorly differentiated… meaning they are not rigorously defined with clean edges like a marble. They have tentacles like an octopus that can stretch to areas away from the primary tumor site. That’s why surgeon try to cut enough away to get clean margins during cancer surgery. Finding the rouge cells was mentioned as a challenge to be overcome in the 60 Minutes story, but the seriousness of the challenge went understated in my opinion. Researchers have been looking for ways to direct chemo drugs to just the rouge cells for years, maybe decades. Once the chemo drug finds the cell, it must then find the right pathway to get inside the cell to destroy it. Nanotubes may have an advantage here. If they can adhere to the outside of the rouge cells (without the need to find a pathway to get inside the cell), the nanotubes can be heated and the cells may be able to be destroyed from the outside. This would be a truly remarkable advancement.

I was encouraged by this new device. It will not be an immediate panacea in the war on cancer, but it has the potential to be an important and powerful tool in the cancer war arsenal over the next decade. One downside that crossed my mind was for people like myself that have metal implanted in them. Would a treatment like this be able to differentiate between metal implants and the metal in a nanotube? Miracle cure or hype? Stay tuned, I guess we’ll find out.

Take care.

Reference
http://www.cbsnews.com/stories/2008/04/10/60minutes/main4006951.shtml?source=RSSattr=HOME_4006951

PBS -The Truth About Cancer (April 16 2008, 9:00 PM ET)

2008-04-12T00:01:00.000-05:00

I have been reading reviews about this upcoming special. The program is not for everyone. It is not a story with a happy Hollywood ending. It is a story, as the title suggests, about The TRUTH about cancer. There are a few cancer blogs that I read. The best is the one by Leroy Sievers, also of PBS. There are 50 – 200 comments per day from cancer patients, care givers, loved ones of people who have died of cancer, and others who want to understand this disease. All of the comments are well meaning. There are at times a Pollyannaish cheer leader mentality to them… great job Leroy, you can do it, you’re the man, go in the hole (oh yea, that’s golf – sorry, I digress), etc. In a very polite way, I have posted comments to the contrary a few times. Sometimes, it’s not how strong we are or how hard we try, cancer is going to win. This PBS show will expose that side of the cancer equation. And, for those people living on that side of the equation, why should society make them feel like they are giving up? Society does, but it shouldn’t. This show will help us understand that side. I haven’t seen the show, but I’ll go out on a limb and give it a 5 star rating.

Here’s what PBS wrote as an intro to the special… What is the truth about cancer? Is it the same deadly killer it was 30 years ago -- or are we making progress? Find out through the poignant stories of patients battling the disease in The Truth About Cancer premiering nationally on PBS Wednesday, April 16 at 9:00pm ET (check local listings). Comprised of a 90-minute documentary followed by a 30-minute panel discussion, the two-hour broadcast event takes a look deep inside the cancer field gauging how far we have come in this decades-old war and asking, "Why does anyone still die of cancer?"

It will be interesting to see how this PBS special compares with a PBS special aired on September 25 1998. Almost 10 years ago. That special called, “PBS Covers Cancer: A Message of Hope” focused on treatment advances and new hopes. I suspect the special airing this coming Wednesday will also touch on these topics, but while doing so, it will be more balanced.

Take care.

Prognosis Statistics

2008-04-11T11:25:00.000-05:00

After my last blog entry, I began wondering (to myself), how statistically fortunate am I to have survived this long after my initial diagnosis. With Google in one hand and an inquisitive mind in the other (as they say, inquisitive minds want to know), I set off to answer this question.

A fine needle aspiration biopsy on April 29 2008 will mark my three year anniversary since my initial diagnosis. But, my lymph nodes started to become swollen in January 2005, 4 months before my diagnosis. So, I’m somewhere in the 3 to almost 3.5 year survivorship range. Knowing what I know now, I found two helpful websites to help answer this question.

The first website was one that further defined the stages of squamous cell carcinoma of the head and neck (SCCHN). It looked at primary tumor size, localized lymph node involvement, and further area metastasis. It rated each of these factors. (Reference 1). I’m taking an educated guess at some of these, but here is my assessment:
- Primary Tumor (T2) – Greater than 2 cm, less than 4 cm
- Lymph Nodes (N2, but maybe N3) – Evidence of movable or fixed local lymph nodes
- Distant Metastasis (M0) – No evidence of distant metastasis

In summary, I had stage IV SCCHN with T2, (N2 or maybe N3), and M0.

The fun doesn’t end here however. What does this mean? The second website (reference 2) divided stage IV into 2 groups. One group had “relatively” good results and the other had very poor results (to say the least). They were divided based on the above T, N, and M ratings. Patients with the new favorable stage IV have a 5-year survival rate of 30%, and those with the new unfavorable stage IV had a survival rate of 0%.

I fall on the borderline side of a favorable stage IV. I think that’s why my treatment has been so aggressive and my recurrences have been so frequent. In 2 years I’ll reach the 5 year mark. That’s a long way off when you’re living a day at a time. But 3 out of 10 people are still here then and I hope to be one of them.

It would have been interesting for the study to state the percent of cases which were on each side of favorable and unfavorable, but it was not available in the referenced article.

Take care.

References
1. http://www.emedicine.com/plastic/topic376.htm
2. http://linkinghub.elsevier.com/retrieve/pii/S0385814699000048

Between a Rock and a Hard Place

2008-04-08T15:18:00.001-05:00

I love proverbs. There are websites out there with 100s of them. The more popular proverbs have origin, historical context, and date first published. They fit my style. They are usually short of words and long on meaning. We use to play a game with them where we would see who could name the most... back and forth between 2 or more people. When you ran out, you lost the game.

As I write this, yes, I’m between a rock and a hard place. The “rock” is continuing with my chemo regimen; the “hard place” is stopping my chemo. I’ve said this before and I’ll say it again, there are no right and wrong answers.

On one side is a view to continue what’s appears to be working. The issue with this is the toxicity of the chemo. My body may be reaching a critical stage right now where the cumulative affects are once again severely impacting the quality of my life. This includes: 1) Neuropathy which had in the past been annoying (and local to my toes), but is now reaching further up to the middle of my lower leg and is actually causing some significant short intense pain bursts (one to two minutes) in my toes periodically. In most cases, feelings will eventually come back, but not in all cases. 2) Fatigue which has kept me in bed with flu like symptoms for 5 days straight now. I also went on a 5 day antibiotic pack to help avoid pneumonia. Pneumonia is quite common in long term cancer patients. 3) A few other side effects, some mental, some physical, but not worth getting into. And 4) chemo related death. There are no good statistics on this as it’s hard to determine what killed someone, the chemo or the cancer, but one recent article I read said that up to 65 percent of deaths among children with myeloid leukemia follow chemotherapy complications. If you think about it, today’s chemo kills all cells, both good and bad, the purpose of the chemo is to kill the bad cells faster than the good ones.

On the other side of the equation is a view that says stop the chemo. The potential harm is a cancer recurrence. And, to make this choice that much harder, I’m more or less out of options. Sure, if it comes back, my doctors will try something. But, I’m already off the “planned” course and getting lucky twice is unlikely. I’m not overly worried about dying, but the process of dying with this type of cancer creates great anxiety. It will be painful and not be a pretty sight.

Next week I’ll talk to my doctor about some middle ground… a reduction in dosage, less in each sitting, spread them further apart, or some combination of the aforementioned. I don’t have a clue as to the implications for this, but he will understand this and be able to advise me. There is little doubt in my twisted mind that my current state (no evidence of disease) and longevity has pleasantly surprised my medical team.

Back to the proverb. Definition: In difficulty, faced with a choice between two unsatisfactory options. Origin: The earliest known reference was printed in the U.S. in 1921.

I hope you all are well. Take care.

Gaining Hope Cautiously

2008-03-28T08:32:00.000-05:00

Wednesday was a good day at the cancer center. I had seven appointments and they were generally on time. I was there for 8 hours. About half that time was spent with my doctors or their professional assistants. All the news was good. It’s been a little over 5 months since my last operation where my surgeon removed two cancerous tumors from the left side of my face. That makes it officially five months with no evidence of disease (NED). In another week, it will be the longest period or NED since my initial diagnosis almost 3 years ago. I actually know all the exact dates, but will spare you those details. I read a book yesterday that said remission begins at 2 years and one is considered cured if they remain in remission at the 5 year point. For me right now, I’ll take it one day at a time.

My biggest worry going into Wednesday was an irritation in the upper back part of my throat. It was in the exact area where surgery was performed to remove cancer cells/tissue from my soft pallet two years ago. I was hoping the irritation was caused by my new mouth device and not by something more sinister… like a cancer recurrence. Once people have cancer, worrying about recurrence is commonplace. Once people have a recurrence, they worry even more. It’s a vicious cycle. Having had 4 recurrences in the past 2.5 years gives me rational reason to be worried. It’s a longer story, but I’ll cut to the chase. I showed my dental oncologist the spot of irritation. He’s the one who designed my month device. He said he could see it right away and strongly believed it was the device that was causing the irritation. He took the device and refined it a bit. I slipped it back in my month and almost immediately all the friction irritation was gone. Just like magic. The spot itself is still sore, but I’m now thinking it is not sometime sinister and it will heal over the next week or two. It was a huge relief and I’ll sleep better because of this knowledge. Once again my thanks go out to all of those at my cancer center who saw me on Wednesday and all those other professionals who have helped me over the past few years.

I hope you all are well. Take care.

Rocky Road

2008-03-25T17:34:00.000-05:00

In the land and time before cancer (BC), I was heading up a major software implementation team for a very well known nationwide retail store in NYC. Shortly before we went live, we threw a small party for the project team. This included people from my company and our clients. Among other things, we served Rocky Road ice creme. It was a symbolic gesture to say we all worked hard, it hadn’t always been easy (as in it has been a rocky road), but we were almost there. It’s easy for me to compare my cancer to a rocky road. I felt pretty good for about 4 weeks, then not well for 3 days (I’ll spare you all the details) beginning last Thursday night. I’m feeling better today. That’s one of the frustrating parts of my situation. I can’t seem to put a cycle on when I’ll feel well and when I won’t. I can get through the illnesses and discomfort, but it makes it so hard to make commitments and to plan anything that requires a specific time period. So, I adjust, reduce my commitments and move on.

I have a full day at the cancer center tomorrow with seven appointments including a chemo infusion. Given the news on my health lately, which has been generally positive, I look forward to what I hope will be continued confirmation as to my well being. I expect that this will be a normal day for me.

I continue to read about Leroy Sievers (lung cancer) on the NPR website and Randy Pausch (pancreatic cancer, former CMU professor) on his website. Leroy has had a really tough 6 months, but he keeps on fighting. For anyone who wants to understand the mindset of a cancer victim, Leroy’s site is A+. Randy has a book being published in April. He received a $7 million advance payment for his book. He has had some recent setbacks and over the past month is beginning to experience the real pain cancer causes. There’s no doubt in my mind he would happily trade his book advance for good health. That's one of the things cancer does for you. It helps you understand what's important.

Thanks for checking in. Take care.

Normal Day

2008-03-16T14:17:00.000-05:00

Hi. My cancer blog has focused on my cancer. This may seem like an odd statement for those of you living outside of cancer world. In reading other people’s cancer blogs, they focus on friends, family, trips, current activities, their cancer, feelings, and their cancer treatments. Being a private person, I rarely talk about anything other than life aspects directly connected to my disease.

This blog entry is not breaking with that tradition. But, yesterday was exciting to me, I had an almost normal day. I went to the beach near my house, got mildly sunburned on my legs (87 degrees and sunny out), I took a silly 2 hour bus tour of a historic city (although silly, it was educational and entertaining), and had lobster bisque soup at a boardwalk restaurant next to a water channel overlooking a bay with lots of small yachts and sail boats coming and going. My eating wasn’t pretty. A few napkins were required, but so what. Although the restaurant was a bit noisy, my new mouth piece now allows me to speak over the noise without the effort of shouting. This is a major victory. We left the house at 10 AM and got home at 9 PM. Other than trips to the cancer center, I’m sure I haven’t been out of the house for that length of time since my major operation in July 2006. Taking some illness-related paraphernalia with me for the day took a little extra preparation time to get ready for this outing. Overall, it was close to a normal day and I thoroughly enjoyed that part of it almost as much as the day’s activities themselves.

I don’t expect much new news in the near future and as such don’t expect to be writing blog updates as often as in the past. My next chemo is on March 26th. I have 7 different appointments scheduled at the cancer center for that day. That day too will be normal. Not the kind of normal that I like, but normal to me nonetheless.

Thanks for checking in. Take care.

CT Scan Results – Negative for Disease

2008-03-07T19:35:00.000-06:00

I got 2 brief emails today. One from my chemo doctor and the other from his physician assistant. My CT scan from Wednesday night showed no evidence of cancer. Obviously, that’s terrific news. It’s what I was expecting and I‘m pleased. It doesn’t mean I’m cured, but the longer I can hold off the disease, the better my chances are that it will not return. My last operation to remove confirmed cancer cells was in October 2007, 5 months ago. If I can make it 6 – 9 more months with clean scans, I’ll begin feeling much more comfortable. As for the current chemo regimen, it will continue for the time being. That’s the other hurdle, what happens when the chemo stops? I think of it as another situation for my body to be tested somewhere down the road.

Thanks for checking in. Have a great weekend. Take care.

No Pain, No Gain

2008-03-06T13:32:00.000-06:00

I had chemo cycle 9 round 5 yesterday. It was a long day at the cancer center. I left the house at 9:00 AM and got back home at 9:30 PM. I accomplished a lot and therefore feel good about the day. It was busy, but with an incredible amount of waiting. Here’s a summary: 1) blood drawn, 2) oncology clinic visit, 3) speech therapy visit, 4) chemo (waited 4 hours for the orders to get from the oncology unit to the chemo unit - ugh), 5) missed dental oncology visit due to the late chemo timing, 6) supportive care clinic visit (waited, but wasn’t in a big rush), and 7) CT scan with contrast (waited – watched 3 episodes of Scrubs to pass the time away at the end of a long day). It was a full day in the life of a cancer survivor (or victim). I can’t decide which term to use today. It varies by mood.

All of my clinic/therapy visits were terrific. The care and devotion shown by these specialists are awesome. Plus, a friend that I’ve made during this journey who works at the hospital took time out while I was getting my chemo and visited with me. That too was terrific. I got one needle stick and 2 different IVs during the day. They were all successful on the first try. Yahoo. I’m calling the clinical trial to help me with fatigue a success. The supportive care unit is now working with me on a few other symptom management areas.

I hope to have the CT scan results back by Monday. I am expecting them to be clean and will be disappointed if they’re not. I don’t feel any new lumps or bumps. I believe the pain and other symptoms I have are chronic and a result of prior treatments, not cancer. I guess the saying “no pain, no gain” really does apply here. I’ll post the results soon after I get them. This chemo cycle began December 11 2007. At the time, my doctor said it should continue for 6 to 12 months or as long as I could tolerate it. It’s been 3 months and I’m tolerating it okay. As long as the scan results are clean, I suspect I’ll continue the chemo for awhile longer. If they’re not, we’ll have to regroup.

I hope all of you are feeling good and healthy. Thanks for checking in. Take care.

Mid Cycle Update

2008-02-23T09:32:00.000-06:00

My side effects this chemo cycle have been relatively mild. I seem to be able to more-than-less control them through medication. The clinical trial I began a week ago to alleviate fatigue has worked for me. I say this with some hesitation. As mentioned in the prior blog entry, this is a double blind study. As such, I don’t know whether I’m getting a drug or a placebo. But, whichever it is, it’s working. On the 1 to 10 scale where 1 is no fatigue and 10 is the worst fatigue; I was pretty much at a steady 5 on average prior to last week. I must qualify this by saying my scale is different today than before cancer. In today’s world, a 1 means I feel like I can begin doing a light workout. In the world before cancer, I would have rated myself an 8 or 9 on the fatigue scale. Cancer has a way of changing your perspective on many fronts. The new drug I’m taking has lessened my fatigue level to a 2 or 3. That’s a major improvement both physically and mentally. I found an article on the Internet addressing the use of a drug for cancer-related fatigue. Here’s the URL for those that are interested…

http://www.cancerwise.org/april_2004/display.cfm?id=165dd531-c8c3-422c-bdcbde72034d9f8c&method=displayfull&color=green

I asked the clinical trial administrator if I would ever find out whether it is the drug or the placebo that I’m taking. She wasn’t sure, but will try to find out. I’ll let you know the answer if I get one.

The only other news of note is an upcoming CT scan. It’s scheduled for March 5th. The results will be available around March 10th. Given my history, scan results can at best be neutral news (no clear evidence of disease) and at worst bad news. My last scan was in mid November. Here again, I’ll keep you posted.

I finished two more novels by Lee Child. For those interested in action, suspense, puzzles, and clues, this may be a good read. I know I have enjoyed his works.

I hope all of you are feeling good and healthy. Thanks for checking in. Take care.