Wednesday, April 30, 2008

How People Feel About Cancer

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

Tuesday, April 29, 2008

My Cancer...

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

Wednesday, April 23, 2008

Another Day, Another Infusion

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.

Thursday, April 17, 2008

The Truth About Cancer (PBS) - My Thoughts

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…

Take care everyone.

Wednesday, April 16, 2008

My Day at the Cancer Center

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.

Tuesday, April 15, 2008

Miracle Cure or Hype?

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.


Saturday, April 12, 2008

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

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.

Friday, April 11, 2008

Prognosis Statistics

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.


Tuesday, April 8, 2008

Between a Rock and a Hard Place

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.