December 13 2010 – My Cancerversary

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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