Modified Barium Swallow Test

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

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

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

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

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

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

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.