Isn't it interesting that I had treatments for nearly one year to deal with the large tumor in my right lung, but there was only "fact based evidence" for the initial treatments I received? After completing chemo-radiation in December of 2007 -- two months after my tumor was discovered -- there was nothing more conventional science could do for me. Dr. Steve liked to say "we are in uncharted waters" when it came to doing anything further. No one knows what modality of treatment has worked for me -- the adjuvant chemo and radiation first line treatment I initially received, the 16 weeks of consolidation chemo of cisplatin and navelbine, the whole brain radiation, or the clinical trial drug I am now taking. No one can predict if I will stay healthy or relapse. When it comes right down to it, there is not much we know about why I have done so well. Maybe it is something in my genes? (If that is the case, I should bottle it and sell it!)
I find that amazing that after decades of "the war on cancer" we are virtually no futher along in treating the number one cancer killer -- lung cancer -- than we were in 1971. Can you imagine if computer technology had not progressed since 1971? There would be no such thing as a personal computer or wireless phones or texting or the internet.
Why are we able to make great strides when it comes to the futuristic technology we employ in our daily lives today (GPS navigation, digital voice recognition, satellite TV, mobile phones, etc) but can't seem to get to first base when it comes to the biology of cancer? Could it be that in our quest for safety and the regulatory environment has created gigantic speed bumps making the cost of new technology prohibitive?
Imagine how slow cell phone technology would have developed if the FDA required that we test the phones to see if prolonged use will result in brain tumors. I dare say we would not have seen cell technology develop at the spectacular speed it did. We would all be walking around with eight pound clunkers. Nor would we have the lung cancer epidemic we have today if the FDA had regulated tobacco companies. How much testing did we do before cigarettes were allowed on the market?
In April of this year I attended a conference put on by the National Lung Cancer Alliance called the National Lung Cancer Advocate Summit in Dallas Texas. The conference was intended for people like me who want to do something about the lack of awareness and funding for lung cancer. Researchers from the University of Texas provided us with a one day course to explain what known about the biology of cancer and what is yet to be learned. Suffice it to say that, while we know a lot about the complexities of the various forms of cancer, there is much more that we don't know.
Sunday, August 30, 2009
Saturday, August 29, 2009
Brain Radiation and Entering a Drug Trial
On our return from our lobbying effort in Washington DC last July, Yoko and I decided to forge ahead with our life together and try to do things we might not have the chance to do later on. We began making travel plans to Europe, something we might never get to do if my health deteriorates. We planned the trip of a lifetime -- three weeks in Italy for early October, 2008.
If I have a recurrence of cancer, it is more likely to show up as metastasis to the brain or bones. In the first phase of my treatment, we were dealing directly with the lung tumor to shrink it and kill any metabolic activity. That seemed to have worked. In the second phase of my treatment we were trying to deal with the cancer systemically -- that is, to kill any cancer cells that could be floating around in my body and showing up as metastatic cancer, say to the liver or kidney. The problem, however, is that chemo does not work so well in the brain. Lung cancer patients will frequently develop secondary brain tumors, despite having been treated with chemo. This tendency for chemo not to help with brain tumors is said to be the result of “the blood-brain barrier”. Given the size of my tumor at diagnosis, I felt I was at risk to develop brain tumors. I am more afraid of being disabled by brain tumors than of dying.
I spoke with Dr Steve as well as my radiology oncologist about the idea of doing whole brain radiation as a preventative. I also did research on the internet and called on online support groups to give me advice. The bottom line was that there is no research to suggest that it helps and there is no research to suggest that it does much long term harm. Nevertheless there are dangers to radiating the brain, such as seizure from brain swelling due to the radiation, potential memory loss, etc. The other risk is that, if down the road I did develop mets to the brain, whole brain radiation as a treatment would be off the table as the brain (or any organ for that matter) can only take so much radiation.
After a lot of handwringing I decided to go ahead with brain radiation. We determined to do 15 treatments -- roughly half the radiation I had in the lung. Given the lack of hard evidence either way, my thinking about this was simple. If I don't do it and I develop brain mets, I will have wished I had. If I develop brain mets anyway, what did I lose? I decided that I would rather go down fighting than regret not having done everything possible.
I also decided to enter into a clinical trial --a double blind study -- for a drug called Stimuvax. This is one of the only drug trials for lung cancer currently underway. If I got into the trial, I had a two-thirds chance of getting the actual drug, rather than a placebo. The problem was that I had to "qualify" for the trial, which required that I be a Stage III non-small cell lung cancer patient who is "stable" and begin the trial within 12 weeks of completing chemo. In order to enter the drug trial within 12 weeks of finishing chemo, I had to start the receiving the drug by the end of August. That meant I had to squeeze two weeks of brain radiation in the last two weeks of July. Our trip to Italy was planned for October.
If I have a recurrence of cancer, it is more likely to show up as metastasis to the brain or bones. In the first phase of my treatment, we were dealing directly with the lung tumor to shrink it and kill any metabolic activity. That seemed to have worked. In the second phase of my treatment we were trying to deal with the cancer systemically -- that is, to kill any cancer cells that could be floating around in my body and showing up as metastatic cancer, say to the liver or kidney. The problem, however, is that chemo does not work so well in the brain. Lung cancer patients will frequently develop secondary brain tumors, despite having been treated with chemo. This tendency for chemo not to help with brain tumors is said to be the result of “the blood-brain barrier”. Given the size of my tumor at diagnosis, I felt I was at risk to develop brain tumors. I am more afraid of being disabled by brain tumors than of dying.
I spoke with Dr Steve as well as my radiology oncologist about the idea of doing whole brain radiation as a preventative. I also did research on the internet and called on online support groups to give me advice. The bottom line was that there is no research to suggest that it helps and there is no research to suggest that it does much long term harm. Nevertheless there are dangers to radiating the brain, such as seizure from brain swelling due to the radiation, potential memory loss, etc. The other risk is that, if down the road I did develop mets to the brain, whole brain radiation as a treatment would be off the table as the brain (or any organ for that matter) can only take so much radiation.
After a lot of handwringing I decided to go ahead with brain radiation. We determined to do 15 treatments -- roughly half the radiation I had in the lung. Given the lack of hard evidence either way, my thinking about this was simple. If I don't do it and I develop brain mets, I will have wished I had. If I develop brain mets anyway, what did I lose? I decided that I would rather go down fighting than regret not having done everything possible.
I also decided to enter into a clinical trial --a double blind study -- for a drug called Stimuvax. This is one of the only drug trials for lung cancer currently underway. If I got into the trial, I had a two-thirds chance of getting the actual drug, rather than a placebo. The problem was that I had to "qualify" for the trial, which required that I be a Stage III non-small cell lung cancer patient who is "stable" and begin the trial within 12 weeks of completing chemo. In order to enter the drug trial within 12 weeks of finishing chemo, I had to start the receiving the drug by the end of August. That meant I had to squeeze two weeks of brain radiation in the last two weeks of July. Our trip to Italy was planned for October.
Fast Forward -- Transition to Realtime
When I began converting my blog into a weekly newspaper column, I was concerned about what my health would be like a year hence. That was in September of 2008. As a result, my articles in the Sun to date have been published on what was, in effect, a one year time delay. I have now published 52 articles in "Living with Cancer".
I would like to continue my story by bringing you up to date. Today begins the second year of my column and because my health is currently excellent I am going to start writing in "real time" rather than on a time delay. I completed my consolidation chemo on May 30, 2008. The following week I flew to California and on June 7th accomplished my first goal after being diagnosed, which was to live long enough to give my oldest daughter away at her wedding. Nearly everyone that Paula and Brian invited came to the wedding, which was held at Shutters on the Beach in Santa Monica. We had 158 guests who celebrated not only the wedding, but my living long enough to be there.
After the wedding we went with some of our good friends to Las Palmas at Rancho Mirage, near Palm Springs. We spent a few days relaxing, playing golf and celebrating life. It was truly a wonderful time that I will never forget.
After the wedding Yoko and I traveled from Florida by auto train to Washington DC to lobby Senators Nelson and Martinez. Our visit was arranged by a lung cancer advocate and patient support group, Lung Cancer Alliance, which had been pushing legislation called "The Lung Cancer Mortality Reduction Act." The proposed legislation directs the National Institute of Health and other federal agencies to make lung cancer research a national research priority. The goal of the legislation is to reduce lung cancer mortality by 50%.
Lung cancer survival rates (defined as living five years from date of diagnosis) is a depressingly low 15% overall. For Stage III and IV l lung cancer patients, survival rates are even worse -- only 5%. Lung cancer survival rates have hardly changed in 40 years. In comparison, breast cancer survival rates are over 89% and prostate cancer survival rates are 99%. In the case of breast, colon, and prostate cancer, there are screening protocols for finding the cancer early. There are no screening protocols for lung cancer. Yoko and I felt that more had to be done.
More people will die of lung cancer (30% of ALL cancer deaths) than breast, prostate, liver, kidney and colon cancers COMBINED. Twice as many women will die from lung cancer than from breast cancer; three times more men will die from lung cancer than prostate cancer, yet lung cancer gets the least amount of funding of all the major cancers -- $1414 per death compared to $23,754 per death from breast cancer, which gets the most funding. It's unbelievable and makes no sense to me whatsoever.
We met with the legislative aides to the Senators, not the Senators themselves. They were sympathetic to our cause and had no idea that there were such large discrepancies in federal funding. But it was clear to me that they would resist legislating “body part specific research.” And politically no one wants to come near my idea of having a portion of the federal excise tax on tobacco (over $8 billion annually) be used for lung cancer research. That would make way too much sense.
I would like to continue my story by bringing you up to date. Today begins the second year of my column and because my health is currently excellent I am going to start writing in "real time" rather than on a time delay. I completed my consolidation chemo on May 30, 2008. The following week I flew to California and on June 7th accomplished my first goal after being diagnosed, which was to live long enough to give my oldest daughter away at her wedding. Nearly everyone that Paula and Brian invited came to the wedding, which was held at Shutters on the Beach in Santa Monica. We had 158 guests who celebrated not only the wedding, but my living long enough to be there.
After the wedding we went with some of our good friends to Las Palmas at Rancho Mirage, near Palm Springs. We spent a few days relaxing, playing golf and celebrating life. It was truly a wonderful time that I will never forget.
After the wedding Yoko and I traveled from Florida by auto train to Washington DC to lobby Senators Nelson and Martinez. Our visit was arranged by a lung cancer advocate and patient support group, Lung Cancer Alliance, which had been pushing legislation called "The Lung Cancer Mortality Reduction Act." The proposed legislation directs the National Institute of Health and other federal agencies to make lung cancer research a national research priority. The goal of the legislation is to reduce lung cancer mortality by 50%.
Lung cancer survival rates (defined as living five years from date of diagnosis) is a depressingly low 15% overall. For Stage III and IV l lung cancer patients, survival rates are even worse -- only 5%. Lung cancer survival rates have hardly changed in 40 years. In comparison, breast cancer survival rates are over 89% and prostate cancer survival rates are 99%. In the case of breast, colon, and prostate cancer, there are screening protocols for finding the cancer early. There are no screening protocols for lung cancer. Yoko and I felt that more had to be done.
More people will die of lung cancer (30% of ALL cancer deaths) than breast, prostate, liver, kidney and colon cancers COMBINED. Twice as many women will die from lung cancer than from breast cancer; three times more men will die from lung cancer than prostate cancer, yet lung cancer gets the least amount of funding of all the major cancers -- $1414 per death compared to $23,754 per death from breast cancer, which gets the most funding. It's unbelievable and makes no sense to me whatsoever.
We met with the legislative aides to the Senators, not the Senators themselves. They were sympathetic to our cause and had no idea that there were such large discrepancies in federal funding. But it was clear to me that they would resist legislating “body part specific research.” And politically no one wants to come near my idea of having a portion of the federal excise tax on tobacco (over $8 billion annually) be used for lung cancer research. That would make way too much sense.
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