I'm reading a very good book entitled The Emperor of all Maladies: A Biography of Cancer by Siddhartha Muckerjee. It has an interesting passage about Jana's cancer, chronic myologenous leukemia or CML, that I want to share. The quotation is by Dr. Hagop Kantarjian, an oncologist at the M. D. Anderson Cancer Center.
"Before the year 2000, when we saw patients with chronic myeloid leukemia, we told them that they had a very bad disease, and their course was fatal, their prognosis was poor with a median survival of maybe three to six years, frontline therapy was allogeneic transplant. . .and there was no second-line treatment. . . Today when I see a patient with CML, I tell them that the disease is an indolent leukemia with an excellent prognosis, they will usually live their functional life span provided they take an oral medicine, Gleevec, for the rest of their lives."
The best "cure" in oncology.
David
November 28, 2010
November 22, 2010
The Man with Two Watches
Readers may remember that on September 28th I wrote about a lab test, Mesomark, that measures a peptide (SMRT) produced by mesothelioma cells. The test is not sufficient to diagnose mesothelioma, but, given that I did not have enough tumor to be visible on CT or PET scans, I had hoped that it might be useful in monitoring changes in my tumor load. My Scott & White oncologist reviewed the packet of information about the test that I had given him and decided not to order the test.
He said that he would not use information from the blood test to make a treatment decision about chemotherapy; therefore, there was no reason to give the test. Also, he expected that it to be expensive (perhaps $1,000) and that my insurance would not cover it. I am disappointed, but upon reflection I agree completely with the logic of his decision.
The test is not well enough understood to be useful. As recommendations from the European Society for Medical Oncology state:
Recent data suggest the possible contribution of serum mesothelin-related proteins and osteopontin as useful markers to support the diagnosis of mesothelioma; however, the precise role of these markers is yet to be defined.
Also, medicine is a conservative practice, and doctors monitor their practice against established guidelines. Practice guidelines and consensus recommendations seem to guide practice and are of value to patients because they provide confidence that the treatment they are receiving is consistent with good practice. By sticking to established practices, doctors are probably protected from malpractice suits and are relieved of self-doubts about the correctness of their actions. As my doctor said, he would be anxious about what to do if the imaging and the blood test results seemed to be in conflict. He would have been like the man with two watches who is uncertain about what time it is.
Furthermore, the high and rising costs of medicine focuses everyone’s attention (especially insurance companies) on the medical rationale for tests and procedures. Even if a doctor wanted to depart from an established approach, the prospect of having to debate with an insurance company or one’s own employer might cause second thoughts.
Nevertheless, I was disappointed. I hate throwing away information, throwing away an opportunity to learn. I would not have expected my doctor to make a decision based on the test results, but I was curious about whether something might be learned that would improve treatment decisions in the future. The blood test might actually be a more sensitive measure of disease progression than CT and/or PET scan results, but there is no way to know without further research to clearly establish the link between tumor mass and SMRP levels. Giving the test to one patient would not make a meaningful contribution to that understanding and would only raise questions requiring further study, but it would have been interesting to know the results. The bottom line, however, is that it would not have been interesting enough for me to pay for the tests myself.
David
PS The second round of chemo went more smoothly than the first. I had less intestinal distress (ate multiple small meals and no chili dogs) and took less of my backup anti-vomiting medicine. I think those two factors made things easier.
He said that he would not use information from the blood test to make a treatment decision about chemotherapy; therefore, there was no reason to give the test. Also, he expected that it to be expensive (perhaps $1,000) and that my insurance would not cover it. I am disappointed, but upon reflection I agree completely with the logic of his decision.
The test is not well enough understood to be useful. As recommendations from the European Society for Medical Oncology state:
Recent data suggest the possible contribution of serum mesothelin-related proteins and osteopontin as useful markers to support the diagnosis of mesothelioma; however, the precise role of these markers is yet to be defined.
Also, medicine is a conservative practice, and doctors monitor their practice against established guidelines. Practice guidelines and consensus recommendations seem to guide practice and are of value to patients because they provide confidence that the treatment they are receiving is consistent with good practice. By sticking to established practices, doctors are probably protected from malpractice suits and are relieved of self-doubts about the correctness of their actions. As my doctor said, he would be anxious about what to do if the imaging and the blood test results seemed to be in conflict. He would have been like the man with two watches who is uncertain about what time it is.
Furthermore, the high and rising costs of medicine focuses everyone’s attention (especially insurance companies) on the medical rationale for tests and procedures. Even if a doctor wanted to depart from an established approach, the prospect of having to debate with an insurance company or one’s own employer might cause second thoughts.
Nevertheless, I was disappointed. I hate throwing away information, throwing away an opportunity to learn. I would not have expected my doctor to make a decision based on the test results, but I was curious about whether something might be learned that would improve treatment decisions in the future. The blood test might actually be a more sensitive measure of disease progression than CT and/or PET scan results, but there is no way to know without further research to clearly establish the link between tumor mass and SMRP levels. Giving the test to one patient would not make a meaningful contribution to that understanding and would only raise questions requiring further study, but it would have been interesting to know the results. The bottom line, however, is that it would not have been interesting enough for me to pay for the tests myself.
David
PS The second round of chemo went more smoothly than the first. I had less intestinal distress (ate multiple small meals and no chili dogs) and took less of my backup anti-vomiting medicine. I think those two factors made things easier.
November 12, 2010
The History of the World in 100 Objects
While I've been sitting here in the treatment center receiving bag after bag of IV fluid, I've been listening to some very interesting podcasts from the BBC. The series is called A History of the World in 100 Objects. Neil MacGregor, the director of the British Museum, has selected 100 items from the museum's collection around which to structure a history human civilization. The 15-minute programs were broadcast on 100 days this year and can be downloaded or heard online (http://www.bbc.co.uk/programmes/b00nrtd2). The podcasts I've listened to have been very interesting, and I plan to download the series to listen to while I walk.
If you have an interest in the scope of human history, I suggest taking a listen.
David
If you have an interest in the scope of human history, I suggest taking a listen.
David
November 11, 2010
Second Round of Chemo Tomorrow
Tomorrow, Friday, I have my second round of chemo. Of course that is dependent on my blood counts being adequate, which I assume they will be. I've laid in my supply of food that was appealing during the last round--crackers, canned chicken breast, chicken soup, and American cheese. Yes, American cheese. There's something about the dash of paprika in American cheese that was appealing. Forgot to get Minute Maid lime treats, but we'll get that tomorrow.
I had been concerned that I would be dreading the second round, but that has not happened. I know intellectually that I will not feel good, but I don't have a visceral desire to avoid treatment. I'll see my oncologist and get my blood test results and discuss alternatives to the compazine that gave me blurred vision last time. Then I'll begin the chemo. I'm taking a book, an Economist magazine, and my netbook. I want to try out the popular BBC podcasts about history as told through 100 objects in the British Museum.
As always, thanks for reading the blog.
David
I had been concerned that I would be dreading the second round, but that has not happened. I know intellectually that I will not feel good, but I don't have a visceral desire to avoid treatment. I'll see my oncologist and get my blood test results and discuss alternatives to the compazine that gave me blurred vision last time. Then I'll begin the chemo. I'm taking a book, an Economist magazine, and my netbook. I want to try out the popular BBC podcasts about history as told through 100 objects in the British Museum.
As always, thanks for reading the blog.
David
November 6, 2010
My Father's Cancer Therapy
Going through my first round of chemotherapy has caused me to reflect on my father’s treatment for malignant melanoma and has increased my admiration of the fortitude my parents showed in going through it thirty years ago.
His disease began in a mole on his lower back that he ignored until it began to bleed. With the diagnosis of malignant melanoma, doctors removed a piece of his back about the size of a packet of cigarettes and hoped that the cancer had not spread farther from the site. Unfortunately, disease appeared in a lymph node under one arm, and he went to the M. D. Anderson Cancer Center for surgery that removed the regional lymph nodes and multiple moles on his chest and back. I’m not sure what prompted him to go to Houston for treatment, but I know his doctor, a well-respected Corpus Christi internist, was not particularly supportive.
Information about medical treatments was not widely available at the time, but as a graduate student at the University of Texas, I was able to obtain access to the Texas Medical Association’s medical library where I read all I could on melanoma and its treatment. I was very relieved when I learned that my father’s treatment plan matched the best I had gleaned from the research. He received two kinds of therapy—the chemotherapy drug dacarbazine (DTIC) and immunotherapy using Bacillus Calmette-Guerin (BCG).
DTIC is a highly emetic drug that causes over 90% of patients to become nauseated, and in the mid 70’s medicine’s ability control nausea was very limited. Nausea would begin shortly after the start of the IV and continue throughout the week. My father would return to the motel room where he would sleep and vomit, sleep and vomit. With repeated treatments anticipatory nausea is triggered by the sights and sounds of the treatment room before treatment even begins, and my father developed a deep-seated aversion to the “elevator music” he heard during treatment. His reaction to the music continued long after his treatment ended.
Melanoma cells can be recognized as foreign and be destroyed by the body’s immune system. BCG, a strain of the tuberculosis bacteria that does not cause the disease, is used to stimulate the immune system’s cellular component which is essential in killing the cells. At that time, treatment with BCG involved my mother scratching a tic-tac-toe frame (like the figure below) on my father’s skin with a needle dipped in a suspension of BCG.
The idea was that the BCG would cause a local infection, inflammation would set in, and immune cells would invade the area and kill the BCG. It was hoped that other immune cells would be stimulated to attack his melanoma cells.
The treatments went on for a number of months. The immune response was variable, and if I recall correctly, it diminished as the treatment advanced. I learned from my father that he spent the time between DTIC treatments dreading the trip back to Houston and I judged him to be “on the ragged edge” emotionally. I had seen some research suggesting that stress impacts the immune system, so I wondered if the stress of the DTIC was actually counter-productive. That is, the stress was so great that it interfered with the immune response, and it was the immune response that held the potential for a cure.
I knew my father would not tell his doctor how the treatments were affecting him, so I wrote to his doctor and told him about how my father’s time between treatments was spent in dread of the next treatment and about my concern that the DTIC might be limiting the effectiveness of the immune therapy.
A few days later, my father returned to Houston and passed out at the start of his treatment. The doctor cancelled the treatment, and he returned home with a tremendous sense of relief. Incidentally, his body’s reaction to the next BCG treatment was the strongest it had ever been, so maybe there was something to the idea that the stress of chemotherapy was limiting the effectiveness of the BCG.
In reflection, I marvel at the stamina of my parents as they worked through the treatments. Would I persist with a treatment as debilitating as my father’s? Would Jana be able to scratch BCG frames in my trunk, arms, and legs? If I were not retired, would I be able to work productively between treatments. I’m two thirds of the way through my first cycle of chemo and feeling good except for a greater sense of fatigue than I expected. My father had to work. With my uncle and another man he ran my uncle’s drive in grocery (think Seven-Eleven). My father worked two rotating six-day workweeks—a 60-hour week followed by a 48-hour week. I could go to work today, if I had to, but I wonder how good I would be, and could I keep it up as many hours as he did? No doubt he was fatigued as well. My sympathy and admiration go out to all those cancer patients who must work and fight the side effects of chemotherapy at the same time.
By the way, the melanoma never returned. The success of the treatment and my father’s positive reports on his experience at M. D. Anderson changed his doctor’s attitude about the hospital so he was more inclined to send patients there for treatment.
David
His disease began in a mole on his lower back that he ignored until it began to bleed. With the diagnosis of malignant melanoma, doctors removed a piece of his back about the size of a packet of cigarettes and hoped that the cancer had not spread farther from the site. Unfortunately, disease appeared in a lymph node under one arm, and he went to the M. D. Anderson Cancer Center for surgery that removed the regional lymph nodes and multiple moles on his chest and back. I’m not sure what prompted him to go to Houston for treatment, but I know his doctor, a well-respected Corpus Christi internist, was not particularly supportive.
Information about medical treatments was not widely available at the time, but as a graduate student at the University of Texas, I was able to obtain access to the Texas Medical Association’s medical library where I read all I could on melanoma and its treatment. I was very relieved when I learned that my father’s treatment plan matched the best I had gleaned from the research. He received two kinds of therapy—the chemotherapy drug dacarbazine (DTIC) and immunotherapy using Bacillus Calmette-Guerin (BCG).
DTIC is a highly emetic drug that causes over 90% of patients to become nauseated, and in the mid 70’s medicine’s ability control nausea was very limited. Nausea would begin shortly after the start of the IV and continue throughout the week. My father would return to the motel room where he would sleep and vomit, sleep and vomit. With repeated treatments anticipatory nausea is triggered by the sights and sounds of the treatment room before treatment even begins, and my father developed a deep-seated aversion to the “elevator music” he heard during treatment. His reaction to the music continued long after his treatment ended.
Melanoma cells can be recognized as foreign and be destroyed by the body’s immune system. BCG, a strain of the tuberculosis bacteria that does not cause the disease, is used to stimulate the immune system’s cellular component which is essential in killing the cells. At that time, treatment with BCG involved my mother scratching a tic-tac-toe frame (like the figure below) on my father’s skin with a needle dipped in a suspension of BCG.
The idea was that the BCG would cause a local infection, inflammation would set in, and immune cells would invade the area and kill the BCG. It was hoped that other immune cells would be stimulated to attack his melanoma cells.
The treatments went on for a number of months. The immune response was variable, and if I recall correctly, it diminished as the treatment advanced. I learned from my father that he spent the time between DTIC treatments dreading the trip back to Houston and I judged him to be “on the ragged edge” emotionally. I had seen some research suggesting that stress impacts the immune system, so I wondered if the stress of the DTIC was actually counter-productive. That is, the stress was so great that it interfered with the immune response, and it was the immune response that held the potential for a cure.
I knew my father would not tell his doctor how the treatments were affecting him, so I wrote to his doctor and told him about how my father’s time between treatments was spent in dread of the next treatment and about my concern that the DTIC might be limiting the effectiveness of the immune therapy.
A few days later, my father returned to Houston and passed out at the start of his treatment. The doctor cancelled the treatment, and he returned home with a tremendous sense of relief. Incidentally, his body’s reaction to the next BCG treatment was the strongest it had ever been, so maybe there was something to the idea that the stress of chemotherapy was limiting the effectiveness of the BCG.
In reflection, I marvel at the stamina of my parents as they worked through the treatments. Would I persist with a treatment as debilitating as my father’s? Would Jana be able to scratch BCG frames in my trunk, arms, and legs? If I were not retired, would I be able to work productively between treatments. I’m two thirds of the way through my first cycle of chemo and feeling good except for a greater sense of fatigue than I expected. My father had to work. With my uncle and another man he ran my uncle’s drive in grocery (think Seven-Eleven). My father worked two rotating six-day workweeks—a 60-hour week followed by a 48-hour week. I could go to work today, if I had to, but I wonder how good I would be, and could I keep it up as many hours as he did? No doubt he was fatigued as well. My sympathy and admiration go out to all those cancer patients who must work and fight the side effects of chemotherapy at the same time.
By the way, the melanoma never returned. The success of the treatment and my father’s positive reports on his experience at M. D. Anderson changed his doctor’s attitude about the hospital so he was more inclined to send patients there for treatment.
David
November 5, 2010
Attention Gold Coast, Queensland, Australia
I have a feature on the blog that allows me to see the location of our readers. I am not surprised to see readers in Japan, Germany, or the UK where I know we have friends who drop by from time to time to check things out; however, I've noticed that someone in Gold Cost, Australia is also dropping in regularly.
I'm curious about how you came to find the blog. Would you send me an email and let me know. No need for names or other personal information, I am just curious.
cancercouple@gmail.com
Thanks for reading.
David
I'm curious about how you came to find the blog. Would you send me an email and let me know. No need for names or other personal information, I am just curious.
cancercouple@gmail.com
Thanks for reading.
David
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