On Thursday, I had an appointment with my oncologist prior to the start of my fifth round of chemotherapy. We reviewed the results of my PET scan (see post from July 5, 2010 ) from the day before, and the results were positive. There has been no spread of my mesothelioma outside of the right half of the thorax, and those nodules showing enhanced sugar usage have remained stable. The current PET was compared with one from June before the removal of the tumors in July, and the absence of those tumors was noted. I also learned that my 6th, 7th, and 8th ribs were broken in the rear during my July surgery in which the 7th rib was removed, and the breaks have healed. I judged it to be a positive report.
I also asked about the growth curve of my tumors. I assumed that the size of the tumors would increase geometrically because each cell division doubles the number of cells. For example, one cell becomes two, then the two cells divide giving four, etc. I assumed that growth would be rapid near the end of life, but the doctor said that was not a characteristic of this disease. The growth rate is more linear. That was reassuring because I do not want to be caught up short at the end. As the end comes near, things have to be put in order, and explosive growth might be a problem; however, it might mean a longer period of suffering.
I also learned that I will have only six rounds of chemo instead of eight. I don’t’ know where we got the idea that I would have eight rounds, probably from the thoracic surgeon, but I was pleased to know that I will have only to do one more. Then the imaging will be updated to form a baseline that will be repeated every eight weeks.
All in all, I found it to be a positive appointment, and I think I am still in the long tail (see The Median Isn't the Message in the Other Page Section).
David
January 21, 2011
January 12, 2011
Chemo: Round 4
I began my fourth of a possible eight round of chemo therapy on December 30. It has become somewhat routine now in terms of my knowing what to expect at different points in the cycle; however, this round involved a new wrinkle—monitoring my blood sugar levels. In the weeks prior to this round, I discovered that my blood sugar levels were high. Several years ago, I was borderline for diabetes, so my doctor started me on metformin, and I began to watch my diet, lose weight, and exercise regularly which allowed me to reduce my blood sugar to acceptable levels and get off of the metformin. Since I’ve developed cancer and had the various surgical procedures and chemotherapy, I have stopped exercising and my weight has crept up somewhat, and my blood sugar levels are higher than they were before I started taking metformin.
I talked to my doctor about my blood sugar levels before beginning round 4. He said the steroids were likely the cause of the high glucose levels and at first suggested not taking them this round. Then after some discussion, the decision was to continue with the steroids but to monitor my blood sugar. The normal routine with the steroids is to have two pills at the time of the chemo infusion, then to take two in the morning and two in the evening for two days then one in the morning and one in the evening for two and a half days.
When my blood sugar level hit 436 at 10 pm on the first day after chemo and was at 374 the next morning, I took two steroids and began looking at other options. Given that it was the New Years weekend, I did not try to contact my doctor or the oncologist on call but did some reading on the internet. I knew from previous reading that Benadryl has anti-vomiting properties, and I had heard it being given by IV to a nearby woman in the infusion room, so I begin looking at the recommended dosage for nausea and if there were any drug interactions between Benadryl and the other drugs I was taking.
From what I could find, it looked like Benadryl is a very safe and very useful drug, so I decided to take it in place of the steroids and hope that my nausea would be controlled. I would taper off the dose just as the steroids were tapered off, and stop the Benadryl on the same schedule as the steroids. It worked. The doctor had said that he was concerned about blood sugar reading above 300, and by the day after stopping the steroids my levels stayed below 300. My levels are still too high, so I will have to talk with the doctor about where to go from here, but I was pleased that I was able to get below 300 without nausea.
Fatigue was a bigger problem than usual this time. Usually on about the fourth day after the infusion, I hit a wall of fatigue that lasts for four or five days. This time, it seemed worse than before, and I did little those days; however, by a week or so after the infusion, I was sufficiently energetic to work most of the day in the yard raking, mulching, and bagging leaves. From what I can tell, the cause of fatigue associated with cancer treatment is not well understood. I had some fatigue when undergoing radiation treatment for prostate cancer. I hypothesized that dying cells gave off compounds that told the body that it was injured and to take shelter and lie low. If so, then it seems that my chemotherapy must be killing more cells than my radiation did because this fatigue is much greater than what I had before.
David
I talked to my doctor about my blood sugar levels before beginning round 4. He said the steroids were likely the cause of the high glucose levels and at first suggested not taking them this round. Then after some discussion, the decision was to continue with the steroids but to monitor my blood sugar. The normal routine with the steroids is to have two pills at the time of the chemo infusion, then to take two in the morning and two in the evening for two days then one in the morning and one in the evening for two and a half days.
When my blood sugar level hit 436 at 10 pm on the first day after chemo and was at 374 the next morning, I took two steroids and began looking at other options. Given that it was the New Years weekend, I did not try to contact my doctor or the oncologist on call but did some reading on the internet. I knew from previous reading that Benadryl has anti-vomiting properties, and I had heard it being given by IV to a nearby woman in the infusion room, so I begin looking at the recommended dosage for nausea and if there were any drug interactions between Benadryl and the other drugs I was taking.
From what I could find, it looked like Benadryl is a very safe and very useful drug, so I decided to take it in place of the steroids and hope that my nausea would be controlled. I would taper off the dose just as the steroids were tapered off, and stop the Benadryl on the same schedule as the steroids. It worked. The doctor had said that he was concerned about blood sugar reading above 300, and by the day after stopping the steroids my levels stayed below 300. My levels are still too high, so I will have to talk with the doctor about where to go from here, but I was pleased that I was able to get below 300 without nausea.
Fatigue was a bigger problem than usual this time. Usually on about the fourth day after the infusion, I hit a wall of fatigue that lasts for four or five days. This time, it seemed worse than before, and I did little those days; however, by a week or so after the infusion, I was sufficiently energetic to work most of the day in the yard raking, mulching, and bagging leaves. From what I can tell, the cause of fatigue associated with cancer treatment is not well understood. I had some fatigue when undergoing radiation treatment for prostate cancer. I hypothesized that dying cells gave off compounds that told the body that it was injured and to take shelter and lie low. If so, then it seems that my chemotherapy must be killing more cells than my radiation did because this fatigue is much greater than what I had before.
David
December 8, 2010
Posting Hiatus
Our cancer news has become pretty routine, so I do not expect to add any posts until after the New Year. I’ll put an announcement of Facebook when I add the next post. Thanks to all who stop by to check in, and best wishes for a great holiday season and a happy and productive New Year.
David
David
December 7, 2010
A Good Source of Oncology News
Take a look at the top listing in the sidebar to the right. I added a section with links to oncology information. The first site, OncologySTAT, provide lots of information including free access to journal articles. If you're serious about learning about cancer, I recommend taking a look.
David
David
Low-Dose Asprin May Lower Cancer Rates
Check out this article from the New York Times: http://www.nytimes.com/2010/12/07/us/07aspirin.html?hpw. It looks like all adults ought to discuss starting a low-dose aspirin regimen with their doctor at their next checkup.
David
David
December 3, 2010
CT and Blood Test Results, Chemo Round 3
I completed my third round of chemo about two hours ago, and all went well. I feel good. I just wish I'd feel as good on Monday through Wednesday.
We saw my oncologist before chemo, and he reported that my blood counts, liver tests, and kidney function were all good. He also had results from a comparison of my recent CT results with the scans from September and from before my surgery. There was no noticeable change in the right thorax and no evidence of metastasis outside of it. Given that they could not see any clear tumor mass the last time, I take the findings as an indication that my disease is at least stable. The results strengthened the cancer patient's chief bulwark against despair--the hope that treatment will at least provide a meaningful extension of life.
Another few thoughts on the topics raised in yesterday's post on the "Why Us" question. I did not mean to imply in that post that the decisions we make do not have an impact on our lives, only that some events like an automobile accident, winning the lottery, or getting cancer are essentially independent of our actions. They are not part of some grand narrative. My understanding of how our actions affect the world and ourselves is consistent with the Asian concept of karma. My interpretation of karma is as follows:
1. The world in an extremely complex and interconnected entity.
2. Our interactions with the world, our decisions and the actions that we take, affect the decisions and actions of others, and those actions and decisions affect even others, etc.
3. We are impacted by the decisions and actions of others and those influences are at least partly shaped by our previous decisions and actions. Our decisions find their way back to us through the actions of others.
4. On the average, good or right decisions return good or right results. Bad or wrong decisions tend to bring bad or wrong results.
Think of a pond filled with many vibrating posts where each post represents an individual. The wave-like rings that flow out from my post strike and are reflected from other posts near me and interact with the waves produced by the vibrations of other posts. The resulting waves return to me. While the interaction of the waves and the posts is extremely complex, perhaps complex enough to preclude prediction, causality is still involved, and on the average, right action produces positive results and wrong action produces negative results. One person making right decisions in a field (families, communities, and nations) where most are making wrong decisions will not benefit the one making right decisions much, but as fields are transformed from being composed predominantly of persons making wrong decisions to fields filled predominantly with persons making good decisions, the quality of life improves. The difficult questions are how to identify good or right actions and how to promote right action.
David
We saw my oncologist before chemo, and he reported that my blood counts, liver tests, and kidney function were all good. He also had results from a comparison of my recent CT results with the scans from September and from before my surgery. There was no noticeable change in the right thorax and no evidence of metastasis outside of it. Given that they could not see any clear tumor mass the last time, I take the findings as an indication that my disease is at least stable. The results strengthened the cancer patient's chief bulwark against despair--the hope that treatment will at least provide a meaningful extension of life.
Another few thoughts on the topics raised in yesterday's post on the "Why Us" question. I did not mean to imply in that post that the decisions we make do not have an impact on our lives, only that some events like an automobile accident, winning the lottery, or getting cancer are essentially independent of our actions. They are not part of some grand narrative. My understanding of how our actions affect the world and ourselves is consistent with the Asian concept of karma. My interpretation of karma is as follows:
1. The world in an extremely complex and interconnected entity.
2. Our interactions with the world, our decisions and the actions that we take, affect the decisions and actions of others, and those actions and decisions affect even others, etc.
3. We are impacted by the decisions and actions of others and those influences are at least partly shaped by our previous decisions and actions. Our decisions find their way back to us through the actions of others.
4. On the average, good or right decisions return good or right results. Bad or wrong decisions tend to bring bad or wrong results.
Think of a pond filled with many vibrating posts where each post represents an individual. The wave-like rings that flow out from my post strike and are reflected from other posts near me and interact with the waves produced by the vibrations of other posts. The resulting waves return to me. While the interaction of the waves and the posts is extremely complex, perhaps complex enough to preclude prediction, causality is still involved, and on the average, right action produces positive results and wrong action produces negative results. One person making right decisions in a field (families, communities, and nations) where most are making wrong decisions will not benefit the one making right decisions much, but as fields are transformed from being composed predominantly of persons making wrong decisions to fields filled predominantly with persons making good decisions, the quality of life improves. The difficult questions are how to identify good or right actions and how to promote right action.
David
December 2, 2010
Why Us?
The other day, Cancer Couple received a comment from a mother of two young children in Australia who suffers from a difficult-to-classify brain tumor and whose husband is doing well after an autologous stem cell transplant for AML/APL leukemia. You see her beautifully written blog at http://coogeegoo.wordpress.com/.
In closing, she asked, “How do you deal with the "why us?" response that has no answer?” It is a question that I have given some thought to, so I want to share a few ideas.
Many behavioral scholars believe that humans have a built in sense of morality based on cooperation through reciprocity and punishment. It is in our nature to cooperate with others as long as there is reciprocity. I’ll help you, if you help me. However, because people sometimes cheat and do not reciprocate, we are naturally predisposed to punish violators. We have a well-developed sense of fairness that causes us to look for unfair behavior and seek punishment as a way of restoring fairness. An interesting article on the inborn morality of infants can be found here: http://www.nytimes.com/2010/05/09/magazine/09babies-t.html?_r=1&scp=1&sq=infant%20morality&st=cse
I believe our fairness detector is activated when bad events occur in our lives, and we look for reasons for those events. We want to find the meaning of the events so we can determine if someone has cheated so they can be punished. I remember my mother saying, “It’s not fair” with reference to my father’s development of malignant melanoma. He was a good man who worked hard to support his family and was always honest and fair in his dealings with others. My mother thought it was unfair that such a man should have cancer when others who in her view were not so good did not. She was searching for equity in a context in which fairness/unfairness, right/wrong did not apply. Some events have no meaning. The world is an incredibly complex place, and things we see as both good and bad happen essentially at random. That is, they are not part of some overarching, goal directed process. There may be causes for the event, but they are essentially random at the core, like winning the lottery.
I know Jana and I asked the question, “Why us?” but it is a question without an answer. It is as if a meteor had crashed through our roof and struck us down. We know what happened. We can understand the injuries caused by the mass of a meteor crushing our bodies, but to ask why the meteor hit our house instead of someone else’s is a waste of time even though asking the question is a normal response to the situation.
It is reasonable to look for the mechanistic causes of cancer, but the more we understand the biology of cancer, the more it appears that while some actions can reduce our chances of developing cancer, the initiation of any given case of cancer has a random component. A person may choose to smoke and knowingly increase his or her chances of developing lung cancer, but the actual development of the cancer lies in the interaction between the carcinogens in the smoke and the individual’s genetic makeup and lifetime exposure to cancer promoting life events. My father and his nine siblings grew up on a farm and spent a lot of time working in the fields under an intense sun, but he was the only one to develop melanoma. The development of cancer is entirely deterministic but of such a complexity that the absolute prediction of who will and who will not develop the disease is impossible to know at this time.
So that is my answer, Coogeegoo. It is natural to ask the question, “Why us?” but as you noted it has no answer. Please keep writing on your blog. You have at least one person who is not a friend or relative who is interested in monitoring your progress against this challenge that you and your family have been given at such a young age.
David
In closing, she asked, “How do you deal with the "why us?" response that has no answer?” It is a question that I have given some thought to, so I want to share a few ideas.
Many behavioral scholars believe that humans have a built in sense of morality based on cooperation through reciprocity and punishment. It is in our nature to cooperate with others as long as there is reciprocity. I’ll help you, if you help me. However, because people sometimes cheat and do not reciprocate, we are naturally predisposed to punish violators. We have a well-developed sense of fairness that causes us to look for unfair behavior and seek punishment as a way of restoring fairness. An interesting article on the inborn morality of infants can be found here: http://www.nytimes.com/2010/05/09/magazine/09babies-t.html?_r=1&scp=1&sq=infant%20morality&st=cse
I believe our fairness detector is activated when bad events occur in our lives, and we look for reasons for those events. We want to find the meaning of the events so we can determine if someone has cheated so they can be punished. I remember my mother saying, “It’s not fair” with reference to my father’s development of malignant melanoma. He was a good man who worked hard to support his family and was always honest and fair in his dealings with others. My mother thought it was unfair that such a man should have cancer when others who in her view were not so good did not. She was searching for equity in a context in which fairness/unfairness, right/wrong did not apply. Some events have no meaning. The world is an incredibly complex place, and things we see as both good and bad happen essentially at random. That is, they are not part of some overarching, goal directed process. There may be causes for the event, but they are essentially random at the core, like winning the lottery.
I know Jana and I asked the question, “Why us?” but it is a question without an answer. It is as if a meteor had crashed through our roof and struck us down. We know what happened. We can understand the injuries caused by the mass of a meteor crushing our bodies, but to ask why the meteor hit our house instead of someone else’s is a waste of time even though asking the question is a normal response to the situation.
It is reasonable to look for the mechanistic causes of cancer, but the more we understand the biology of cancer, the more it appears that while some actions can reduce our chances of developing cancer, the initiation of any given case of cancer has a random component. A person may choose to smoke and knowingly increase his or her chances of developing lung cancer, but the actual development of the cancer lies in the interaction between the carcinogens in the smoke and the individual’s genetic makeup and lifetime exposure to cancer promoting life events. My father and his nine siblings grew up on a farm and spent a lot of time working in the fields under an intense sun, but he was the only one to develop melanoma. The development of cancer is entirely deterministic but of such a complexity that the absolute prediction of who will and who will not develop the disease is impossible to know at this time.
So that is my answer, Coogeegoo. It is natural to ask the question, “Why us?” but as you noted it has no answer. Please keep writing on your blog. You have at least one person who is not a friend or relative who is interested in monitoring your progress against this challenge that you and your family have been given at such a young age.
David
November 28, 2010
A Word about CML
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
"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 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
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