On Wednesday the 14th I had the first round of my second course of chemo. So far, it has been much easier to tolerate than the first course. The steroid I take at the beginning of the round wound me up a little, so I had trouble sleeping the night before the treatment, but a Benadryl the next two nights helped me get to sleep without a problem. The steroid also caused a spike in my blood sugar, but I think that should drop now that I’m through taking it this round. No nausea, no particular loss of appetite, and only minimal feelings of being unwell and fatigued. Interestingly, I felt worse today than any day so far. Maybe the damage done by the drug to cancer and normal cells is now affecting the body.
Bottom Line: If this is as bad as it gets, and the drug does slow down the growth of my tumors, I can keep this up through many rounds. I get the next round on January 4.
David
December 17, 2011
December 7, 2011
Starting Another Round of Chemotherapy
In late October I wrote a post telling about how my tumors appeared to be growing at a more rapid pace and about the difficulty of knowing what to do in response. I had by bimonthly imaging on Friday, a CT scan this time, and saw the oncologists today. The cancer continues to grow more rapidly, so we talked again about possible responses. The bottom line is that we decided to return to chemotherapy because my first round of chemo appeared to have halted the growth while it lasted and for a few months afterwards.
David
Last year at this time, I was receiving a combination of pemetrexed and cisplatin. This time I will be getting pemetrexed alone, and we will monitor to see if it slows down the growth. Apparently, there has never been a trial of pemetrexed alone, but it is used alone as a second line treatment. Pemetrexed was introduced as an agent to kill the cancer cells, but Dr. Camidge said that it is seen now to have the effect of keeping cancer in check rather than killing it. Later, his nurse noted that one patient would be coming in today for her 38th cycle of pemetrexed therapy. At three weeks between treatments, that’s over two years of treatment. I doubt that she is being treated for mesothelioma, and I would be surprised to see mesothelioma turned into a chronic disease by pemetrexed, but it does indicate that the treatment is not so debilitating that it must be stopped even if it is working.
I am very pleased with this plan. It feels good to be taking action, and I am convinced that this is the best approach to slow down the cancer growth with a minimum dent in my quality of life. I also see it as a way of living longer in case a good clinical trial opens or an ongoing trial proves successful against mesothelioma. I’m certainly not looking forward to the treatment, but it will be intellectually interesting to compare my experiences this time with the first round of chemo. Pemetrexed in generally well tolerated and only takes about 10 minutes to infuse. I’ll have to avoid contact with sick people during part of the cycle, but it should create only a minimum amount of fatigue and anorexia.
I’ll post again in probably a couple of week to say how this new round is going.
Thanks again for reading my posts. It’s rewarding to know that some people find them interesting and perhaps helpful.
David
October 23, 2011
Tumor Growth? Exploring Cancer Treatment Options
Last week Jana and I met with my Australian oncologist, Dr. Weickhardt, for the bimonthly review of my latest imaging, a CT scan this time. As I understand it, there are three major foci of cancer in my right thoracic cavity. One is high in the sack that surrounds the heart, the pericardium. From August to October, this tumor shrank 66% from 27 X 51 mm to 15 X 31 mm. That sounds terrific, but it makes me wonder about the measurements, because these tumors are not supposed to shrink. Another area in the fissure between the upper and lower lobes of the lung, remained constant, 10 X 15 mm, while the third area, lower down, near the diaphragm, increased 61% from 18 X 59 mm to 26 X 66 mm.
I don’t’ know exactly what to make of these results. For one thing, the measurements are given in two dimensions. Are they so thin in depth that the depth can be ignored? It also seems strange that one would grow substantially and the other shrink by a similar amount. Of course, the growth of the lower disease area caught our attention because the increase does not seem to be “glacial” as was found two months ago.
I have found over the years that I better understand what I believe after I have written it down. Writing imposes a certain discipline because it requires me to ask myself, “Do you really believe that?” What follows is an attempt to clarify and document my thinking about what action to take. Most readers of this blog may want to stop here, but my thinking is here for any who might be interested.
Background
The initial plan in the summer of 2010 was to have my lung removed along with the lining of the thorax to be followed by radiation therapy in the hopes of obtaining a cure; however, finding mesothelioma in the pericardium blocked that plan, and all accessible tumor was removed. I subsequently received six rounds of chemotherapy. Since that time the tumors appeared to be stable, and frankly, my attitude towards the cancer changed. Before finishing chemo, I did not think I probably had too many more months to live, but the stability of my scans following chemo gave me hope that I might live meaningfully longer than I had expected. Now with the apparently significant growth in one area of disease, I have become more sober about my condition and must review where we go from here.
The findings initiated a discussion of where to go now. It would have been easy to say, “You’re the doctor, what do we do now?” However, I have sufficient knowledge of disease processes, biology, physiology, and the use of data to inform decision making that I want to understand the situation as well as possible in order to participate in the decisions. Consequently, we had a long discussion, and I am very grateful to Dr. Weickhardt for taking the time and having the patience to discuss the options thoroughly.
Four general treatment approaches are available—watch and wait, more chemotherapy, radiation therapy, and participation in a clinical trial. Each approach has its potential benefits and risks, and given the many unknowns in the situation, the decision-making process becomes an interesting intellectual challenge. How do you decide a course of action when the unknowns dominate the decision making? Because mesothelioma is such a rare cancer, the amount of research done is limited as is the understanding of the disease at the molecular level. For example, it is hard to get a critical mass of patients so clinical trials examining variations in treatment options can be tested.
Watching and Waiting
Since the end of my chemotherapy, I have been in a watch and wait phase, and the stability of my disease has been encouraging. I could continue to watch and wait to see what happens with the two major areas of the disease, and decide on a new course of action later; however, in the face of apparently more rapid growth, even if the situation is not completely clear, one feels an urge to take action. While my good quality of life argues for not doing anything until new symptoms develop, changes such as rapid growth in one or more of my lesions, developing other diseases or complications could occur that would preclude other lines of treatment. Do I risk sacrificing my good quality of life for the potential benefit that could come from a new treatment which would most certainly have risks and pain and suffering? If there is no potential for a cure or a significant extension of my life by undergoing a new treatment, is it worth it to do anything but watch and wait?
Chemotherapy
The second option would be more chemotherapy. Unfortunately, as far as I can tell, there is no second-line chemotherapy of proved efficacy. Dr. Weickhardt gave me an excellent review article entitled Current Chemotherapy and Emerging Systemic Strategies for Treatment of Unresectable Malignant Pleural Mesothelioma (Nowak, 2011) from which the following quotations were taken.
Nevertheless, I might be amenable to second-line treatment with pemetrexed if the side effects could be reasonably controlled.
Clinical Trials
Another option would be to take part in a clinical trial, especially a phase II or phase III trial where phase I results have shown that the treatment is relatively nontoxic and shows promise for improvement. Clinical trials are the sources of hope in the fight against cancer, and come in a variety of flavors.
Traditionally, cancer has been fought by the brute force methods of cutting it out, burning it out with radiation, and poisoning it with chemotherapy. The idea is to kill the cancer cells while sparing as much as possible the nonmalignant cells of the body. The cisplatin and pemetrexed I received and most other chemotherapeutic drugs have their affect by interrupting the functioning of rapidly dividing cells. Consequently, such systemic drugs affect healthy rapidly dividing cells as well which contributes to their side effects. Very little progress has been made in identifying new, effective drugs of this type in recent years; however, work continues on developing such drugs and drug combinations.
Another approach is to develop drugs that attack targets that are more specific to cancers than to other rapidly dividing cells. For example, drugs have been developed that attempt to stop angiogenesis, the growth and development of the blood vessels necessary to nourish cancer cells. Attempts have been made to induce the body’s immune system to attack cancer. Cells that have significant DNA damage normally self-destruct through a process called apoptosis, but cancer cells have lost that ability; consequently, attempts have been made to reinstate apoptosis in cancer cells. Again, work of this kind continues.
Another approach comes through using specific characteristics of a type of cancer to target those cells only. A major breakthrough came a few years ago with the development of the drug Gleevec (the drug Jana takes) because the drug targets a specific molecule that causes certain blood cells to reproduce unchecked. Subsequently, tens of drugs have been developed that target specific molecules, but unfortunately, my understanding is that most cancers do not have a single, unique mutation that can be targeted like CML, Jana’s cancer. Most cancers display multiple mutations, and it is unclear which one or number of those mutations are essential driver mutations for the cancer and which are only along for the ride.
If medicine is ever able to tame or eliminate cancer, therapies will be dependent on the understanding of the many genetic mutations that drive cancer cells to replicate relentlessly. As I understand it from Siddhartha Mukherjee’s The Emperor of all Maladies: A Biography of Cancer, scientists think that mutations in one or more of 13 major pathways may underlie all cancers which gives hope that cancer can be controlled much more effectively in the future. Success will depend on basic research into the biology, especially the genetics, of cancer before one or more specific targeted drugs can be developed and administered based on the mutations found in an individual’s tumor or tumors.
Given the small number of cases of mesothelioma and the fact that mesothelioma is characterized by the significant DNA loss, it seems unlikely that mesothelioma specific treatments will be developed any time soon. It seems that any upcoming advances in mesothelioma treatment may depend on the success of treatments that attack the characteristics seen in cancer cells in general. As Nowak wrote,
Unfortunately, there are no clinical trials available to me now, but we will continue to look for them.
Radiation Therapy
The final option would be to undergo radiation therapy, if appropriate. To that end, I had a referral and thorough discussion of radiation therapy with Dr. Laurie Gaspar, a radiation oncologist at the University of Colorado Hospital. Dr. Gaspar explained that there are two common uses (if anything can be called common for a rare disease like mesothelioma) of radiation in mesothelioma. As initially planned for me, radiation can be given to the lining of the thorax following the removal of the lung and tumor burden with the intent to cure the disease. The other use is palliative treatment when the lung is still present in order to reduce pain and perhaps other symptoms as the tumor develops.
I do not fall into either group, so it is doubtful that radiation would be appropriate for me at this time. The problem is that there is no evidence that the radiation of my tumors would be curative; it would most likely only slow down the tumor growth and provide some months of life extension. It would not be curative because a full lethal dose of radiation might not be possible because of the effects of the radiation on nearby tissue, particularly in my case the other lung and the liver.
The radiation treatment is given by beaming the x-rays from several different angles so that the tumors receive a significant dose, but the other tissue does not. When I had prostate cancer, it was relatively easy to plan the treatment because the prostate is a small target in a relatively stable location away from important tissue that might be injured by the radiation. While she doesn’t seem very hopeful, the oncologist has agreed to order a special CT scan and a PET scan to enable her to develop a treatment plan. If the scan shows that it is possible to deliver a meaningful dose to my tumors with a reasonable risk of side effects, they will proceed.
One factor to consider with regards to radiation is what would happen if I got the therapy and then needed palliative treatment later. Could I have both rounds of radiation? I don’t see why not, if I am going to die anyway, but I don’t know the answer. Another factor is that having the radiation might foreclose participation in some clinical trials; however, from what I have read in the descriptions of clinical trials, it might only delay my participation by a month.
What to Do?
So how do I decide what to do. Here are the thoughts that seem most important to me:
Mukherjee, S. The Emperor of all Maladies: A Biography of Cancer. New York: Scribner, 2010.
Nowak, A. K. Current Chemotherapy and Emerging Systemic Strategies for Treatment of Unresectable Malignant Pleural Mesothelioma, American Society of Clinical Oncology, 2011, http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2011/zds00111000309.PDF
I don’t’ know exactly what to make of these results. For one thing, the measurements are given in two dimensions. Are they so thin in depth that the depth can be ignored? It also seems strange that one would grow substantially and the other shrink by a similar amount. Of course, the growth of the lower disease area caught our attention because the increase does not seem to be “glacial” as was found two months ago.
I have found over the years that I better understand what I believe after I have written it down. Writing imposes a certain discipline because it requires me to ask myself, “Do you really believe that?” What follows is an attempt to clarify and document my thinking about what action to take. Most readers of this blog may want to stop here, but my thinking is here for any who might be interested.
Background
The initial plan in the summer of 2010 was to have my lung removed along with the lining of the thorax to be followed by radiation therapy in the hopes of obtaining a cure; however, finding mesothelioma in the pericardium blocked that plan, and all accessible tumor was removed. I subsequently received six rounds of chemotherapy. Since that time the tumors appeared to be stable, and frankly, my attitude towards the cancer changed. Before finishing chemo, I did not think I probably had too many more months to live, but the stability of my scans following chemo gave me hope that I might live meaningfully longer than I had expected. Now with the apparently significant growth in one area of disease, I have become more sober about my condition and must review where we go from here.
The findings initiated a discussion of where to go now. It would have been easy to say, “You’re the doctor, what do we do now?” However, I have sufficient knowledge of disease processes, biology, physiology, and the use of data to inform decision making that I want to understand the situation as well as possible in order to participate in the decisions. Consequently, we had a long discussion, and I am very grateful to Dr. Weickhardt for taking the time and having the patience to discuss the options thoroughly.
Four general treatment approaches are available—watch and wait, more chemotherapy, radiation therapy, and participation in a clinical trial. Each approach has its potential benefits and risks, and given the many unknowns in the situation, the decision-making process becomes an interesting intellectual challenge. How do you decide a course of action when the unknowns dominate the decision making? Because mesothelioma is such a rare cancer, the amount of research done is limited as is the understanding of the disease at the molecular level. For example, it is hard to get a critical mass of patients so clinical trials examining variations in treatment options can be tested.
Watching and Waiting
Since the end of my chemotherapy, I have been in a watch and wait phase, and the stability of my disease has been encouraging. I could continue to watch and wait to see what happens with the two major areas of the disease, and decide on a new course of action later; however, in the face of apparently more rapid growth, even if the situation is not completely clear, one feels an urge to take action. While my good quality of life argues for not doing anything until new symptoms develop, changes such as rapid growth in one or more of my lesions, developing other diseases or complications could occur that would preclude other lines of treatment. Do I risk sacrificing my good quality of life for the potential benefit that could come from a new treatment which would most certainly have risks and pain and suffering? If there is no potential for a cure or a significant extension of my life by undergoing a new treatment, is it worth it to do anything but watch and wait?
Chemotherapy
The second option would be more chemotherapy. Unfortunately, as far as I can tell, there is no second-line chemotherapy of proved efficacy. Dr. Weickhardt gave me an excellent review article entitled Current Chemotherapy and Emerging Systemic Strategies for Treatment of Unresectable Malignant Pleural Mesothelioma (Nowak, 2011) from which the following quotations were taken.
Patients almost invariably progress after initial therapy, and at this point many are fit for second-line treatment. . . [but] as yet there are no randomized studies showing survival benefit from subsequent treatment. (page 310)Perhaps I could have another round of cisplatin and pemetrexed; however, there is no evidence that additional rounds would be beneficial, and I expect more cisplatin might have undesirable toxic effects. Would my lower quality of life be worth a life extension of only a few months? According to Nowak, “Treatment with a second pemetrexed regimen has been proposed, but only low level evidence is available for this approach. . . In the area of first-line pemetrexed, no second-line therapy is supported by enough evidence to consider it standard care.”
Nevertheless, I might be amenable to second-line treatment with pemetrexed if the side effects could be reasonably controlled.
Clinical Trials
Another option would be to take part in a clinical trial, especially a phase II or phase III trial where phase I results have shown that the treatment is relatively nontoxic and shows promise for improvement. Clinical trials are the sources of hope in the fight against cancer, and come in a variety of flavors.
Traditionally, cancer has been fought by the brute force methods of cutting it out, burning it out with radiation, and poisoning it with chemotherapy. The idea is to kill the cancer cells while sparing as much as possible the nonmalignant cells of the body. The cisplatin and pemetrexed I received and most other chemotherapeutic drugs have their affect by interrupting the functioning of rapidly dividing cells. Consequently, such systemic drugs affect healthy rapidly dividing cells as well which contributes to their side effects. Very little progress has been made in identifying new, effective drugs of this type in recent years; however, work continues on developing such drugs and drug combinations.
Another approach is to develop drugs that attack targets that are more specific to cancers than to other rapidly dividing cells. For example, drugs have been developed that attempt to stop angiogenesis, the growth and development of the blood vessels necessary to nourish cancer cells. Attempts have been made to induce the body’s immune system to attack cancer. Cells that have significant DNA damage normally self-destruct through a process called apoptosis, but cancer cells have lost that ability; consequently, attempts have been made to reinstate apoptosis in cancer cells. Again, work of this kind continues.
Another approach comes through using specific characteristics of a type of cancer to target those cells only. A major breakthrough came a few years ago with the development of the drug Gleevec (the drug Jana takes) because the drug targets a specific molecule that causes certain blood cells to reproduce unchecked. Subsequently, tens of drugs have been developed that target specific molecules, but unfortunately, my understanding is that most cancers do not have a single, unique mutation that can be targeted like CML, Jana’s cancer. Most cancers display multiple mutations, and it is unclear which one or number of those mutations are essential driver mutations for the cancer and which are only along for the ride.
If medicine is ever able to tame or eliminate cancer, therapies will be dependent on the understanding of the many genetic mutations that drive cancer cells to replicate relentlessly. As I understand it from Siddhartha Mukherjee’s The Emperor of all Maladies: A Biography of Cancer, scientists think that mutations in one or more of 13 major pathways may underlie all cancers which gives hope that cancer can be controlled much more effectively in the future. Success will depend on basic research into the biology, especially the genetics, of cancer before one or more specific targeted drugs can be developed and administered based on the mutations found in an individual’s tumor or tumors.
Given the small number of cases of mesothelioma and the fact that mesothelioma is characterized by the significant DNA loss, it seems unlikely that mesothelioma specific treatments will be developed any time soon. It seems that any upcoming advances in mesothelioma treatment may depend on the success of treatments that attack the characteristics seen in cancer cells in general. As Nowak wrote,
Mesothelioma is characterized by genomic loss, with loss of tumor suppressor genes rather than the constitutively activating mutations, which have been key to therapeutic advances in other diseases. Loss of regions encoding the tumor suppressor genes p16INK4a, p14ARF, NF2, and TP53 are common. Unfortunately, these losses do not readily translate to therapeutic strategies. However, mesothelioma also demonstrates abnormalities in growth factor receptor pathways, angiogenesis, and apoptosis, which may be amenable to intervention. (page 311)Even though clinical trials are the source of hope for the defeat of cancer, I am not hopeful that a magic bullet will come along in time to provide me with any benefit; however, I look forward to participating in a clinical trial, even at the loss of some quality of life and with the low chance of a curative outcome, because a trial would provide both a modicum of hope and the chance to make a small contribution to understanding the disease.
Unfortunately, there are no clinical trials available to me now, but we will continue to look for them.
Radiation Therapy
The final option would be to undergo radiation therapy, if appropriate. To that end, I had a referral and thorough discussion of radiation therapy with Dr. Laurie Gaspar, a radiation oncologist at the University of Colorado Hospital. Dr. Gaspar explained that there are two common uses (if anything can be called common for a rare disease like mesothelioma) of radiation in mesothelioma. As initially planned for me, radiation can be given to the lining of the thorax following the removal of the lung and tumor burden with the intent to cure the disease. The other use is palliative treatment when the lung is still present in order to reduce pain and perhaps other symptoms as the tumor develops.
I do not fall into either group, so it is doubtful that radiation would be appropriate for me at this time. The problem is that there is no evidence that the radiation of my tumors would be curative; it would most likely only slow down the tumor growth and provide some months of life extension. It would not be curative because a full lethal dose of radiation might not be possible because of the effects of the radiation on nearby tissue, particularly in my case the other lung and the liver.
The radiation treatment is given by beaming the x-rays from several different angles so that the tumors receive a significant dose, but the other tissue does not. When I had prostate cancer, it was relatively easy to plan the treatment because the prostate is a small target in a relatively stable location away from important tissue that might be injured by the radiation. While she doesn’t seem very hopeful, the oncologist has agreed to order a special CT scan and a PET scan to enable her to develop a treatment plan. If the scan shows that it is possible to deliver a meaningful dose to my tumors with a reasonable risk of side effects, they will proceed.
One factor to consider with regards to radiation is what would happen if I got the therapy and then needed palliative treatment later. Could I have both rounds of radiation? I don’t see why not, if I am going to die anyway, but I don’t know the answer. Another factor is that having the radiation might foreclose participation in some clinical trials; however, from what I have read in the descriptions of clinical trials, it might only delay my participation by a month.
What to Do?
So how do I decide what to do. Here are the thoughts that seem most important to me:
- Mesothelioma is fatal, and it appears that my cancer has awakened and is growing again which causes me to want to take some action; however, I have some doubts about the scans because of the apparently significant decrease in one of the tumor sites. How reliable are the conclusions of different radiologists who examine the same images? How thoroughly do they compare scans from one date to another, and why don’t they look at progression across multiple scans rather than just comparing the two most recent?
- Watching and waiting preserves quality of life at the risk of developments that might prevent receiving another treatment later. If my cancer is growing again, what is the risk of waiting to take any action for another six weeks when my next imaging is scheduled?
- There does not seem to be any advantage to chemotherapy. I don’t believe that gaining a couple of months of life extension would be worth the loss in quality of life that chemotherapy would require.
- Clinical trials are currently unavailable, but I am positively disposed to participation if the rational for the treatment seems reasonable, even at the cost of a lower quality of life.
- Radiation is unlikely to be curative, and it would probably lower my quality of life as well as add some risk of damage to lung and/or liver.
Mukherjee, S. The Emperor of all Maladies: A Biography of Cancer. New York: Scribner, 2010.
Nowak, A. K. Current Chemotherapy and Emerging Systemic Strategies for Treatment of Unresectable Malignant Pleural Mesothelioma, American Society of Clinical Oncology, 2011, http://www.asco.org/ASCOv2/Home/Education%20&%20Training/Educational%20Book/PDF%20Files/2011/zds00111000309.PDF
October 10, 2011
Pages on Bullfighting
Last week in response to a post by a cousin, I posted an account of my first bullfight on Facebook. Subsequently, a friend wrote to express her concern about how cruel bullfighting is, what a great waste of time and energy it is, and how painful it is to watch. This got me to thinking about why bullfighting has persisted in this time of animal rights, and I wrote some thoughts on the subject.
Those two pieces are now shown in the column to the right as A Bullfight in Madrid and Reflections on Buillfighting in case anyone is interested.
PS Going to have my bimonthly imaging tomorrow. A CT scan this time.
Those two pieces are now shown in the column to the right as A Bullfight in Madrid and Reflections on Buillfighting in case anyone is interested.
PS Going to have my bimonthly imaging tomorrow. A CT scan this time.
August 3, 2011
First PET Scan in Denver
Today we went in for the results of the scan. If “glacial” growth in the mesothelioma in the pericardium is good, then I had a good report. In fact, the tumor grew by only about a millimeter which was within the measurement error of the scans. That is, they couldn’t say with certainty that the tumor had grown from May to August. To me that was good news. The bottom line is that they do not see any reason for intervention when the growth is so slow, and given that I am feeling better than I have at any time since my surgery a year ago, I totally agreed with that strategy. I’ll go back in early October for a CT scan and blood work to see if there has been any change. The purpose of the monitoring is to catch any increase in the growth rate of the tumor before I can detect any change in how I feel. If the growth rate picks up, then we’ll have to consider more rounds of the same chemo I had in Temple or participation in a clinical trial.
One more thing. When we visited the cancer center in June, the elevator was out of order, so we had to use the stairs to reach the second floor, and I was so winded by the climb that I had to wait a few minutes before checking in at the desk. Today I purposefully took the stairs and found that I was not nearly as short of breath this time. My body had made good progress in acclimating to the altitude in Denver. I still get short of breath at times, but given that my right diaphragm doesn’t work properly, I expect that may always be a problem, and I am happy with the improvement I’ve had.
June 27, 2011
News Article about My Oncologist
This afternoon Jana came across this article about research just released by my oncologist, Dr. Ross Camidge: http://www.uch.edu/about/news/2011/benefit-of-targeted-lung-cancer-therapy-confirmed/ While the clinical trial is not related to my mesothelioma, it provides another example of the kinds of targeted therapies that are being developed. Traditionally, cancer was treated by cutting it out, poisoning it with drugs that also damaged normal cells (for example producing the numbness and tingling in my hands and feet), and burning it out with radiation. Now, as the biology of cancer is becoming better understood, drugs, like Jana's Gleevec, are being created to counteract specific genetic/molecular targets. Perhaps it is just a matter of time before the "war on cancer" can come to an end. Congratulations to Dr. Camidge and the others working on this new drug, and best wishes for a fully positive outcome.
David
David
June 25, 2011
New Hospital, New Doctors
This week Jana and I established care with oncologists at the Cancer Center in the Anschutz Cancer Pavilion at the University of Colorado Hospital in Aurora.
Before I get to our meetings, I want to note the use of the word pavilion in the name of the building where the cancer center is housed. Wikipedia defines a pavilion as follows,
Pavilion may refer to a free-standing structure sited a short distance from a main residence, whose architecture makes it an object of pleasure. Large or small, there is usually a connection with relaxation and pleasure in its intended use.
Does it seem starage to you to use pavillion to describe the home of cancer doctors? It is one of several connected, but separate, bulidings that comprise the Anschutz Medical Campus, but it certainly doesn’t have a “connection with relaxation and pleasure”
I’ll have to say, though, that it was a pleasure to meet my two new doctors. After completing the requisite paperwork (permissions, medical history, etc.) and having my vital signs taken, we were escorted to an examination room to await my new doctor. Afer a while, another doctor, whom I was not expecting to see, came into the room, introduced himself, appologized for his Australian accent, and explained that we worked with my oncologist. Unfortunately, the person who organizes the paperwork for new patients has been out of the ofice for a few days, so the doctors had little information about me, and,we spent a good deal of time recapping the history of my mesothelioma. The doctor (lets call him The Aussie), then excused himself and returned a little while later with the doctor I was expecting to see who is from the UK (let’s call him The Brit). We then had a very good discussion of my case, and I learned several things.
1. The Brit and the Aussie are very knowledeable, very likeable, and very good at explaining things clearly. I’ve always thought that the British educational system does an excellent job of identifying and developing talent, and these gentlemen strengthened that belief.
2. They will review my records when they get them sorted out and present my case to their Tumor Board in, I suppose, a process similar to the review of my case at M. D. Anderson. The process is used for all new patients and provides a broad-based examination of my medical condition. I was very glad to hear about this.
3. The plan at this time is to continue with watchful waiting to see if my tumors begin to grow. If I start developing any new sysmptoms, I will contact them, but otherwise, I will go back on August for blood tests and imaging.
4. In discussing the origins of mesothelioma, I learned that teachers have a higher rate than many other occupations. Of course people who work in construction and ship building have much higher rates, but in an place like Denver where the really high-inidence occupations are less common, a good percentage of mesothelioma patients are or have been teachers. I think he said that teachers are the highest percentage of any occupational group in Denver. It seems that school systems looked for cheap insulation in the past and filled schools with asbestos, so maybe I didn’t get my mesothelioma from working in a refinery but from all my years in schools as a student and educator.
5. Finally, we discussed a clinical trial at the National Cancer Institute that I had found online and thought I might want to join. Both doctors had recently attended a international cancer conference where researchers presented the latest reports on their clinical trials, and it was their conclusion that the approach taken in the clinical trial did not seem to be panning out, and at the higher dose levels in this clinical trial, serious side effects were found that had not been observed in the Phase I trial. The substance being tested blocks a cell receptor that is needed for normal cell function, and even though the receptor is found more commonly on some cancer cells, imparing its function produced problems in healthy cells. Participation in the clinical trial is out.
Bottom line—I was really happy with my first visit with these doctors and look forward to having them manage the treatment of my mesothelioma.
Given that Jana’s case is much more straightforward there was not much new in meeting her oncologist who, by the way, is an American. We enjoyed meeting with him and found him also to be very knowledgeable, approachable, and a good communicator. He will see her in September after blood tests done at that time. He saw no reason to change her medication as long as it is working, just like her doctor in Texas.
Our next medical task is to get local primary care physicans. I’m turning 65 next January, so I asked my doctors if I should have a gerentologist, an old folks doctor, as my primary care physician. They just laughed. As one said, “If you went in there, they would think that you had brought your father in for an appointment.” And, “Sixty-five is the new 45.” I assume they would approve of Jana’s 90-year-old mother going to an gerontologist, even though her internist in Texas did say that she was in pretty good shape for someone 65. For her, 90 is the new 65.
David
P.S. Jana says I include more detail than people want to read. I apologize for that, but it is the level of detail I want to have when I read the posts again at a later time.
Before I get to our meetings, I want to note the use of the word pavilion in the name of the building where the cancer center is housed. Wikipedia defines a pavilion as follows,
Pavilion may refer to a free-standing structure sited a short distance from a main residence, whose architecture makes it an object of pleasure. Large or small, there is usually a connection with relaxation and pleasure in its intended use.
Does it seem starage to you to use pavillion to describe the home of cancer doctors? It is one of several connected, but separate, bulidings that comprise the Anschutz Medical Campus, but it certainly doesn’t have a “connection with relaxation and pleasure”
I’ll have to say, though, that it was a pleasure to meet my two new doctors. After completing the requisite paperwork (permissions, medical history, etc.) and having my vital signs taken, we were escorted to an examination room to await my new doctor. Afer a while, another doctor, whom I was not expecting to see, came into the room, introduced himself, appologized for his Australian accent, and explained that we worked with my oncologist. Unfortunately, the person who organizes the paperwork for new patients has been out of the ofice for a few days, so the doctors had little information about me, and,we spent a good deal of time recapping the history of my mesothelioma. The doctor (lets call him The Aussie), then excused himself and returned a little while later with the doctor I was expecting to see who is from the UK (let’s call him The Brit). We then had a very good discussion of my case, and I learned several things.
1. The Brit and the Aussie are very knowledeable, very likeable, and very good at explaining things clearly. I’ve always thought that the British educational system does an excellent job of identifying and developing talent, and these gentlemen strengthened that belief.
2. They will review my records when they get them sorted out and present my case to their Tumor Board in, I suppose, a process similar to the review of my case at M. D. Anderson. The process is used for all new patients and provides a broad-based examination of my medical condition. I was very glad to hear about this.
3. The plan at this time is to continue with watchful waiting to see if my tumors begin to grow. If I start developing any new sysmptoms, I will contact them, but otherwise, I will go back on August for blood tests and imaging.
4. In discussing the origins of mesothelioma, I learned that teachers have a higher rate than many other occupations. Of course people who work in construction and ship building have much higher rates, but in an place like Denver where the really high-inidence occupations are less common, a good percentage of mesothelioma patients are or have been teachers. I think he said that teachers are the highest percentage of any occupational group in Denver. It seems that school systems looked for cheap insulation in the past and filled schools with asbestos, so maybe I didn’t get my mesothelioma from working in a refinery but from all my years in schools as a student and educator.
5. Finally, we discussed a clinical trial at the National Cancer Institute that I had found online and thought I might want to join. Both doctors had recently attended a international cancer conference where researchers presented the latest reports on their clinical trials, and it was their conclusion that the approach taken in the clinical trial did not seem to be panning out, and at the higher dose levels in this clinical trial, serious side effects were found that had not been observed in the Phase I trial. The substance being tested blocks a cell receptor that is needed for normal cell function, and even though the receptor is found more commonly on some cancer cells, imparing its function produced problems in healthy cells. Participation in the clinical trial is out.
Bottom line—I was really happy with my first visit with these doctors and look forward to having them manage the treatment of my mesothelioma.
Given that Jana’s case is much more straightforward there was not much new in meeting her oncologist who, by the way, is an American. We enjoyed meeting with him and found him also to be very knowledgeable, approachable, and a good communicator. He will see her in September after blood tests done at that time. He saw no reason to change her medication as long as it is working, just like her doctor in Texas.
Our next medical task is to get local primary care physicans. I’m turning 65 next January, so I asked my doctors if I should have a gerentologist, an old folks doctor, as my primary care physician. They just laughed. As one said, “If you went in there, they would think that you had brought your father in for an appointment.” And, “Sixty-five is the new 45.” I assume they would approve of Jana’s 90-year-old mother going to an gerontologist, even though her internist in Texas did say that she was in pretty good shape for someone 65. For her, 90 is the new 65.
David
P.S. Jana says I include more detail than people want to read. I apologize for that, but it is the level of detail I want to have when I read the posts again at a later time.
May 20, 2011
Latest PET Scan Results and Goobye to Scott & White
This week there was once again matter/antimatter annihilation in the Meso-man (see July 4, 2010 post). I had a PET scan on Wednesday and received the results today in my final visit with my oncologist at Scott and White. The PET scan identifies areas of greater-than-average metabolism within the body. Bright areas that are not typically hypermetabolic are usually associated with cancer because of its rapid rate of growth. My scan showed no new areas in my thorax or anywhere else. Furthermore, some previously observed activity was not evident this time. That probably doesn’t mean that the body cleared out some cancer cells but that tissue that was hypermetabolic in response to my previous surgery returned to normal. At this time there are only two small areas of hypermetabolism, and they remain stable when compared with my last PET in January.
That is all good news. At this time, I don’t think I have any symptoms that are the direct result of the cancer; however, I still become more short of breath than I should when I exercise, but that may be the result of my surgery and my lack of exercise. We met briefly with the surgeon who did my pleurectomy last July, and he was really surprised at how good I look. He mused that it may be better that they did not remove my lung then because my quality of life might not be as good as it is now. For all medical science knows and can do, there is still a lot of uncertainty associated with some medical decisions. It has been a year since I was diagnosed with mesothelioma. While the data for determining survival rates is not very good, the expectation is that half of mesothelioma patients die within a year of diagnosis. I feel very lucky to be where I am with the disease and continue to hope to remain in the long tail of the survival curve (see “The Median Isn’t the Message.”).
Because we are moving to Denver in two weeks, this was a time to say goodbye to the doctors and nurses who have taken care of me here. They are uniformly impressive human beings—friendly, competent, caring, and of excellent character. I already have an appointment with an oncologist in Denver, and Jana should get her appointment today or Monday. We are hoping that they are equally as impressive.
David
That is all good news. At this time, I don’t think I have any symptoms that are the direct result of the cancer; however, I still become more short of breath than I should when I exercise, but that may be the result of my surgery and my lack of exercise. We met briefly with the surgeon who did my pleurectomy last July, and he was really surprised at how good I look. He mused that it may be better that they did not remove my lung then because my quality of life might not be as good as it is now. For all medical science knows and can do, there is still a lot of uncertainty associated with some medical decisions. It has been a year since I was diagnosed with mesothelioma. While the data for determining survival rates is not very good, the expectation is that half of mesothelioma patients die within a year of diagnosis. I feel very lucky to be where I am with the disease and continue to hope to remain in the long tail of the survival curve (see “The Median Isn’t the Message.”).
Because we are moving to Denver in two weeks, this was a time to say goodbye to the doctors and nurses who have taken care of me here. They are uniformly impressive human beings—friendly, competent, caring, and of excellent character. I already have an appointment with an oncologist in Denver, and Jana should get her appointment today or Monday. We are hoping that they are equally as impressive.
David
April 20, 2011
Good Leukemia News
We went to see Jana's oncologist this afternoon and received good news. Last summer, seven percent of her white blood cells showed the Philadelphia chromosome--the abnormality that causes her chronic myelogenous leukemia. As of a couple of weeks ago, the value is down to .016 percent. She has gone from 600 per 10,000 cells to less than 2 per 10,000 cells. The goal is to get to an undetectable level, and while she's not there yet, she is continuing to get better. She feels very good and has only occasional minor side effects. All in all, an excellent report.
Her doctor also said for me to hang in there because he is working to set up an FDA trial of a new chemotherapy for mesothelioma.
Her doctor also said for me to hang in there because he is working to set up an FDA trial of a new chemotherapy for mesothelioma.
March 18, 2011
Doctor's Appointment after Final Chemo
It's been five weeks since my last chemotherapy. I had an appointment with my oncologist today to get the results of recent lab work and a CT scan. My blood and kidneys are in good shape. The CT scan showed an increasing accumulation of fluid near the pericardium that will be examined with an echocardiogram in a little over a week. The doctor doesn't think it is anything to worry about, but then they never thought they would find mesothelioma when they did the thorascopy either. The cancer in the pericardium cannot be imaged by a CT scan, so there is no way to know if it has changed; however, the tumors that can be seen in other parts of the right chest, seem to be smaller than in the last scan.
My blood sugar levels are high again as they were a few years ago, so he started me on metformin. That and elevated blood pressure may be at least partly the result of the chemotherapy. We'll have to see what happens with time. I am looking forward to the echocardiagram, however, because I have not had that test before. Another opportunity to learn.
I want to urge you to take a look at the Uncle Sam and Gini entry if you have not done so yet. If you make it to the end, I’d be curious to know what you think.
There's not much cancer news now, so if you check by here periodically, you might want to extend the time between visits because I do not expect to write any new posts for a while. If I do, I'll put a note on Facebook so my friends there we know to take a look at Cancer Couple.
Best wishes for a beautiful spring (or fall for those in the southern hemisphere).
David
My blood sugar levels are high again as they were a few years ago, so he started me on metformin. That and elevated blood pressure may be at least partly the result of the chemotherapy. We'll have to see what happens with time. I am looking forward to the echocardiagram, however, because I have not had that test before. Another opportunity to learn.
I want to urge you to take a look at the Uncle Sam and Gini entry if you have not done so yet. If you make it to the end, I’d be curious to know what you think.
There's not much cancer news now, so if you check by here periodically, you might want to extend the time between visits because I do not expect to write any new posts for a while. If I do, I'll put a note on Facebook so my friends there we know to take a look at Cancer Couple.
Best wishes for a beautiful spring (or fall for those in the southern hemisphere).
David
February 17, 2011
Uncle Sam and Gini
Returning to the States in 2008, I was struck by the extreme range of income visible in the US compared with the military communities with which I had been associated overseas. Over the past two and a half years, I have become convinced that income inequality is a serious problem for the US and wrote a piece to put my thoughts in order.
I would be honored if you would take a look at Uncle Sam and Gini in the Other Pages column on the right, and let me know what I got wrong in my analysis.
Thanks.
David
I would be honored if you would take a look at Uncle Sam and Gini in the Other Pages column on the right, and let me know what I got wrong in my analysis.
Thanks.
David
February 12, 2011
This and That
Second Time to Ring the Bell
I don't know if they do this everywhere, but both the M. D. Anderson Cancer Center and Scott & White Healthcare have a big brass bell that patients ring when they have completed a course of cancer treatment. I rang my first bell at M. D. Anderson in late February, 2002 when I completed my radiation therapy for prostate cancer. Yesterday, I rang the bell after completing my chemotherapy for mesothelioma. It's possible that I'll have one or more additional chemotherapy courses later, but I'm glad to be done for now.
I'll go back for a PET scan and blood work in a month. and the results will set a baseline against which to compare scans and blood work every two months after that.
Jana's CML Blood Test Results
We also got blood test results for Jana yesterday. By mid-July, four weeks after starting Gleevec, Jana's white blood cell count had dropped about 96% and into the normal range. It has remained low since then, and the count on January 20 was actually slightly below normal.
The results of a more sensitive PCR blood test using DNA has also been positive. The test compares the ratio of the cancerous product of the cancer cells with the product of a ubiquitous product of all cells. The goal is to reach zero percent which is called the complete molecular response. At that point there are probably still aberrant stem cells turning out cancerous white blood cells, but the number is too small to be detected by the test.
Here are the results of her three PCR tests for the BCR/ABL translocations.
July 14, 2010: 6%
October 14, 2010: .05%
January 31, 2010: .04%
The change from October may not be particularly meaningful. It's in the right direction, but could be a result of the unreliability of the test. The report provides no interpretation. However, given the 96% drop in the WBC count in the four weeks prior to the first PCR test, I imagine the drop by October would be considered what they call a major molecular response. A complete molecular response is usually accomplished within 12-18 months of treatment with Gleevec, so the timeline for the complete molecular response stretches many months in the future.
David
I don't know if they do this everywhere, but both the M. D. Anderson Cancer Center and Scott & White Healthcare have a big brass bell that patients ring when they have completed a course of cancer treatment. I rang my first bell at M. D. Anderson in late February, 2002 when I completed my radiation therapy for prostate cancer. Yesterday, I rang the bell after completing my chemotherapy for mesothelioma. It's possible that I'll have one or more additional chemotherapy courses later, but I'm glad to be done for now.
I'll go back for a PET scan and blood work in a month. and the results will set a baseline against which to compare scans and blood work every two months after that.
Jana's CML Blood Test Results
We also got blood test results for Jana yesterday. By mid-July, four weeks after starting Gleevec, Jana's white blood cell count had dropped about 96% and into the normal range. It has remained low since then, and the count on January 20 was actually slightly below normal.
The results of a more sensitive PCR blood test using DNA has also been positive. The test compares the ratio of the cancerous product of the cancer cells with the product of a ubiquitous product of all cells. The goal is to reach zero percent which is called the complete molecular response. At that point there are probably still aberrant stem cells turning out cancerous white blood cells, but the number is too small to be detected by the test.
Here are the results of her three PCR tests for the BCR/ABL translocations.
July 14, 2010: 6%
October 14, 2010: .05%
January 31, 2010: .04%
The change from October may not be particularly meaningful. It's in the right direction, but could be a result of the unreliability of the test. The report provides no interpretation. However, given the 96% drop in the WBC count in the four weeks prior to the first PCR test, I imagine the drop by October would be considered what they call a major molecular response. A complete molecular response is usually accomplished within 12-18 months of treatment with Gleevec, so the timeline for the complete molecular response stretches many months in the future.
David
January 21, 2011
Oncologist Visit and PET Results Prior to Chemo Round 5
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
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 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
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