Since the date of my last entry, in late November, a great deal has occurred in my battle with Myeloma, but all of it favorable, on balance, bearing in mind that Myeloma is an aggressive cancer that requires aggressive treatment to be successful.
The high-dose part of my chemotherapy lasted from June through mid-December, during which time I was receiving intravenous treatment twice-weekly. The effect of the chemotherapy was pronounced: my cancel level was falling rapidly, but not without significant side effects from the toxic qualities of the drugs.
Among the drugs I was taking, Doxil is perhaps the most toxic, and it builds up in your system cumulatively over time. In my case, it resulted in "hand-foot syndrome", a common toxic side effect which causes painful swelling of the hands and feet, and cracking and peeling of the skin. By early December, the discomfort was chronic and painful. In addition, Velcade causes neuropathy, and my neuropathy had become pronounced by late November, affecting both my hands and feet, in which I experienced a pronounced loss of sensation. It was not pleasant.
My oncologist, Dr. Morton Coleman, recognizing the toxic side effects from which I was suffering, and my need for some relief, discontinued my last intravenous cycle in early December, and allowed me to go several weeks without any chemotherapy. In that period the worst of the toxic side effects subsided, and I began to regain my strength, going to the gym daily, and focusing on cardiovascular exercise (which has become my most important source of non-medical therapy). I also took a vacation with Denise in Florida for a week, together with my brother, Duncan, and my sister-in-law, which allowed me to put some perspective on what I had gone through for six months, and look beyond the "crisis treatment stage" of the disease. It was the first time I had travelled in six months, and it was a relief.
In January I started an entirely new chemotherapy regime, in pill format, consisting of Revlamid, a "miracle drug" manufactured by Cellgene, which is one of the new generation of drugs used to treat Myeloma, in tandem with Decadron (the steroid that I have already been taking) and a daily megadose of Biaxin, a powerful antiobiotic which, when taken in combination with Revlamid, enhances the efficacy of Revlamid, and acts as an "accelerant" in the suppression of Myeloma.
None of these drugs, in tandem, are nearly as toxic as the drugs that I was taking intravenously, which was perhaps the best development (although each of these drugs has toxic side effects). Revlamid is taken on a 20-day cycle, with ten days off before beginning the next cycle. While Revlamid does not cause neuropathy, it can cause thrombosis, and requires the patient to take a daily dose of aspirin to reduce the liklihood of that condition.
Decadron is taken in a high dose (40 milligrams), once a week. As a steroid, Decadron has a number of toxic side effects, including a tightening of all of the patient's muscles, requiring a constant effort to stretch to maintain flexibility. Incidentally, it also causes insomnia for several days. Biaxin, which is taken daily, has a variety of side effects, especially if taken without a meal, so most patients take Biaxin in the morning with breakfast.
The best news, however, is that these drugs, in this combination, are highly effective in fighting Myeloma, and my lab results reflect the progressive, favorable results: my cancer level is down dramatically, and headed toward what oncologists call "complete response".
However, the fact is that Myeloma is an aggressive cancer, and any oncologist who specializes in plasma cancers will tell you that the challenge is to keep the patient in "complete response", once achieved. For patients in my situation, the common prescription is "maintenance therapy", which is continued chemotherapy in pill format, at a less toxic level, indefinitely. It is, on balance, a small price to pay for keeping cancer in suppression.
With few exceptions I go to the gym every day in the morning, spending about half an hour stretching (to counteract the effects of the steroids), and at least half an hour doing cardiovascular exercise. Because of the persistent neuropathy I experience, I tend to spend most of my time either on the stairmill, described above, or on a spinning bike, both of which are quite manageable. The effect of cardiovascular exercise, in my case, is instant: it increases my circulation, which diminishes the effects of neuropathy, and immediately increases my energy level.
So now it is almost mid-March, and I have just completed my second full Revlamid cycle. My cancer level is way down, which is by far the best news. The toxic side effects are quite manageable. Subject to the views of Dr. Coleman, I will either go through one more full Revlamid cycle, or start to transition to a chemotherapy combination which is less toxic than the one I'm currently on. In either event, I continue to have absolute confidence in his judgment, and share in his confidence about the treatability of the disease, in my case.
Wednesday, March 10, 2010
Wednesday, November 18, 2009
Recent Developments
I've refrained from making any entries for some time, since there were no material developments to discuss, until recently. However, there have been several recent developments, most of them favorable, on balance.
My chemical and chemotherapy treatment cycle will end in the middle of December, and the markers for the level of my cancer continue to be very favorable: my IgG level is below 500, and reducing. The goal, in the vernacular of oncology, is to reach "complete response", or "CR", following which the goal is to keep the patient in CR through reliance upon maintenance therapy (which is another way of saying that the patient will continue to receive chemical and/or chemo therapy, but in pill format, avoiding the need to visit the doctor's office to receive intravenous treatment). All of the current indications are that I am headed toward a Complete Response with my current level of treatment. Achieving Complete Response is obviously a watershed event, since it allows the patient to go on maintenance therapy, consisting of drugs that, in general, are less toxic, and have fewer side effects than the drugs I presently take.
By changing the "cocktail" of drugs that are used in frontline therapy (which, in my case, include weekly treatments with Velcade, Deccadron, Doxil and Cytoxsin), in favor of less toxic drugs, the patient's immune system can start to rebuild, as both the white and red blood cell levels start to increase. That means, among other things, that I will be less susceptible to opportunistic infection (which has caused me to avoid travelling and crowded situations), which can be very debilitating, and potentially dangerous, for a patient with a compromised immune system. As a practical matter, it means that I can start to travel again, without fear of infection, several weeks after completion of my last treatment cycle.
However, I am not free of the side effects of myeloma, and the treatment I've been undergoing. The principal adverse side effect of my condition and its treatment is peripheral neuropathy, which causes a loss of sensation in the patient's feet and hands. (Neuropathy is caused by damage to the nerves, or the insulation around the nerves, called myelin. In either case, it adversely affects the transmission of electronic signals from the brain to the feet and hands, and results in degrees of numbness, tingling, and - for some individuals - pain in the hands and feet.)
In my case, I currently have significant numbness in the bottom of both feet, and a slight degree of numbness in most of my fingers. It is a very strange sensation, which is a continuous reminder of the fact that you have cancer, and are being treated with toxic drugs which, in the case of Velcade, cause or contribute to neuropathy. For someone who enjoys running, like me, and is accustomed to running severday days each week, the condition is especially frustrating, since I find that jogging or running now is difficult, because of the lack of sensation in my feet.
As an alternative, I try to go to the gym every day, where I use the stairmill (which is the one machine in the gym where you cannot cheat), which I find very beneficial, and alternatively a stationary bike. My neuropathy doesn't interfere with the use of either machine, and the exercise stimulates the circulation in my feet, which is beneficial.
In an effort to get better grasp of the extent of my neuropathy, I arranged to see Dr. Samuel Rappaport, a neurologist at New York Hospital to whom I was referred by Dr. Coleman. I underwent an initial neurological exam, which indicated, among other things, that I had neuropathy which was affecting my balance and reflexes, and then went back, today, for a two-hour nerve conduction study. In the exam the doctor attaches wires to the feet, legs and hands of the patient, and then administers a series of mild electric shocks, the effects of which are measured and observed on a computer which indicates the speed with which electric impulses are conveyed through the various nerves in those parts of your body. In addition, the doctor inserts a needle into various nerves, which transmits an electric impulse to the computer, providing an additional measurement of the conduction of impulses through the patient's nerve system. The entire process is somewhat uncomfortable, but quite bearable, and lasts a little over two hours. After the testing was completed, Dr. Rappaport analyzed the results of the study, and then shared his analysis with me. Again, the news was favorable and encouraging.
In my case, the test results indicate that my nerves have not been damaged, but the insulation around my nerves, in my feet and hands, has been. Since it takes longer for a nerve to regenerate than it takes to regenerate insulation around a nerve, that is favorable news. My degree of neuropathy is mild, according to Dr. Rappaport, and the condition is reversible, as my myelin regenerates over time. He believes that the destruction of the nerve insulation is being caused primarily by the cancer itself, and less by the toxicity of the Velcade (although neuropathy is a very common side effect of Velcade). He noted that, in the case of myeloma, cancerous cells can attack the sheathing on the patient's nerves, resulting in the gradual destruction of the insulation, and causing neuropathy.
Dr. Rappaport believes that my neuropathy is unlikely to become materially worse than it is at present, and he also believes that, as my cancer level continues to fall, my condition will start to reverse itself, which was welcome news. He also indicated that regeneration of nerve insulation, and the corresponding reduction in the level of neuropathy, generally takes about six months.
I take encouragement from his analysis, because it holds out the prospect of no longer experiencing numbness in my hands and feet, and being able to run again, which for me has significant physical and pychological benefits.
In an effort to combat the effects of neuropathy, I have also started to receive accupunture treatments at the Memorial Sloan Kettering Integrative Medicine Center, which have been proven to be effective with certain patients who experience the condition. The jury is still out, in terms of their effectiveness on my condition.
In the meantime, going to the gym on a daily basis in one of the most important parts of my therapy, and is essential to regaining the conditioning that I lost through almost four months of inactivity, when I was going through the most intense part of my chemotherapy. I have a long way to go, but I am making a determined and disciplined effort each day.
More entries to follow, as I reach the end of my current treatment cycle.
My chemical and chemotherapy treatment cycle will end in the middle of December, and the markers for the level of my cancer continue to be very favorable: my IgG level is below 500, and reducing. The goal, in the vernacular of oncology, is to reach "complete response", or "CR", following which the goal is to keep the patient in CR through reliance upon maintenance therapy (which is another way of saying that the patient will continue to receive chemical and/or chemo therapy, but in pill format, avoiding the need to visit the doctor's office to receive intravenous treatment). All of the current indications are that I am headed toward a Complete Response with my current level of treatment. Achieving Complete Response is obviously a watershed event, since it allows the patient to go on maintenance therapy, consisting of drugs that, in general, are less toxic, and have fewer side effects than the drugs I presently take.
By changing the "cocktail" of drugs that are used in frontline therapy (which, in my case, include weekly treatments with Velcade, Deccadron, Doxil and Cytoxsin), in favor of less toxic drugs, the patient's immune system can start to rebuild, as both the white and red blood cell levels start to increase. That means, among other things, that I will be less susceptible to opportunistic infection (which has caused me to avoid travelling and crowded situations), which can be very debilitating, and potentially dangerous, for a patient with a compromised immune system. As a practical matter, it means that I can start to travel again, without fear of infection, several weeks after completion of my last treatment cycle.
However, I am not free of the side effects of myeloma, and the treatment I've been undergoing. The principal adverse side effect of my condition and its treatment is peripheral neuropathy, which causes a loss of sensation in the patient's feet and hands. (Neuropathy is caused by damage to the nerves, or the insulation around the nerves, called myelin. In either case, it adversely affects the transmission of electronic signals from the brain to the feet and hands, and results in degrees of numbness, tingling, and - for some individuals - pain in the hands and feet.)
In my case, I currently have significant numbness in the bottom of both feet, and a slight degree of numbness in most of my fingers. It is a very strange sensation, which is a continuous reminder of the fact that you have cancer, and are being treated with toxic drugs which, in the case of Velcade, cause or contribute to neuropathy. For someone who enjoys running, like me, and is accustomed to running severday days each week, the condition is especially frustrating, since I find that jogging or running now is difficult, because of the lack of sensation in my feet.
As an alternative, I try to go to the gym every day, where I use the stairmill (which is the one machine in the gym where you cannot cheat), which I find very beneficial, and alternatively a stationary bike. My neuropathy doesn't interfere with the use of either machine, and the exercise stimulates the circulation in my feet, which is beneficial.
In an effort to get better grasp of the extent of my neuropathy, I arranged to see Dr. Samuel Rappaport, a neurologist at New York Hospital to whom I was referred by Dr. Coleman. I underwent an initial neurological exam, which indicated, among other things, that I had neuropathy which was affecting my balance and reflexes, and then went back, today, for a two-hour nerve conduction study. In the exam the doctor attaches wires to the feet, legs and hands of the patient, and then administers a series of mild electric shocks, the effects of which are measured and observed on a computer which indicates the speed with which electric impulses are conveyed through the various nerves in those parts of your body. In addition, the doctor inserts a needle into various nerves, which transmits an electric impulse to the computer, providing an additional measurement of the conduction of impulses through the patient's nerve system. The entire process is somewhat uncomfortable, but quite bearable, and lasts a little over two hours. After the testing was completed, Dr. Rappaport analyzed the results of the study, and then shared his analysis with me. Again, the news was favorable and encouraging.
In my case, the test results indicate that my nerves have not been damaged, but the insulation around my nerves, in my feet and hands, has been. Since it takes longer for a nerve to regenerate than it takes to regenerate insulation around a nerve, that is favorable news. My degree of neuropathy is mild, according to Dr. Rappaport, and the condition is reversible, as my myelin regenerates over time. He believes that the destruction of the nerve insulation is being caused primarily by the cancer itself, and less by the toxicity of the Velcade (although neuropathy is a very common side effect of Velcade). He noted that, in the case of myeloma, cancerous cells can attack the sheathing on the patient's nerves, resulting in the gradual destruction of the insulation, and causing neuropathy.
Dr. Rappaport believes that my neuropathy is unlikely to become materially worse than it is at present, and he also believes that, as my cancer level continues to fall, my condition will start to reverse itself, which was welcome news. He also indicated that regeneration of nerve insulation, and the corresponding reduction in the level of neuropathy, generally takes about six months.
I take encouragement from his analysis, because it holds out the prospect of no longer experiencing numbness in my hands and feet, and being able to run again, which for me has significant physical and pychological benefits.
In an effort to combat the effects of neuropathy, I have also started to receive accupunture treatments at the Memorial Sloan Kettering Integrative Medicine Center, which have been proven to be effective with certain patients who experience the condition. The jury is still out, in terms of their effectiveness on my condition.
In the meantime, going to the gym on a daily basis in one of the most important parts of my therapy, and is essential to regaining the conditioning that I lost through almost four months of inactivity, when I was going through the most intense part of my chemotherapy. I have a long way to go, but I am making a determined and disciplined effort each day.
More entries to follow, as I reach the end of my current treatment cycle.
Friday, October 9, 2009
Halfway
On Monday of this week I reached, with some delays, my halfway point in chemical and chemotherapy treatment. Under the adjusted schedule, I will now finish at the end of the first week of December, instead of finishing in late November, as originally scheduled.
While I regard reaching the halfway point as a major milestone, especially since my cancer level has been reduced dramatically (as described below), it was demoralizing to realize that, having started the process in late June, I am only halfway.
First, the good news. Measured by a marker known as IgG, a particular type of immunoglobulin (or antibody) which is produced by plasma cells that are cancerous (and therefore serves as an indicator of the level of cancer a patient has at any time), my level of cancer has reduced dramatically, from an IgG level of 6600 (which is extremely high) to approximately 500 at present. (Immunoglobulins are gamma globulin proteins that are found in the blood and are used by the immune system to identify and neutralize foreign objects, like viruses, and cancer.)
While I don't believe an indivdual's IgG level can be reduced to zero (because it is a protein in the blood cell) , it can be reduced to a very low level, reflecting the destruction of cancerous plasma cells. In any event, the objective of the chemical and chemo therapy is to reduce the cancerous plasma cells to zero.
The second item of good news is that, in resuming my treatment, Dr. Coleman decided to reduce the dosage level of the two most powerful chemicals with which I'm treated, Decadron and Velcade. Both have very powerful side effects, which are dimished in their effects as dosage levels go down.
Decadon, a steroid, at high dosage levels shuts down an individual's natural production of hormonal steroids, which is a primary source of energy for everyone, every day, and also "disarms" a patient's immune system. (It serves, effectively, as an "accelerant" for Velcade, which can funtion more efficiently if unobstructed by a patient's immune system.) By shutting down the production of natural steroids at a high dosage level, the patient's system simply shuts down, which doctors and their staff refer to as "crashing". Speaking from my own experience, approximately 24 hours after receiving a high dose of Decadron (which I did twice a week, every week for three weeks in a row, and only one week off), I became unable to function. I felt severely fatigued, way beyond anything I had every previously experienced. Conventional functioning became an enormous challenge. As a practical matter, for about 24 hours I had little or no energy, and a very finite tolerance for any physical exertion. After that, a more natural level of energy returned, until the next treatment.
My Decadron level has been reduced by half, and it makes an enormous difference: I no longer "crash" after each treatment, but can funtion very effectively, with a normal energy level.
Now the unfavorable news. Velcade, which is the most important anti-cancer drug I take each week, and targets and poisons myeloma cells, has several significant side effects, the most troublesome of which is "peripheral neuropathy". Perhipheral neuropathy is a term used to describe damage to the nerves of the peripheral nervous system (or neurons), which can be caused by diseases of the nerve, or from the side-effects of illness or medication used to treat illness.
Velcade produces neuropathy in patients, which manifests itself either as a burning sensation in the hands and/or feet, or the loss of sensation, or numbness. By destroying neurons in the hands and feet, Velcade interferes with the natural transmission of nerve signals through the neurons. In my case (and I'm sure most patients), it means that your feet feel quite numb, all of the time, making it impossible (or nearly impossible) to job or run, and requiring that you exercise caution when walking, so that your feet are always on a flat surface.
It is reversible, once the treatment stops, but in the meantime its a nuissance, and feels quite strange. It doesn't prevent me from rowing, biking, or using the stairmill (that's the one you can't cheat on), but it does prevent me from running, which is frustrating, since the fall is the most enjoyable running season. You simply adopt coping strategies to deal with the loss of sensation in your feet, cautious not to exceed what you can manage, in terms of use of your feet.
Finally, Decadron also causes insomnia, which you also have to learn to cope with. It is manageable, but inconvenient. Like other cancer patients, I've adopted coping strategies which work fairly well.
Overall, my energy level is excellent, which is a nice turn of events, and my attitude is exceedingly positive, supported by my determination to get through this process successfully, and aided by the extradinary support of my wife, Denise, and by the extraordinary attention I receive from Dr. Coleman and his nursing staff. I have a long road to get all of my strength back, but that is simply a matter of time and effort.
Further entries to come.
While I regard reaching the halfway point as a major milestone, especially since my cancer level has been reduced dramatically (as described below), it was demoralizing to realize that, having started the process in late June, I am only halfway.
First, the good news. Measured by a marker known as IgG, a particular type of immunoglobulin (or antibody) which is produced by plasma cells that are cancerous (and therefore serves as an indicator of the level of cancer a patient has at any time), my level of cancer has reduced dramatically, from an IgG level of 6600 (which is extremely high) to approximately 500 at present. (Immunoglobulins are gamma globulin proteins that are found in the blood and are used by the immune system to identify and neutralize foreign objects, like viruses, and cancer.)
While I don't believe an indivdual's IgG level can be reduced to zero (because it is a protein in the blood cell) , it can be reduced to a very low level, reflecting the destruction of cancerous plasma cells. In any event, the objective of the chemical and chemo therapy is to reduce the cancerous plasma cells to zero.
The second item of good news is that, in resuming my treatment, Dr. Coleman decided to reduce the dosage level of the two most powerful chemicals with which I'm treated, Decadron and Velcade. Both have very powerful side effects, which are dimished in their effects as dosage levels go down.
Decadon, a steroid, at high dosage levels shuts down an individual's natural production of hormonal steroids, which is a primary source of energy for everyone, every day, and also "disarms" a patient's immune system. (It serves, effectively, as an "accelerant" for Velcade, which can funtion more efficiently if unobstructed by a patient's immune system.) By shutting down the production of natural steroids at a high dosage level, the patient's system simply shuts down, which doctors and their staff refer to as "crashing". Speaking from my own experience, approximately 24 hours after receiving a high dose of Decadron (which I did twice a week, every week for three weeks in a row, and only one week off), I became unable to function. I felt severely fatigued, way beyond anything I had every previously experienced. Conventional functioning became an enormous challenge. As a practical matter, for about 24 hours I had little or no energy, and a very finite tolerance for any physical exertion. After that, a more natural level of energy returned, until the next treatment.
My Decadron level has been reduced by half, and it makes an enormous difference: I no longer "crash" after each treatment, but can funtion very effectively, with a normal energy level.
Now the unfavorable news. Velcade, which is the most important anti-cancer drug I take each week, and targets and poisons myeloma cells, has several significant side effects, the most troublesome of which is "peripheral neuropathy". Perhipheral neuropathy is a term used to describe damage to the nerves of the peripheral nervous system (or neurons), which can be caused by diseases of the nerve, or from the side-effects of illness or medication used to treat illness.
Velcade produces neuropathy in patients, which manifests itself either as a burning sensation in the hands and/or feet, or the loss of sensation, or numbness. By destroying neurons in the hands and feet, Velcade interferes with the natural transmission of nerve signals through the neurons. In my case (and I'm sure most patients), it means that your feet feel quite numb, all of the time, making it impossible (or nearly impossible) to job or run, and requiring that you exercise caution when walking, so that your feet are always on a flat surface.
It is reversible, once the treatment stops, but in the meantime its a nuissance, and feels quite strange. It doesn't prevent me from rowing, biking, or using the stairmill (that's the one you can't cheat on), but it does prevent me from running, which is frustrating, since the fall is the most enjoyable running season. You simply adopt coping strategies to deal with the loss of sensation in your feet, cautious not to exceed what you can manage, in terms of use of your feet.
Finally, Decadron also causes insomnia, which you also have to learn to cope with. It is manageable, but inconvenient. Like other cancer patients, I've adopted coping strategies which work fairly well.
Overall, my energy level is excellent, which is a nice turn of events, and my attitude is exceedingly positive, supported by my determination to get through this process successfully, and aided by the extradinary support of my wife, Denise, and by the extraordinary attention I receive from Dr. Coleman and his nursing staff. I have a long road to get all of my strength back, but that is simply a matter of time and effort.
Further entries to come.
Wednesday, September 16, 2009
Some Useful Background Information
For those who are not familiar with how I learned about my cancer, and the progress that I've made, and some of the setbacks I've suffered in the process, I thought it would be helpful to provide some background information.
First and foremost, because of my athletic activities, my dedicated training habits, healthy eating habits, and generally healthy lifestyle (apart from my work-related stress issues), I thought I was impervious to any serious disease, including cancer. In the previous three years I had completed three triathlons, three regattas at the Head of the Charles with my Columbia teammates, and run virtually thousands of miles.
In May I was training for the New York City Triathlon, which I planned to compete in with my son, Peter. I had no problem in swimming and biking, but in running I discovered I had no endurance: for the first time in my life, I couldn't run a full mile without walking. I felt bewildered and perplexed.
By the middle of June I also started to experience acid reflux, which I had never previously experienced. Finally, on Tuesday, June 16th I visited my internist, Tom Nash, who thought that I probably had a perforated ulcer, and sent me for a CT scan that afternoon.
On the next morning he called to say that he had to see me that morning, right away. Needless to say, I was quite nervous. Once in his office, he said the three words you never want to hear: you have cancer. I had a tumor, located in my left abdomen, which was approximately seven to eight inches in diameter. It appeared to be intertwined with my intestines, and was growing very quickly. He was fairly confident that it was non-Hodgkins Lymphoma, which is both very treatable, and reasonably curable, if caught early. He sent me that afternoon to have a biopsy, which was quite painful, and ultimately inconclusive, since it suggested both NHL, but also myeloma, which is far more dangerous.
That evening Tom called to give me the phone number for Dr. Morton Coleman, one of the nation's leading experts on the treatment of both lymphoma and myeloma, and a senior oncologist at New York Hospital. He said that Dr. Coleman was the right oncologist for me, and that I would be very fortunate to be one of his patients.
Dr. Coleman called that evening, and Denise and I arranged to meet him in his office, near NY Hospital, on June 18th. Dr. Coleman, who is in late 60s, and is avuncular in a reassuring fashion similar to Walter Cronkite, said my biopsy results were unclear, and he said that correct treatment necessitated an accurate diagnosis of my cancer. However, he was generally reassuring, and seemed confident that I would get through this life-threatening experience successfully. For the first time, I had some sense of hope. After doing a bone biopsy (which is quite painful), he and Tom Nash agreed that I should undergo laproscopic surgery, to obtain a better cell sample for analysis.
I was referred to Kevin Morrissey, a senior surgeon at NY Hospital, who performed laproscopic surgery on me, at NY Hospital, on June 25th. After the surgery I was hospitalized for a day. After being discharged, in response to the anaesthia, I became violently ill, although I recovered by the next day. It was not a pleasant experience, although I recognized that Dr. Morrissey had done a superb job.
The additional lab results from my surgery disclosed that, in fact, I had myeloma, which was not welcome news. Denise and I were both a little in shock. After going on the internet to learn about myeloma, we were discouraged: it is a very dangerous blood cancer which attacks the bone marrow, usually in several locations, which is why it is called multiple myeloma, and is often fatal. The average life expectancy appeared to be 2-3 years (which, it turns out, is no longer accurate).
However, my bone biopsy disclosed that I had no cancer in my bone marrow, which is very unusal for myeloma, which is almost always found in the bone marrow.
Going on the internet, with a little investigative work, I concluded -- before speaking with Dr. Coleman -- that I had a very rare form of myeloma, called extra medullary plasmacytoma, which is a myeloma tumor in a patient's soft tissue, typically in the sinus or throat, but occasionally in other parts of the body, including the abdomen. It accounts for approximately 3% of all myeloma cases (a tiny percentage), and appeared to be quite treatable.
The next day Denise and I visited with Dr. Coleman, who confirmed my self-diagnosis, and was generally encouraging about my prospects, in view of the fact that the myeloma had not yet attacked my bone marrow. Denise and I both felt some higher level of reassurance, and hope. Dr. Coleman and his colleagues formulated a fairly aggressive regime of drug and chemotherapy, starting right away, that required me to be treated twice a week, for three consecutive weeks, with one week off.
I had only been on the regime of drug and chemotherapy (described below) for a short period when I had a significant setback. On Thursday, July 9th, Dr. Mark Pasmantier, Dr. Coleman's partner, looked at my blood results, and realized that I had a dangerously low red blood cell count, likely arising from some source of internal bleeding. I could barely stand up. He promptly arranged for my hospitalization through the Emergency Room at NY Hospital, where I was admitted a few minutes later, and was given, in short order, three pints of blood through transfusions, which had an immediate impact on my energy level. In an effort to identify the source of the internal bleeding, I was referred by Dr. Pasmantier to Mark Pochapin, the director of the Jay Monahan Center for Gastrointestinal Health. Dr. Pochapin, a relatively young but very distinguished physician who we found extremely impressive, and with a very reassuring bedside manner, arranged to do an endoscopy the following day. An endoscopy is a procedure in which they give you general anesthesia, and put a microscopic tube down your throat to examine your upper intestine. The procedure did not reveal any source of internal bleeding, so Dr. Pochapin decided that I should stay in the hospital for another day, in order to have a colonoscopy, to rule out that as a potential source of interna bleeding. Since both procedures require that you forego eating, I spent 48 hours without either eating (or sleeping). The evening before the colonoscopy I had to drink almost a half gallon of a horrible-tasting clear fluid, which took about three hours, leaving me -- temporarily -- with a fully bloated stomach, at about midnight. From midnight until the next morning I was up every half hour to rush to the bathroom, during the course of which I lost at least ten pounds, and managed to get virtually no sleep. When I was discharged on Saturday, July 11th, I could barely stand, having not slept or eaten in over two days. Denise drove us out to Sag Harbor, where that evening we attended the 59th birthday for Rick Prins, a close friend and classmate from Michigan Law School. We had a terrific time with a group of friends of Rick and his wife Connie, in their new home, and I felt liberated from the dismal experience of spending two days and evenings in the hospital. That was the first of my two major hospitalizations during my "cancer journey", at least to date.
I thought it would be helpful to describe the drug and chemotherapy I receive, to provide a sense of both what I benefit from, but also the side effects of the treatment.
Until three weeks ago, when my lung collapsed, I was receiving, twice a week, a combination of 50 ml of Decadron, a powerful steroid, and Velcade, a drug approved by the FDA in June of 2008 for patients initially diagnosed with myeloma (although it had been previously approved for patients who suffered a recurrence of myeloma).
Velcade is a "breakthrough drug" that is extremely effective in destroying myeloma cancer cells.
It is a proteasome inhibitor, which blocks the activity of proteasomes (enzymes that play an important role in cell function and growth), and disrupts the growth of cells, and the survival of myeloma cancer cells. In effect, Velcade targets and poisons the myeloma cells, without affecting any other cells (unlike chemotherapy), making it extremely effective. Combined with steroids, which act as an "accelerant" for Velcade, Velcade becomes even more effective in the destruction of cancer cells. I feel very lucky to be able to benefit from Velcade.
The megadose of steroids, combined with Velcade, has a very powerful effect on the patient, and in my case causes severe anemia within approximately 24 hours of treatment. (The steroids evidently "disarm" certain biological functions, like your immune system, and significantly enhance the effectiveness of Velcade.)
Every third week I also receive Cytoxan and Doxil, both very powerful forms of chemotherapy.
The combination of the drugs has had a powerful effect on me, many days often making it difficult to function. Velcade and the chemotherapy produce neuropothy, which is an interference with the transmission of nerve impulses from the brain to your hands and feet. As a result of the neuropothy, your legs can feel like they are encased in cement, walking is difficult at best, and on some mornings you can barely get out of bed. In addition, because of the chemotherapy, many food groups have become inedible, simply because they taste terrible. The drugs also cause constipation, so you need to take laxatives regulary to insure that you don't get into trouble.
In short, the effects of the drug and chemotherapy are significant, and require that you develop "coping strategies" to get by each day.
Let me take a moment here and acknowledge, with extraordinary gratitude, the extremely important, and self-sacrificial, role that Denise has played throughout the process of my treatment, and intermittent hospitalizations, making it possible for me to get through the treatment process. Denise has gone to every doctor's appointment, sat with me through every hospitalization, bringing in food that I could actually eat, monitors my daily medications, and has cared for me through some of the worst days, when I could barely stand up. She has cooked almost all of our meals, helped to change my diet in favor of healthier foods (that may also be beneficial for fighting cancer), done tons of laundry resulting from chronic neat sweats, and made every effort imaginable to be supportive. When my lung collapsed, she took me to the Emergency Room, and stayed until 2:00 am, and then stayed with me every day and late into the evening. When I was rushed to the hospital with a dangerously low red blood cell count, arising from internal bleeding, she escorted me into the ER, and stayed with me throughout the hospitalization. I simply cannot imagine going through this experience without the daily assistance, support and affection I receive from Denise. She has been an angel.
Until I contracted pneumonia, and subsequently suffered my lung collapse, I was receiving my drug and chemo treatments each week at the offices of Dr. Coleman. Now that I've largely recovered from my operation, and have most of my strength back, I anticipate that I will promptly resume drug and chemotherapy, which will now likely go through November.
However, the good news -- the great news -- is that my cancer is rapidly retreating. The marker used to measure my cancer level -- a protein called IGG -- has reduced from 6600 to less than 1100, and Dr. Coleman seems confident that, by the end of my treatments, the level will be reduced to zero. Denise and I are both thrilled at my progress, and confident in Dr. Coleman's ability to eliminate the myeloma from my system.
There is additional information about this experience which I haven't included, but I will include in later entries. The good news is that I appear to be making significant progress in my war on cancer, despite occasional setbacks, like the collapsed lung.
First and foremost, because of my athletic activities, my dedicated training habits, healthy eating habits, and generally healthy lifestyle (apart from my work-related stress issues), I thought I was impervious to any serious disease, including cancer. In the previous three years I had completed three triathlons, three regattas at the Head of the Charles with my Columbia teammates, and run virtually thousands of miles.
In May I was training for the New York City Triathlon, which I planned to compete in with my son, Peter. I had no problem in swimming and biking, but in running I discovered I had no endurance: for the first time in my life, I couldn't run a full mile without walking. I felt bewildered and perplexed.
By the middle of June I also started to experience acid reflux, which I had never previously experienced. Finally, on Tuesday, June 16th I visited my internist, Tom Nash, who thought that I probably had a perforated ulcer, and sent me for a CT scan that afternoon.
On the next morning he called to say that he had to see me that morning, right away. Needless to say, I was quite nervous. Once in his office, he said the three words you never want to hear: you have cancer. I had a tumor, located in my left abdomen, which was approximately seven to eight inches in diameter. It appeared to be intertwined with my intestines, and was growing very quickly. He was fairly confident that it was non-Hodgkins Lymphoma, which is both very treatable, and reasonably curable, if caught early. He sent me that afternoon to have a biopsy, which was quite painful, and ultimately inconclusive, since it suggested both NHL, but also myeloma, which is far more dangerous.
That evening Tom called to give me the phone number for Dr. Morton Coleman, one of the nation's leading experts on the treatment of both lymphoma and myeloma, and a senior oncologist at New York Hospital. He said that Dr. Coleman was the right oncologist for me, and that I would be very fortunate to be one of his patients.
Dr. Coleman called that evening, and Denise and I arranged to meet him in his office, near NY Hospital, on June 18th. Dr. Coleman, who is in late 60s, and is avuncular in a reassuring fashion similar to Walter Cronkite, said my biopsy results were unclear, and he said that correct treatment necessitated an accurate diagnosis of my cancer. However, he was generally reassuring, and seemed confident that I would get through this life-threatening experience successfully. For the first time, I had some sense of hope. After doing a bone biopsy (which is quite painful), he and Tom Nash agreed that I should undergo laproscopic surgery, to obtain a better cell sample for analysis.
I was referred to Kevin Morrissey, a senior surgeon at NY Hospital, who performed laproscopic surgery on me, at NY Hospital, on June 25th. After the surgery I was hospitalized for a day. After being discharged, in response to the anaesthia, I became violently ill, although I recovered by the next day. It was not a pleasant experience, although I recognized that Dr. Morrissey had done a superb job.
The additional lab results from my surgery disclosed that, in fact, I had myeloma, which was not welcome news. Denise and I were both a little in shock. After going on the internet to learn about myeloma, we were discouraged: it is a very dangerous blood cancer which attacks the bone marrow, usually in several locations, which is why it is called multiple myeloma, and is often fatal. The average life expectancy appeared to be 2-3 years (which, it turns out, is no longer accurate).
However, my bone biopsy disclosed that I had no cancer in my bone marrow, which is very unusal for myeloma, which is almost always found in the bone marrow.
Going on the internet, with a little investigative work, I concluded -- before speaking with Dr. Coleman -- that I had a very rare form of myeloma, called extra medullary plasmacytoma, which is a myeloma tumor in a patient's soft tissue, typically in the sinus or throat, but occasionally in other parts of the body, including the abdomen. It accounts for approximately 3% of all myeloma cases (a tiny percentage), and appeared to be quite treatable.
The next day Denise and I visited with Dr. Coleman, who confirmed my self-diagnosis, and was generally encouraging about my prospects, in view of the fact that the myeloma had not yet attacked my bone marrow. Denise and I both felt some higher level of reassurance, and hope. Dr. Coleman and his colleagues formulated a fairly aggressive regime of drug and chemotherapy, starting right away, that required me to be treated twice a week, for three consecutive weeks, with one week off.
I had only been on the regime of drug and chemotherapy (described below) for a short period when I had a significant setback. On Thursday, July 9th, Dr. Mark Pasmantier, Dr. Coleman's partner, looked at my blood results, and realized that I had a dangerously low red blood cell count, likely arising from some source of internal bleeding. I could barely stand up. He promptly arranged for my hospitalization through the Emergency Room at NY Hospital, where I was admitted a few minutes later, and was given, in short order, three pints of blood through transfusions, which had an immediate impact on my energy level. In an effort to identify the source of the internal bleeding, I was referred by Dr. Pasmantier to Mark Pochapin, the director of the Jay Monahan Center for Gastrointestinal Health. Dr. Pochapin, a relatively young but very distinguished physician who we found extremely impressive, and with a very reassuring bedside manner, arranged to do an endoscopy the following day. An endoscopy is a procedure in which they give you general anesthesia, and put a microscopic tube down your throat to examine your upper intestine. The procedure did not reveal any source of internal bleeding, so Dr. Pochapin decided that I should stay in the hospital for another day, in order to have a colonoscopy, to rule out that as a potential source of interna bleeding. Since both procedures require that you forego eating, I spent 48 hours without either eating (or sleeping). The evening before the colonoscopy I had to drink almost a half gallon of a horrible-tasting clear fluid, which took about three hours, leaving me -- temporarily -- with a fully bloated stomach, at about midnight. From midnight until the next morning I was up every half hour to rush to the bathroom, during the course of which I lost at least ten pounds, and managed to get virtually no sleep. When I was discharged on Saturday, July 11th, I could barely stand, having not slept or eaten in over two days. Denise drove us out to Sag Harbor, where that evening we attended the 59th birthday for Rick Prins, a close friend and classmate from Michigan Law School. We had a terrific time with a group of friends of Rick and his wife Connie, in their new home, and I felt liberated from the dismal experience of spending two days and evenings in the hospital. That was the first of my two major hospitalizations during my "cancer journey", at least to date.
I thought it would be helpful to describe the drug and chemotherapy I receive, to provide a sense of both what I benefit from, but also the side effects of the treatment.
Until three weeks ago, when my lung collapsed, I was receiving, twice a week, a combination of 50 ml of Decadron, a powerful steroid, and Velcade, a drug approved by the FDA in June of 2008 for patients initially diagnosed with myeloma (although it had been previously approved for patients who suffered a recurrence of myeloma).
Velcade is a "breakthrough drug" that is extremely effective in destroying myeloma cancer cells.
It is a proteasome inhibitor, which blocks the activity of proteasomes (enzymes that play an important role in cell function and growth), and disrupts the growth of cells, and the survival of myeloma cancer cells. In effect, Velcade targets and poisons the myeloma cells, without affecting any other cells (unlike chemotherapy), making it extremely effective. Combined with steroids, which act as an "accelerant" for Velcade, Velcade becomes even more effective in the destruction of cancer cells. I feel very lucky to be able to benefit from Velcade.
The megadose of steroids, combined with Velcade, has a very powerful effect on the patient, and in my case causes severe anemia within approximately 24 hours of treatment. (The steroids evidently "disarm" certain biological functions, like your immune system, and significantly enhance the effectiveness of Velcade.)
Every third week I also receive Cytoxan and Doxil, both very powerful forms of chemotherapy.
The combination of the drugs has had a powerful effect on me, many days often making it difficult to function. Velcade and the chemotherapy produce neuropothy, which is an interference with the transmission of nerve impulses from the brain to your hands and feet. As a result of the neuropothy, your legs can feel like they are encased in cement, walking is difficult at best, and on some mornings you can barely get out of bed. In addition, because of the chemotherapy, many food groups have become inedible, simply because they taste terrible. The drugs also cause constipation, so you need to take laxatives regulary to insure that you don't get into trouble.
In short, the effects of the drug and chemotherapy are significant, and require that you develop "coping strategies" to get by each day.
Let me take a moment here and acknowledge, with extraordinary gratitude, the extremely important, and self-sacrificial, role that Denise has played throughout the process of my treatment, and intermittent hospitalizations, making it possible for me to get through the treatment process. Denise has gone to every doctor's appointment, sat with me through every hospitalization, bringing in food that I could actually eat, monitors my daily medications, and has cared for me through some of the worst days, when I could barely stand up. She has cooked almost all of our meals, helped to change my diet in favor of healthier foods (that may also be beneficial for fighting cancer), done tons of laundry resulting from chronic neat sweats, and made every effort imaginable to be supportive. When my lung collapsed, she took me to the Emergency Room, and stayed until 2:00 am, and then stayed with me every day and late into the evening. When I was rushed to the hospital with a dangerously low red blood cell count, arising from internal bleeding, she escorted me into the ER, and stayed with me throughout the hospitalization. I simply cannot imagine going through this experience without the daily assistance, support and affection I receive from Denise. She has been an angel.
Until I contracted pneumonia, and subsequently suffered my lung collapse, I was receiving my drug and chemo treatments each week at the offices of Dr. Coleman. Now that I've largely recovered from my operation, and have most of my strength back, I anticipate that I will promptly resume drug and chemotherapy, which will now likely go through November.
However, the good news -- the great news -- is that my cancer is rapidly retreating. The marker used to measure my cancer level -- a protein called IGG -- has reduced from 6600 to less than 1100, and Dr. Coleman seems confident that, by the end of my treatments, the level will be reduced to zero. Denise and I are both thrilled at my progress, and confident in Dr. Coleman's ability to eliminate the myeloma from my system.
There is additional information about this experience which I haven't included, but I will include in later entries. The good news is that I appear to be making significant progress in my war on cancer, despite occasional setbacks, like the collapsed lung.
Friday, September 11, 2009
Recent Developments
For those of you who are not aware of what happened to me recently, I contracted pneumonia about four weeks ago, and went in for a standard lung exam, to identify what kind of pneumonia I had. During the course of what should have been a simple procedure, the physician accidentally punctured my lung, on August 20th. The next day, while I was on a conference call, my lung collapsed, which was indescribably painful. I managed, with difficulty, and with the guidance and support of Denise, to get to my doctor's office, to get a chest x-ray, which showed the lung collapsing. With Denise, I went directly to the Emergency Room of New York Hospital, where a team of doctors and nurses were waiting for me. They performed an emergency operation to re-inflate my lung (with heavy doses of morphine to dull the pain), and I was then hospitalized for a week, while my lung stabilized. It was an incredibly painful, and disruptive, experience. Denise was an angel, sitting with me all day each day and evening, and bringing in food for all three meals, since the hospital cuisine was, essentially, inedible.
Following my operation, and my subsequent hospitalization, I'm continuing my slow but steady progress in regaining my ability to breathe without difficulty, and also regaining, slowly, my stamina. My life is made easier by the fact that Denise provides incredible support each day, cooking meals, monitoring my medication, and going with me to all of my doctor's appointments.
What they don't tell you, when they discharge you after a lung re-inflation operation, is that you will experience difficulty in breathing for some time, and that your stamina level (reflecting a reduced lung capacity) is extremely low, resulting in significant fatigue from fairly minor physical activity. It takes weeks to regain your breathing capacity, during which you experience a lot of discomfort, and nearly constant fatigue.
I've been out of the hospital for exactly two weeks, and only now am I beginning to be able to breathe without difficulty, and also to have enough stamina to get through the day without difficulty.
Following my operation, and my subsequent hospitalization, I'm continuing my slow but steady progress in regaining my ability to breathe without difficulty, and also regaining, slowly, my stamina. My life is made easier by the fact that Denise provides incredible support each day, cooking meals, monitoring my medication, and going with me to all of my doctor's appointments.
What they don't tell you, when they discharge you after a lung re-inflation operation, is that you will experience difficulty in breathing for some time, and that your stamina level (reflecting a reduced lung capacity) is extremely low, resulting in significant fatigue from fairly minor physical activity. It takes weeks to regain your breathing capacity, during which you experience a lot of discomfort, and nearly constant fatigue.
I've been out of the hospital for exactly two weeks, and only now am I beginning to be able to breathe without difficulty, and also to have enough stamina to get through the day without difficulty.
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