How things have changed from a couple of months ago! It was pretty rough sailing then with increasing pain, tumors getting larger, less and less energy and more and more physical limitations.
The phrase "keeping and even keel," of course, is a nautical term for steadiness and/or control of a vessel, regardless of the weather and sea conditions. Sometimes it's easier than others to keep an even keel and I find it much easier now than in December and January.
It's interesting to look back and recall how my perspective was closing in on me.
Do-able distances were getting shorter -- for walking, for daily area activities and for traveling. At Christmas I had to pass on a day of sightseeing in the city and a trip to Alcatraz with the family because I just didn't have the stamina for that type of outing. I hesitated going too far from the house for too long, concerned that I would get over-fatigued and pay the price for it later with increased pain.
Time horizons were shrinking as well. Rather than thinking about plans for Spring or Summer, I could only see out a few weeks, or even days. I just didn't have the confidence in my health to venture any plans beyond that.
The sea was choppy and getting more turbulent day by day. I was stuck in open water, not sure of my course and my harbor of refuge, if I were to reach one, was still distant.
With a positive response to the medications I am on, however, my perspective is getting back to normal. I feel comfortable leaving the house for the day, going shopping and out for lunch without physically taxing myself. Activities like running, tennis and biking are renewed possibilities. We are even making plans to get back on to the boat in a couple of months and cruise with friends down to the Bahamas.
That's not to say I still don't have to work at keeping an even keel. As well as I am responding to the medication, there is just not enough experience with these new immunotherapy protocols to know how long they will work and wether or not the effect is durable. I don't know how long I will need to have these bi-weekly infusions and I don't know how long the cancer will be repressed.
I am also still testing, and learning, my current physical limits. Is my increased pain today a result of my increased activity yesterday? Will my side effects get worse, or my immune response diminish if I push myself too hard? Will there be days I will need to restrain myself from doing what I want for the longer term benefit of my health?
These questions, though, will have to be considered in the context of getting back onto the boat. That is something I look forward to with great anticipation. During those most difficult days and nights, to help me remain steady, in control and centered, I imagined myself at the helm of my boat, keeping an even keel.
Wednesday, February 26, 2014
Tuesday, February 18, 2014
MELANOMA - TIME FOR STAGE 5?
The normal staging to describe the level of involvement, or severity, of melanoma is a four-step scale, Stage 1 through Stage 4, with Stage 1 representing a lesion limited to the skin surface but progression of the disease to include distant metastases, usually involving major organs such as liver, lung and/or brain, is described as Stage 4. There are technical definitions of the interim stages and sub-stages but, basically, the higher the number, the worse the disease and the greater degree of mortality. Up to just a few years ago, Stage 4 was the advanced form of the disease which usually meant a limited future lifespan.
I was diagnosed as Stage 4 in November of last year with metastatic disease in my head/neck, leg and lungs. Applying my knowledge of advanced melanoma (which was as current as Medical School, circa 1982), I assumed I had only months to live. Perspective in my life rapidly changed. Existential thoughts crowded out most other reasoning and emotions crescendoed and surfaced regularly. Meditation was a necessity to keep an even keel while navigating this turbulent course but it gradually allowed me to put mortality into perspective, as uncomfortable as that thought was.
All the time this was going on, the scientist in me kept up the research on current and future therapies for melanoma, now that I had a vested interest. Through this research I discovered an approved therapeutic drug for Stage 4 which had shown some response and I found a nearby Phase III clinical trial for an investigational drug which had shown impressive results in the earlier trial phases. The result of my research is my participation in the clinical trial, receiving standard Stage 4 therapy of Yervoy (ipilimumab) combined with either nivolumab or a placebo.
My first infusion of these drugs was on January 7th and today, February 18th, I am receiving my third infusion in a protocol that lasts a total of about a year. So, I have been exposed to these drugs for 6 weeks now. The first few weeks were a bit rough, but things are definitely looking up. I can no longer feel any of the metastatic bumps that were on my scalp - they are just plain gone! There is some tenderness, still, in my neck, but otherwise things are pretty much back to normal there. The chronic cough I have had since November is gone completely, as are any pulmonary symptoms like shortness of breath or bronchospasm. The largest tumor, which was in my leg, has shrunk to the point of being asymptomatic and difficult to find.
Although the clinical trial is double-blinded (no one knows if I am receiving the investigational drug or a placebo), the overall consensus in my oncologist's office is that I'm getting the active drug, since they have never seen such a rapid clinical response with only the Yervoy. (I'll be getting imaging studies in a few weeks to quantitate my response.)
Now that there is a few years of experience with immunotherapy drugs targeted at melanoma, there is a sub-population of patients with no evidence of disease (NED) following treatment. People are reluctant to use the word "cure" when it comes to these patients, since melanoma has such a history of recurrence, but these new drugs may be changing that paradigm. For now, if no active disease can be found through post-treatment evaluations such as CT scans, MRIs and PET scans, the terms "remission," "dormancy" or just "no evidence of disease" are being used.
Until there is a level of confidence and comfort using the word "cure," I propose that the taxonomy for NED following immunotherapy for melanoma be more consistent with the optimistic future progression of the disease and be referred to as "Stage 5."
Wouldn't it be nice to see movement from Stage 4 to Stage 5 be the expectation for those afflicted with melanoma?
I was diagnosed as Stage 4 in November of last year with metastatic disease in my head/neck, leg and lungs. Applying my knowledge of advanced melanoma (which was as current as Medical School, circa 1982), I assumed I had only months to live. Perspective in my life rapidly changed. Existential thoughts crowded out most other reasoning and emotions crescendoed and surfaced regularly. Meditation was a necessity to keep an even keel while navigating this turbulent course but it gradually allowed me to put mortality into perspective, as uncomfortable as that thought was.
All the time this was going on, the scientist in me kept up the research on current and future therapies for melanoma, now that I had a vested interest. Through this research I discovered an approved therapeutic drug for Stage 4 which had shown some response and I found a nearby Phase III clinical trial for an investigational drug which had shown impressive results in the earlier trial phases. The result of my research is my participation in the clinical trial, receiving standard Stage 4 therapy of Yervoy (ipilimumab) combined with either nivolumab or a placebo.
My first infusion of these drugs was on January 7th and today, February 18th, I am receiving my third infusion in a protocol that lasts a total of about a year. So, I have been exposed to these drugs for 6 weeks now. The first few weeks were a bit rough, but things are definitely looking up. I can no longer feel any of the metastatic bumps that were on my scalp - they are just plain gone! There is some tenderness, still, in my neck, but otherwise things are pretty much back to normal there. The chronic cough I have had since November is gone completely, as are any pulmonary symptoms like shortness of breath or bronchospasm. The largest tumor, which was in my leg, has shrunk to the point of being asymptomatic and difficult to find.
Although the clinical trial is double-blinded (no one knows if I am receiving the investigational drug or a placebo), the overall consensus in my oncologist's office is that I'm getting the active drug, since they have never seen such a rapid clinical response with only the Yervoy. (I'll be getting imaging studies in a few weeks to quantitate my response.)
Now that there is a few years of experience with immunotherapy drugs targeted at melanoma, there is a sub-population of patients with no evidence of disease (NED) following treatment. People are reluctant to use the word "cure" when it comes to these patients, since melanoma has such a history of recurrence, but these new drugs may be changing that paradigm. For now, if no active disease can be found through post-treatment evaluations such as CT scans, MRIs and PET scans, the terms "remission," "dormancy" or just "no evidence of disease" are being used.
Until there is a level of confidence and comfort using the word "cure," I propose that the taxonomy for NED following immunotherapy for melanoma be more consistent with the optimistic future progression of the disease and be referred to as "Stage 5."
Wouldn't it be nice to see movement from Stage 4 to Stage 5 be the expectation for those afflicted with melanoma?
Friday, February 14, 2014
BAD NEWS, GOOD NEWS
Well, I think I pretty much covered the bad news on my last post, so it's probably time for some good news.This past year has been such a volatile journey with all of its ups and downs that it kind of reminds me of a story from my distant past.
When I was a pre-teen, I would occasionally visit an uncle and aunt on their farm in the Midwest. Uncle Bill quickly became a favorite uncle when he let me drive his old Ford tractor around the farmyard. His wife, Aunt Adeline, was a reserved farm wife who seemed to always be cooking, but also always engaged in conversation with company in the huge old farmhouse kitchen where family, friends and farmhands congregated. The structure of her conversations, however, was more "story telling" than just relaying information, so listening to her was very entertaining. One account I remember well was when she described Uncle Bill's "accident:"
The bad news was that a severe summer storm damaged the roof of the barn but the good news was that we had spare metal panels to replace the damaged ones, so Bill climbed up on the roof to make the repair. The bad news was that he lost his footing and started sliding off the roof. The good news is that there was a large haystack under him. The bad news is that there were several pitchforks in the haystack. The good news is that he missed all of the pitchforks. The bad news is that he missed the haystack.
Luckily, he healed from his injuries and it became just one more historical event in the life of a farmer, but it often reminds me of the interplay of chance and good news/bad news.
My good news is that the worst of the pain seems to be over and I'm seeing some progress toward where I want to be rather than where I was. In just the past few days I've noticed an upsurge in energy, feeling stronger and able to get much more done in a day without having to take an afternoon nap. I have not needed pain meds for about a week, my chronic, non-productive cough is almost gone and the tumors that I have been able to feel (on my scalp, in my neck and in my leg) have either disappeared or been reduced in size by at least 50%. The severe pain in my jaw and the limited range of motion of my TMJ have almost completely resolved. Several areas on my skin, which I assume were basal cell or early squamous cell carcinomas, got very inflamed, scabbed over, and are now just flat white scars.
All of this in the first six weeks and after just the first 2 of 4 combination infusions (the standard Stage 4 drug Yervoy plus either the investigational drug or a placebo). When this phase is complete, then, I will receive a series of infusions every two weeks of just the investigational drug. This adds to the good news in that I am, at least to some degree or another, a "responder," and the drug(s) are working as intended.
I still have a ways to go, however. With all of my renewed energy, I worked out for a couple of hours the other day, but paid the price later with some significant abdominal pain from my liver reacting to too much activity. This is likely just a bothersome side effect of the drugs (along with a rash and total-body itching) and being somewhat hypermetabolic, so I'll back off a bit and take things easier while my body is still at war with the cancer. There is still risk of more significant side effects as I receive more infusions.
All in all, though, more good news than bad news!
When I was a pre-teen, I would occasionally visit an uncle and aunt on their farm in the Midwest. Uncle Bill quickly became a favorite uncle when he let me drive his old Ford tractor around the farmyard. His wife, Aunt Adeline, was a reserved farm wife who seemed to always be cooking, but also always engaged in conversation with company in the huge old farmhouse kitchen where family, friends and farmhands congregated. The structure of her conversations, however, was more "story telling" than just relaying information, so listening to her was very entertaining. One account I remember well was when she described Uncle Bill's "accident:"
The bad news was that a severe summer storm damaged the roof of the barn but the good news was that we had spare metal panels to replace the damaged ones, so Bill climbed up on the roof to make the repair. The bad news was that he lost his footing and started sliding off the roof. The good news is that there was a large haystack under him. The bad news is that there were several pitchforks in the haystack. The good news is that he missed all of the pitchforks. The bad news is that he missed the haystack.
Luckily, he healed from his injuries and it became just one more historical event in the life of a farmer, but it often reminds me of the interplay of chance and good news/bad news.
My good news is that the worst of the pain seems to be over and I'm seeing some progress toward where I want to be rather than where I was. In just the past few days I've noticed an upsurge in energy, feeling stronger and able to get much more done in a day without having to take an afternoon nap. I have not needed pain meds for about a week, my chronic, non-productive cough is almost gone and the tumors that I have been able to feel (on my scalp, in my neck and in my leg) have either disappeared or been reduced in size by at least 50%. The severe pain in my jaw and the limited range of motion of my TMJ have almost completely resolved. Several areas on my skin, which I assume were basal cell or early squamous cell carcinomas, got very inflamed, scabbed over, and are now just flat white scars.
All of this in the first six weeks and after just the first 2 of 4 combination infusions (the standard Stage 4 drug Yervoy plus either the investigational drug or a placebo). When this phase is complete, then, I will receive a series of infusions every two weeks of just the investigational drug. This adds to the good news in that I am, at least to some degree or another, a "responder," and the drug(s) are working as intended.
I still have a ways to go, however. With all of my renewed energy, I worked out for a couple of hours the other day, but paid the price later with some significant abdominal pain from my liver reacting to too much activity. This is likely just a bothersome side effect of the drugs (along with a rash and total-body itching) and being somewhat hypermetabolic, so I'll back off a bit and take things easier while my body is still at war with the cancer. There is still risk of more significant side effects as I receive more infusions.
All in all, though, more good news than bad news!
Saturday, February 8, 2014
NO PAIN, NO GAIN?
The frequency of my writing has dropped off a bit - primarily due to how I've been feeling. Everyone seems to react differently to ipilimumab, the known drug I am getting (I'm also getting either an investigational drug or a placebo), but a significant reaction for me has been pain. Although every day seems to be different, a typical day starts out okay with minimal discomfort, especially if I have had a restful night. Throughout the day, depending on my activity level, I gradually become more and more aware of discomfort in the area of my tumors. Usually by mid-afternoon I've tried to rest and practice some relaxation techniques, but if that doesn't make things better, it's time for the narcotics. One pill a day does it for the average day- on the rare day I might need two.
I'm convinced that the pain is a result of an inflammatory reaction precipitated by the drug and represents what I want to happen - my immune system attacking the cancer tissue.
In general, I've always been the type of person that feels hard work tends to be rewarded.
When I was involved with competitive sports I felt that if I worked harder I could compete better. In the workplace, if I wanted the best outcomes I had to work hard for them. The more effort put into something, the more reward was realized, and, usually, the hard work was accompanied by at least some level of sacrifice or discomfort. I once heard a story that early in his boxing career Cassius Clay (later Muhammad Ali) said he only started counting his daily sit-ups after they started hurting - they were the only ones that meant anything.
With this ethic in mind, I feel like I should be working harder to rid my body of cancer. But, under the circumstances, there's not much more I can do. I'm getting good nutrition, I'm using relaxation and meditation techniques to calm my mind and emotions, I'm getting adequate rest, I'm keeping a positive attitude. With a more typical health challenge I'd do more, work out more, actively do something else that would improve the situation. Right now I have to convince myself that the best thing I can do is stand back and let my immune system get this fight underway.
My immune system is obviously working hard. It's working hard enough that I feel the pain - and, hopefully, will realize the gain.
I'm convinced that the pain is a result of an inflammatory reaction precipitated by the drug and represents what I want to happen - my immune system attacking the cancer tissue.
In general, I've always been the type of person that feels hard work tends to be rewarded.
When I was involved with competitive sports I felt that if I worked harder I could compete better. In the workplace, if I wanted the best outcomes I had to work hard for them. The more effort put into something, the more reward was realized, and, usually, the hard work was accompanied by at least some level of sacrifice or discomfort. I once heard a story that early in his boxing career Cassius Clay (later Muhammad Ali) said he only started counting his daily sit-ups after they started hurting - they were the only ones that meant anything.
With this ethic in mind, I feel like I should be working harder to rid my body of cancer. But, under the circumstances, there's not much more I can do. I'm getting good nutrition, I'm using relaxation and meditation techniques to calm my mind and emotions, I'm getting adequate rest, I'm keeping a positive attitude. With a more typical health challenge I'd do more, work out more, actively do something else that would improve the situation. Right now I have to convince myself that the best thing I can do is stand back and let my immune system get this fight underway.
My immune system is obviously working hard. It's working hard enough that I feel the pain - and, hopefully, will realize the gain.
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