One would think, that after living in this same body for over 66 years, that I would would know it pretty well by now. I've learned what happens when I take care of it and when I don't; when I push too hard or don't push hard enough; which signals I can ignore and which ones I must pay attention to…
But I'm still learning. Granted, I've been experiencing some new and different things lately -- things I had never experienced before -- so along with the new experiences come new insight into how my body is reacting to the internal war my immune system is waging to keep me healthy.
These insights do not appear passively. I need to maintain an almost constant vigil, keeping a mental inventory of actions and reactions, trials and results to keep up with the almost ever-changing status of my body.
There are days when I feel incredibly energized and just have to go for a run. Other days a long strenuous hike in the mountains is called for. Still other days my body tells me to relax, spend some time in the hot tub and get back into balance. One day I'm hungry all day and am constantly eating, the next day may be a complete change with minimal appetite. Through all of these changes, what I have noticed most clearly, is that If I don't pay attention and do what my body is telling me to do I get "out of sorts," my equilibrium is lost and I then need to focus more of my energies on regaining that "centered" feeling.
In some ways I feel this is a very selfish approach to living. I haven't always put my own needs and wants as top priority in my life, but, at least for now, it seems like this is what's being demanded by my body. Since it's the only body I have, and it's tough to keep going without it, I'd better listen up and try to comply with its demands.
It would be nice just to tell my body to "buck up, soldier" and take it for a run every morning, lift those weights to the point of fatigue like I did thirty years ago, raise the physical limits that have settled in over the past year, put my head down and charge into the physical challenges facing me. In the past I would have considered this type of behavior to reflect strong personal discipline - a positive trait. Now, it takes just as strong personal discipline to not behave in this manner. To exercise restraint, patience and control in responding to my body's needs.
I have mentioned in past writings that I am not the most patient person in the world. I have been known to challenge the status quo at times. But the "new normal" is that there are new limits for what my body will accept, and although I can challenge them, and hopefully expand them, I need to do so while maintaining a reasonable balance between "not enough" and "too much."
To paraphrase the writings of George Bernard Shaw, the reasonable man attempts to modify his values to stay within the constraints imposed by society while the unreasonable man attempts to modify the constraints of society to reflect his own values. Therefore all progress is made by unreasonable men.
The challenge: Be reasonably unreasonable!
Wednesday, April 16, 2014
Saturday, April 12, 2014
IT'S ALWAYS SOMETHING...
…If it isn't one thing, it's another. A classic line from Gilda Radner's Roseanne Roseannadanna character in her SNL days. It popped into my head the other day while I was chatting with my oncologist.
I had a PET scan a couple of days before that conversation and it confirmed the findings from my CT scan a week or so ago. The previous tumors appear to have resolved and the only significant findings of "weak-uptake" lesions are, more than likely, areas of resolving inflammation from my immune system attacking the cancer. My liver enzymes, which had elevated recently as a side-effect of the immunotherapy drugs, are responding to the steroid treatment and coming down.
I had thought that the infusions of the investigational drug would restart as my liver enzymes normalized and I was off steroids. However… it's always something. A close read of the clinical trial protocol revealed that my hepatic (liver) enzyme level had gone so high that I was disqualified from continuing in the trial.
This is not all bad news. Obviously, I have had great benefit from the drugs that I have received, getting a "deep" and rapid response, ridding my body of the tumors. Results from earlier clinical trials and other clinical experience suggest that such a response is "durable," and could last for quite some time, perhaps several years. As part of my participation in the trial, I will continue being monitored on a regular basis with physical exams and imaging studies to detect any possible recurrence, and if anything pops up, there are other therapies available.
If nothing else, it will make my upcoming vacation a bit less hectic in that I will not have to interrupt cruising the Bahamas and return to California every two weeks to continue my infusions. So I kind of feel like the baby bird kicked out of the nest -- I'm on my own for a while with no infusions, no weekly labs, no visits with supporting staff every couple of weeks, off traveling out of the country with limited communication.
It will actually feel good to be a bit more "self-reliant" for a while. I don't want to get too dependent on the medical system. I'll keep a realistic perspective, knowing that I may need more therapy and/or treatment in the future, but this incents me to be responsible for my health, to "own" my body, my mind and my emotions, as well as the connection between them.
Although I have continued meditating on a regular basis, it has become more focused on relaxation rather than the more intense healing efforts of a few months ago. I'll have to work on re-establishing the balance, not only in my meditating, but also in my life, that will keep me healthy.
For now, things continue moving in the right direction. I'm feeling stronger, have increasing energy and am having more "good" days than "not as good" days. We're heading back to the boat this week to continue our journey to the Bahamas that was called off a year ago February, and I anticipate more and more good days.
It was a beautiful morning for a run today, and as I was jogging along, enjoying the great weather and scenic trail, I made a resolution which I think will be fairly easy to keep: REALLY, REALLY ENJOY THE GOOD DAYS!!!
I had a PET scan a couple of days before that conversation and it confirmed the findings from my CT scan a week or so ago. The previous tumors appear to have resolved and the only significant findings of "weak-uptake" lesions are, more than likely, areas of resolving inflammation from my immune system attacking the cancer. My liver enzymes, which had elevated recently as a side-effect of the immunotherapy drugs, are responding to the steroid treatment and coming down.
I had thought that the infusions of the investigational drug would restart as my liver enzymes normalized and I was off steroids. However… it's always something. A close read of the clinical trial protocol revealed that my hepatic (liver) enzyme level had gone so high that I was disqualified from continuing in the trial.
This is not all bad news. Obviously, I have had great benefit from the drugs that I have received, getting a "deep" and rapid response, ridding my body of the tumors. Results from earlier clinical trials and other clinical experience suggest that such a response is "durable," and could last for quite some time, perhaps several years. As part of my participation in the trial, I will continue being monitored on a regular basis with physical exams and imaging studies to detect any possible recurrence, and if anything pops up, there are other therapies available.
If nothing else, it will make my upcoming vacation a bit less hectic in that I will not have to interrupt cruising the Bahamas and return to California every two weeks to continue my infusions. So I kind of feel like the baby bird kicked out of the nest -- I'm on my own for a while with no infusions, no weekly labs, no visits with supporting staff every couple of weeks, off traveling out of the country with limited communication.
It will actually feel good to be a bit more "self-reliant" for a while. I don't want to get too dependent on the medical system. I'll keep a realistic perspective, knowing that I may need more therapy and/or treatment in the future, but this incents me to be responsible for my health, to "own" my body, my mind and my emotions, as well as the connection between them.
Although I have continued meditating on a regular basis, it has become more focused on relaxation rather than the more intense healing efforts of a few months ago. I'll have to work on re-establishing the balance, not only in my meditating, but also in my life, that will keep me healthy.
For now, things continue moving in the right direction. I'm feeling stronger, have increasing energy and am having more "good" days than "not as good" days. We're heading back to the boat this week to continue our journey to the Bahamas that was called off a year ago February, and I anticipate more and more good days.
It was a beautiful morning for a run today, and as I was jogging along, enjoying the great weather and scenic trail, I made a resolution which I think will be fairly easy to keep: REALLY, REALLY ENJOY THE GOOD DAYS!!!
Monday, April 7, 2014
LATE TO THE PARTY
As a quick recap, the immunotherapy drugs I am on ramp up my own immune system so it will "eat up" the cancer cells. Well, my immune system ate my tumors for lunch, but apparently were still hungry. They have, since, started nibbling on my liver for dessert. As more and more white blood cells get activated against the cancer, a known side effect is that some activity against my own, normal cells could take place. I received the full four doses of ipilimumab per the protocol, but I responded so thoroughly and quickly that many of the white blood cells got activated as the main party was winding down and headed over to my liver.
Although I had no signs or symptoms of this going on, my lab tests revealed elevated liver enzymes over 10X normal. This is not unheard of, but this side effect showed up a bit late relative to the timing of the infusions. Often, if this is going to happen, it happens after the second or third infusion. This idea of being later than normal is very out of character for me, and there is a history behind this behavior.
My whole life, people compared me to my grandfather. A bit of a free spirit, challenging the status quo at times and very handy and creative with his hands. People said I looked a bit like him, sounded like him and certainly approached life like him. One thing about his behavior stood out very noticeably -- he was always early. If he was to meet someone, he was always at least 15 minutes early. If he was to drive somewhere, he always left early. I remember one morning that he was driving from San Diego to Los Angeles - a couple of hours drive - and he was up at 4:30 AM packing up the car to get an early start. One day he told me the story of why this was so much a part of him.
My grandfather, George, was born in 1888 on the farm in Northern Ireland. He was the first child for his parents (the first of 18!), who lived in a one-room stone cottage with a thatched roof. They did almost everything themselves, but did hire extra hands to help with the harvest. Part of the hired hand's compensation was three meals each day. When George's mother went into labor, the hands were out in the fields, but she had not yet delivered when they were done for the day and showed up for their meal. Of course, they couldn't come into the cottage while she was in labor, so they patiently hung around outside but had to wait until after midnight for George to be born and then get their meal. Every time my grandfather told this story, he ended it with "And that was the last time in my life I was ever late!"
I seem to have inherited this trait, as I am almost always early and want to get an early start on things.
So, with this is mind, we got an early start on treatment of this side effect and pumped in some IV steroids and got started on prednisone to cool things off a bit. This seems to have worked and my enzymes, 5 days later, are on their way down. The second phase of my infusion therapy is delayed a short while, but, the best news, our trip to the Bahamas is still a go! We're scheduled to head back to Florida next week to get the boat ready.
This is a party I won't be late for!
Although I had no signs or symptoms of this going on, my lab tests revealed elevated liver enzymes over 10X normal. This is not unheard of, but this side effect showed up a bit late relative to the timing of the infusions. Often, if this is going to happen, it happens after the second or third infusion. This idea of being later than normal is very out of character for me, and there is a history behind this behavior.
My whole life, people compared me to my grandfather. A bit of a free spirit, challenging the status quo at times and very handy and creative with his hands. People said I looked a bit like him, sounded like him and certainly approached life like him. One thing about his behavior stood out very noticeably -- he was always early. If he was to meet someone, he was always at least 15 minutes early. If he was to drive somewhere, he always left early. I remember one morning that he was driving from San Diego to Los Angeles - a couple of hours drive - and he was up at 4:30 AM packing up the car to get an early start. One day he told me the story of why this was so much a part of him.
My grandfather, George, was born in 1888 on the farm in Northern Ireland. He was the first child for his parents (the first of 18!), who lived in a one-room stone cottage with a thatched roof. They did almost everything themselves, but did hire extra hands to help with the harvest. Part of the hired hand's compensation was three meals each day. When George's mother went into labor, the hands were out in the fields, but she had not yet delivered when they were done for the day and showed up for their meal. Of course, they couldn't come into the cottage while she was in labor, so they patiently hung around outside but had to wait until after midnight for George to be born and then get their meal. Every time my grandfather told this story, he ended it with "And that was the last time in my life I was ever late!"
I seem to have inherited this trait, as I am almost always early and want to get an early start on things.
So, with this is mind, we got an early start on treatment of this side effect and pumped in some IV steroids and got started on prednisone to cool things off a bit. This seems to have worked and my enzymes, 5 days later, are on their way down. The second phase of my infusion therapy is delayed a short while, but, the best news, our trip to the Bahamas is still a go! We're scheduled to head back to Florida next week to get the boat ready.
This is a party I won't be late for!
Sunday, March 30, 2014
ONLY THREE MONTHS
Twelve weeks, IV infusions once every three weeks. That really doesn't seem like a lot of time, nor does it seem like very aggressive therapy. Only four visits to the oncologist's office with a lot of down time in between. Until a few days ago, no imaging studies since December when my lungs were full of tumor and tumors were visualized in my neck and in my leg.
Three months doesn't seem like a lot of time -- in retrospect. During that interval, however, there were some pretty long weeks filled with pain, anxiety, fear, apprehension, exhaustion and lots of hope.
My signs and symptoms from the tumors had abated considerably the last few weeks, but the telling would be in the results of the week 12 CT scan, done a few days ago. In the world of the cancer patient it's termed "scanxiety" -- one's emotional state anticipating the scan and awaiting the results. I was fully prepared to wait until my next doctor's appointment early next week, and was a little surprised to see his phone number on the screen when there was a call the day after the scan. It turned out that he was the one who couldn't wait until next week to tell me the results.
"They can't find any cancer."
Now, of course, this is exactly what I was hoping for, but it had a strangely disquieting effect on me. I should have been jumping for joy, crying with relief, yelling from the rooftops and preparing to go out celebrating. But something just wasn't right. My whole professional life I had been taught, I had seen and had believed the paradigm that Stage 4 melanoma was not a reversible phenomenon. Yet I had just been told that the tumors from what was once an almost invariably fatal condition had disappeared. Yes, it makes sense when one looks at the advances in immunotherapy and knows something about the mechanism of action of these drugs, but it is hard to make sense of it emotionally.
As I was out hiking today, I was ruminating on this. I should be able to accept changing values such as these. In general, I'm in the "early adopter" group for technologic advances, I'm accepting of new and different ideas in art, music, etc. But as I walked, I did recall another situation in my life, a long time ago, when I was thrown off balance as my beliefs were debunked, and I suspect I was not the only one who had this same experience.
Procreation. The Birds and the Bees. We were probably all told some type of fable about where babies came from. And most of us probably believed it, unquestioning. Then the day came when we learned the truth. I may not remember the exact day, but I do remember the exact reaction. I was just old enough, and just educated enough to understand the biological principles, so that was no big deal. But then the realization hit. "NO…WAIT! That can't be right! Not MY Mom! not MY Dad!"
I finally got used to that idea (although I'm not sure MY children have), and we adapt. I've written before about needing to adapt to the "new normal" once cancer is diagnosed. I guess I hadn't realized that the new normal can include such good things as "They can't find any cancer."
The results of this scan are not the last words in the story of my melanoma. I still have much therapy to undergo. I will have more evaluation down the line to assess for any residual cancer. There are still risks of recurrence. But I'm starting to adapt to the concept that all of the tumors are gone. And the best thing I can think of to do in celebration? Just keep breathing, as long as I can.
Three months doesn't seem like a lot of time -- in retrospect. During that interval, however, there were some pretty long weeks filled with pain, anxiety, fear, apprehension, exhaustion and lots of hope.
My signs and symptoms from the tumors had abated considerably the last few weeks, but the telling would be in the results of the week 12 CT scan, done a few days ago. In the world of the cancer patient it's termed "scanxiety" -- one's emotional state anticipating the scan and awaiting the results. I was fully prepared to wait until my next doctor's appointment early next week, and was a little surprised to see his phone number on the screen when there was a call the day after the scan. It turned out that he was the one who couldn't wait until next week to tell me the results.
"They can't find any cancer."
Now, of course, this is exactly what I was hoping for, but it had a strangely disquieting effect on me. I should have been jumping for joy, crying with relief, yelling from the rooftops and preparing to go out celebrating. But something just wasn't right. My whole professional life I had been taught, I had seen and had believed the paradigm that Stage 4 melanoma was not a reversible phenomenon. Yet I had just been told that the tumors from what was once an almost invariably fatal condition had disappeared. Yes, it makes sense when one looks at the advances in immunotherapy and knows something about the mechanism of action of these drugs, but it is hard to make sense of it emotionally.
As I was out hiking today, I was ruminating on this. I should be able to accept changing values such as these. In general, I'm in the "early adopter" group for technologic advances, I'm accepting of new and different ideas in art, music, etc. But as I walked, I did recall another situation in my life, a long time ago, when I was thrown off balance as my beliefs were debunked, and I suspect I was not the only one who had this same experience.
Procreation. The Birds and the Bees. We were probably all told some type of fable about where babies came from. And most of us probably believed it, unquestioning. Then the day came when we learned the truth. I may not remember the exact day, but I do remember the exact reaction. I was just old enough, and just educated enough to understand the biological principles, so that was no big deal. But then the realization hit. "NO…WAIT! That can't be right! Not MY Mom! not MY Dad!"
I finally got used to that idea (although I'm not sure MY children have), and we adapt. I've written before about needing to adapt to the "new normal" once cancer is diagnosed. I guess I hadn't realized that the new normal can include such good things as "They can't find any cancer."
The results of this scan are not the last words in the story of my melanoma. I still have much therapy to undergo. I will have more evaluation down the line to assess for any residual cancer. There are still risks of recurrence. But I'm starting to adapt to the concept that all of the tumors are gone. And the best thing I can think of to do in celebration? Just keep breathing, as long as I can.
Thursday, March 27, 2014
A HOLE IN MY SOCK
So I noticed a hole in my sock this morning. Now, to most people, that's not much of a life event, but to me -- well, it's pretty damn significant. Allow me to explain:
Slightly over a year ago I learned the results of a biopsy from a mass in my parotid (salivary) gland. We were visiting in Portland for a few days when this occurred and the news was a pretty shocking blow, as one may understand. It's bad enough to have any melanoma in your body, but we didn't know if this discovery represented a single, isolated tumor or if it was just the tip of the iceberg with more tumor already present elsewhere, typical for melanoma. Prognosis and possible treatment depended on the results, then, of a pending whole-body CT scan and PET scan to assess for metastatic disease.
Emotionally at this time, I was wallowing. In the course of a few days I had gone from getting back onto our boat and continuing our dream cruise to the Bahamas to absolute uncertainty for my future. This uncertainty was so profound I found it difficult to concentrate and almost impossible to focus my thoughts toward any rational resolution of the situation.
Since I had to stay in Portland for the imaging studies, I took Elaine to the airport so she could get back to the boat in Florida, get some important papers and set the boat up for a longer absence than we had initially planned. We were only going to be gone four days when we left Florida, so I packed pretty lightly. It had been so warm I had been wearing sandals most of the time, but at the last minute I threw in one pair of socks since it was winter and we were heading to the Pacific Northwet. After dropping Elaine off, I headed to a shopping mall to buy another pair of socks as I had been wearing my one pair since we had arrived. It was then that I became aware that I was in even worse emotional shape than I first thought. It had been bad enough to get the news of the cancer, but now I was without Elaine, who was more of a support than I had realized.
I walked into a store, looking to buy one pair of athletic socks, but felt like a little kid walking into a shop of horrors. I was surrounded by sporting goods and athletic equipment -- things that I would normally be interested in -- but they just reminded me that I might not live long enough to ever use anything like that again. And the socks! They only came in packages of 12! Why the hell should I buy 12 pair of socks when I might be full of cancer and not live long enough to even wear out the one pair I currently owned? Totally defeated, I left the sore empty-handed.
Fast-forward a few days. Elaine had returned, I had my CT/PET scan and we were awaiting the results. We were distracting ourselves by going to movies. After parking the rental car, and as we were walking toward the theater, my phone rang -- it was the surgeon with the results of the scans. The scans had shown no other evidence of disease. At least now we would be able to develop a strategy to attack this tumor, a strategy that would be consistent with living longer.
My first words to Elaine after getting the results? "Now I can go buy those socks!"
I did go buy the socks -- all 12 pair -- and, although the treatment strategy has taken a few twists and turns, I'm still kickin'. And my feet are covered with the socks that are now starting to wear out!
Slightly over a year ago I learned the results of a biopsy from a mass in my parotid (salivary) gland. We were visiting in Portland for a few days when this occurred and the news was a pretty shocking blow, as one may understand. It's bad enough to have any melanoma in your body, but we didn't know if this discovery represented a single, isolated tumor or if it was just the tip of the iceberg with more tumor already present elsewhere, typical for melanoma. Prognosis and possible treatment depended on the results, then, of a pending whole-body CT scan and PET scan to assess for metastatic disease.
Emotionally at this time, I was wallowing. In the course of a few days I had gone from getting back onto our boat and continuing our dream cruise to the Bahamas to absolute uncertainty for my future. This uncertainty was so profound I found it difficult to concentrate and almost impossible to focus my thoughts toward any rational resolution of the situation.
Since I had to stay in Portland for the imaging studies, I took Elaine to the airport so she could get back to the boat in Florida, get some important papers and set the boat up for a longer absence than we had initially planned. We were only going to be gone four days when we left Florida, so I packed pretty lightly. It had been so warm I had been wearing sandals most of the time, but at the last minute I threw in one pair of socks since it was winter and we were heading to the Pacific Northwet. After dropping Elaine off, I headed to a shopping mall to buy another pair of socks as I had been wearing my one pair since we had arrived. It was then that I became aware that I was in even worse emotional shape than I first thought. It had been bad enough to get the news of the cancer, but now I was without Elaine, who was more of a support than I had realized.
I walked into a store, looking to buy one pair of athletic socks, but felt like a little kid walking into a shop of horrors. I was surrounded by sporting goods and athletic equipment -- things that I would normally be interested in -- but they just reminded me that I might not live long enough to ever use anything like that again. And the socks! They only came in packages of 12! Why the hell should I buy 12 pair of socks when I might be full of cancer and not live long enough to even wear out the one pair I currently owned? Totally defeated, I left the sore empty-handed.
Fast-forward a few days. Elaine had returned, I had my CT/PET scan and we were awaiting the results. We were distracting ourselves by going to movies. After parking the rental car, and as we were walking toward the theater, my phone rang -- it was the surgeon with the results of the scans. The scans had shown no other evidence of disease. At least now we would be able to develop a strategy to attack this tumor, a strategy that would be consistent with living longer.
My first words to Elaine after getting the results? "Now I can go buy those socks!"
I did go buy the socks -- all 12 pair -- and, although the treatment strategy has taken a few twists and turns, I'm still kickin'. And my feet are covered with the socks that are now starting to wear out!
Saturday, March 22, 2014
STATISTICALLY SPEAKING...
Quantitative results of in-depth analysis should be a good thing, one would think.
As a practicing physician I made many, many decisions in the care of patients, and a surprising number of those decisions did not have rigorous scientific studies backing them up. They may have been based on personal experience, accumulated opinions of experts or even some clinical data that suggested a certain procedure, or a specific drug, would provide the anticipated clinical outcome. That's the way a lot of medical decisions are made, although more and more effort is going into measuring and consolidating the clinical evidence in validated research settings to allow true evidence-based decisions.
As a scientist, well, valid analysis of experimental findings is everything. I recall as a graduate student way too many nights in the library poring over recently published scientific papers and dissecting the methods, the results, the analysis and the conclusions of the authors. It was a star in your cap at Journal Club if you found errors in either the selection or the execution of the statistical analysis. Their statistics approach could mean the difference between good research with a valid conclusion or a "filler" paper meant to pad the author's Curriculum Vitae.
In both the clinical and scientific research arenas one is striving for decision-making support and hoping that the authors of the studies were true adherents of scientific methods and principles. However… it's not always that way when statistics are involved. Although true attribution is vague, Mark Twain popularized the phrase "There are three types of falsehoods; lies, damed lies and statistics."
There were many instances in those research papers in which the authors were using their data to tell their story and therefore presented the numbers in a manner that supported their position. Similar numerical obfuscation abounds in both marketing and politics. Numbers presented supporting a particular point of view are to be suspect in proportionality to the vested interests of the presenters.
This brings me to my point - cancer patients should not read statistical analyses of outcome data for their cancer. This is an incredibly difficult thing to avoid. When one is first diagnosed with cancer it is natural to research every possible presentation on the subject. Many options abound - from true scientific literature to hucksters on the internet - and all are backed by numbers. Five-year survival rates, regression percentages, response fractions, dose-response curves, etc. etc. If you are a cancer patient, ignore them! They are not the truth you are looking for! They do not mean that if you do this, the results will, inevitably, be that. The scientific data are meant to nudge progress over time and support clinical decisions of the treatment providers. The marketing data of the hucksters are meant to separate you from your money. No one can tell you the odds of your responding to medication, or even of your own survival with accuracy any more than they can predict the March Madness outcomes.
This sentiment comes after reading a recent paper on the outcomes of the investigational drug I am (likely) being given. The paper hailed the fantastic outcomes of previous clinical studies with this drug and touted it as THE new therapeutic option for those with advanced melanoma. This all sounds good - until you get down to the final numbers. The statistical improvement in survival was about 20 months. Twenty month survival was not the conclusion I was looking for, but that's what I came away with. Now I could parse their conclusions and re-run all the numbers, but I suspect they did a good job and my quantitative analysis would come out the same as theirs. However, the study had a number of variables -- response rates, dosage differences, prior treatments, etc. that contributed to an aggregate 20 month enhancement of survival. I know, intellectually, that this doesn't mean that I only have 20 months to live but, emotionally, it is difficult to ignore that bottom line number.
But I can ignore it, and ignore their statistical analysis, and say that in my experience with this drug, I am 100% alive!
As a practicing physician I made many, many decisions in the care of patients, and a surprising number of those decisions did not have rigorous scientific studies backing them up. They may have been based on personal experience, accumulated opinions of experts or even some clinical data that suggested a certain procedure, or a specific drug, would provide the anticipated clinical outcome. That's the way a lot of medical decisions are made, although more and more effort is going into measuring and consolidating the clinical evidence in validated research settings to allow true evidence-based decisions.
As a scientist, well, valid analysis of experimental findings is everything. I recall as a graduate student way too many nights in the library poring over recently published scientific papers and dissecting the methods, the results, the analysis and the conclusions of the authors. It was a star in your cap at Journal Club if you found errors in either the selection or the execution of the statistical analysis. Their statistics approach could mean the difference between good research with a valid conclusion or a "filler" paper meant to pad the author's Curriculum Vitae.
In both the clinical and scientific research arenas one is striving for decision-making support and hoping that the authors of the studies were true adherents of scientific methods and principles. However… it's not always that way when statistics are involved. Although true attribution is vague, Mark Twain popularized the phrase "There are three types of falsehoods; lies, damed lies and statistics."
There were many instances in those research papers in which the authors were using their data to tell their story and therefore presented the numbers in a manner that supported their position. Similar numerical obfuscation abounds in both marketing and politics. Numbers presented supporting a particular point of view are to be suspect in proportionality to the vested interests of the presenters.
This brings me to my point - cancer patients should not read statistical analyses of outcome data for their cancer. This is an incredibly difficult thing to avoid. When one is first diagnosed with cancer it is natural to research every possible presentation on the subject. Many options abound - from true scientific literature to hucksters on the internet - and all are backed by numbers. Five-year survival rates, regression percentages, response fractions, dose-response curves, etc. etc. If you are a cancer patient, ignore them! They are not the truth you are looking for! They do not mean that if you do this, the results will, inevitably, be that. The scientific data are meant to nudge progress over time and support clinical decisions of the treatment providers. The marketing data of the hucksters are meant to separate you from your money. No one can tell you the odds of your responding to medication, or even of your own survival with accuracy any more than they can predict the March Madness outcomes.
This sentiment comes after reading a recent paper on the outcomes of the investigational drug I am (likely) being given. The paper hailed the fantastic outcomes of previous clinical studies with this drug and touted it as THE new therapeutic option for those with advanced melanoma. This all sounds good - until you get down to the final numbers. The statistical improvement in survival was about 20 months. Twenty month survival was not the conclusion I was looking for, but that's what I came away with. Now I could parse their conclusions and re-run all the numbers, but I suspect they did a good job and my quantitative analysis would come out the same as theirs. However, the study had a number of variables -- response rates, dosage differences, prior treatments, etc. that contributed to an aggregate 20 month enhancement of survival. I know, intellectually, that this doesn't mean that I only have 20 months to live but, emotionally, it is difficult to ignore that bottom line number.
But I can ignore it, and ignore their statistical analysis, and say that in my experience with this drug, I am 100% alive!
Wednesday, March 12, 2014
WHAT GOES AROUND...
I had my fourth infusion this week. Prior to getting the meds I always have a visit with the oncologist involved in this clinical trial to review how everything has been going. All my labs are checked, we review any side effects, he does a physical exam and we talk about what's up next. It was during this last part that my oncologist said, in a nonchalant manner, "We're going to save your life, and get this drug approved."
Now, I know that these drugs are extending my life and I'm pretty excited about that. In my conversations with the oncologist I don't hold back about how pleased I am that I'm responding to these drugs. It just kind of took me by surprise that to him, saving my life seemed so matter-of-fact.
It got me to thinking about my clinical career. I spent about 25 years practicing medicine and, as an anesthesiologist, saved many lives. Although I don't think I was nonchalant about it, it also didn't seem to be terribly extraordinary. I did what I was trained to do, I did what I had anticipated doing when I initially went into medicine. Although it had an incredibly profound effect on the patient, to me, it was just part of what I did as a physician. Not to say that it wasn't rewarding to see positive clinical outcomes in challenging situations, but I didn't usually think of it as a cause for celebration -- but in retrospect, I suspect the patients and their families did.
The concept of karma as a principle of causality is a central motif of most Asian religions. In these religions, good intent and good deeds in the present tend to affect what will happen to you in the future part of your life as well as in future lives. These religions teach that like deeds lead to like effects - kind of like a codified Golden Rule, or "you reap what you sow," although it goes beyond just behavior to include attitude, desires and intent that direct any behaviors. In this way, these religions encourage one to lead an ethical existence and to seek to live a moral life.
I can't say I've lead a perfect existence, but a driving factor for what I have done throughout my life has been putting myself in a position to help others. This value culminated in my going into clinical medicine as a career. Although there are semantic subtleties between a job and a profession, my "job" as a physician was to help others. Perhaps, since medicine is a profession, it would be more correct to say that I saw my role in society as one who helps people maintain, or improve, their health. Since staying alive improves health, I helped people stay alive.
Even though I have acknowledged the concept of karma for decades, I never really thought, at the time, that what I was doing was accruing "karmic capital," but, perhaps, that is why I am now having my life saved.
Now, I know that these drugs are extending my life and I'm pretty excited about that. In my conversations with the oncologist I don't hold back about how pleased I am that I'm responding to these drugs. It just kind of took me by surprise that to him, saving my life seemed so matter-of-fact.
It got me to thinking about my clinical career. I spent about 25 years practicing medicine and, as an anesthesiologist, saved many lives. Although I don't think I was nonchalant about it, it also didn't seem to be terribly extraordinary. I did what I was trained to do, I did what I had anticipated doing when I initially went into medicine. Although it had an incredibly profound effect on the patient, to me, it was just part of what I did as a physician. Not to say that it wasn't rewarding to see positive clinical outcomes in challenging situations, but I didn't usually think of it as a cause for celebration -- but in retrospect, I suspect the patients and their families did.
The concept of karma as a principle of causality is a central motif of most Asian religions. In these religions, good intent and good deeds in the present tend to affect what will happen to you in the future part of your life as well as in future lives. These religions teach that like deeds lead to like effects - kind of like a codified Golden Rule, or "you reap what you sow," although it goes beyond just behavior to include attitude, desires and intent that direct any behaviors. In this way, these religions encourage one to lead an ethical existence and to seek to live a moral life.
I can't say I've lead a perfect existence, but a driving factor for what I have done throughout my life has been putting myself in a position to help others. This value culminated in my going into clinical medicine as a career. Although there are semantic subtleties between a job and a profession, my "job" as a physician was to help others. Perhaps, since medicine is a profession, it would be more correct to say that I saw my role in society as one who helps people maintain, or improve, their health. Since staying alive improves health, I helped people stay alive.
Even though I have acknowledged the concept of karma for decades, I never really thought, at the time, that what I was doing was accruing "karmic capital," but, perhaps, that is why I am now having my life saved.
We drive into the future using only our rear-view mirror -- Marshal McLuhan
Subscribe to:
Posts (Atom)