On Monday the 19th of October I paid a visit to my oncologist, Dr. Howard Schlossberg. Before seeing him, I rolled up my sleeve to have more blood drawn, and marveled at two things: (1) the amazing "instant blood test machine," that looks like a slightly enlarged laser printer (put the blood vial in, press the button, and--pow---instant count of white blood cells, red blood cells, and even the kind of white blood cells) and (2) that the highly trained, competent nurses and technicians who draw blood, feed the machine, and even administer the chemo treatments sometimes feel compelled to take second jobs in order to pay their bills. Somehow, that does not seem right.
Enough of that.
Anyway, the results of the blood test are remarkable, although hinting of issues to come. My white blood cell count, which had gone from 6,000 (approx.) before this CLL became an issue, and had begun doubling to 16K to 32K to 69K to 77K. has now plummeted back to 4.1K.
Hey, that sounds pretty darned good. In coarse terms, it means I have less pus running through my blood. And my lymph nodes have shrunk remarkably. You can see it at a glance. And I feel so much more zip, more vitality. Maybe even starting to sleep better.
But---here is that word again---there are several kinds of white blood cells. One is called a neutrophil and the army of neutrophils in one's blood are the ones that fight infection. The new blood test shows my neutrophil level is now below "normal" ranges. That is a definite "uh-oh." It means vulnerability to everybody else's germs, and especially to pneumonia.
Taken together with the observation that a small "cold sore," more accurately called Herpes simplex, has emerged at the corner of my mouth, and maybe (not sharply clear) the increase in late afternoon pain in my back where I had a shingles (Herpes zoster--which almost all of us got as chicken pox as kids) outbreak in late 2007. I have been taking Acyclovir as a preventive measure for the two Herpes possibilities, but, hmmm, maybe inadequate.
There are no surprises in all this (except maybe the nurses taking waitress jobs). All of it was laid out as possibilities from the beginning.
No complaints; I am on the road to lasting remission. I just have to make sure I manage the process carefully.
Tuesday, October 20, 2009
Tuesday, October 13, 2009
One Week Later
It seems hard to believe that one week ago, at this moment, I was headed to Riverview Oncology and Hematology in Rexford, N.Y., to begin my first round of chemotherapy. It seems like forever-ago.
A lot has happened in that week. I finished listening to a book on tape: "The Life of Pi." Very strange, mildly thought-provoking book, and nothing to do with 3.14. I have gotten half way through "Common Sense" (surprisingly dull) and "The Rights of Man" (archaic language but overflowing with logic, meaning, and relevance) by Thomas Paine. The Red Sox got blown away by the Anaheim Angels. Obama was awarded the Nobel Peace Prize. Lots of neighbors have so-very-kindly dropped off various home-cooked meals. What great neighbors we have. How lucky we are to have landed in this spot.
For the most part, "so far, so good." On Thursday, the day after the third round of chemo, I felt remarkably good. The swelling in my face had been reduced noticeably, although two big lymph nodes under my chin are still much too big. Friday I felt a bit queasy and headachey, but Saturday, Sunday, and Monday (yesterday), I felt pretty good, enough to take two modestly long (but easy) walks in the newly found Wolf Creek Falls Preserve, about seven miles up the road.
I can't say I am sleeping significantly better. I thought at first I was improving---maybe---in that regard, but I am not thinking that now. Those big nodes in the neck have to shrink more before that can happen, I think.
The most annoying part? Drinking all this water that I am supposed to drink. I keep working at it, and maybe it will become habit. I am told it is important, but it seems like it has to be an unrelenting obsession for me to consume three quarts a day.
So, that's the news for now. Time to go do some office work. Deadlines await.
A lot has happened in that week. I finished listening to a book on tape: "The Life of Pi." Very strange, mildly thought-provoking book, and nothing to do with 3.14. I have gotten half way through "Common Sense" (surprisingly dull) and "The Rights of Man" (archaic language but overflowing with logic, meaning, and relevance) by Thomas Paine. The Red Sox got blown away by the Anaheim Angels. Obama was awarded the Nobel Peace Prize. Lots of neighbors have so-very-kindly dropped off various home-cooked meals. What great neighbors we have. How lucky we are to have landed in this spot.
For the most part, "so far, so good." On Thursday, the day after the third round of chemo, I felt remarkably good. The swelling in my face had been reduced noticeably, although two big lymph nodes under my chin are still much too big. Friday I felt a bit queasy and headachey, but Saturday, Sunday, and Monday (yesterday), I felt pretty good, enough to take two modestly long (but easy) walks in the newly found Wolf Creek Falls Preserve, about seven miles up the road.
I can't say I am sleeping significantly better. I thought at first I was improving---maybe---in that regard, but I am not thinking that now. Those big nodes in the neck have to shrink more before that can happen, I think.
The most annoying part? Drinking all this water that I am supposed to drink. I keep working at it, and maybe it will become habit. I am told it is important, but it seems like it has to be an unrelenting obsession for me to consume three quarts a day.
So, that's the news for now. Time to go do some office work. Deadlines await.
Thursday, October 8, 2009
Why choose what I chose?
There is a daily "list-serv" for folks with CLL, and I have learned a lot from it. So I thought it only fair to post my own experience and observations.
A couple people wrote to me to ask (as I had asked of others), "How did you think-through it all to this decision?"
Here is what I wrote back:
"A very hard decision, indeed. And I asked lots of people whose opinions and analytical skills I had come to trust the very same question. It's a bet, not a sure thing.
For me, it had come down to FCR, FCR Lite, or just R.
Actually, the folks at Mayo Clinic (Dr. Tim Call, who I think is wonderful) I went to see for a second opinion back in May of 2008 recommended PCR. It substitutes Pentostatin for the Fludarabine. But in comparative tests, the PCR, (the Mayo prescription) didn't do quite as well as the FCR (the prescription favored by Keating, Wierda, et al at M.D. Anderson Center in Houston)
I asked Chaya Venkat (who has written extensively about FCR Lite at her amazing Web site at http://www.clltopics.org/) if she could discern any reliable, predictable circumstances under which FCR Lite was a more appropriate choice. She said, in short, "No." The facts are these: It does hammer the immune system less, but it also requires "topping up" with Rituxan periodically forever and the tests were done on a relatively small population and not very long ago, meaning it doesn't have the track record that FCR does.
I wrote to Dr. Terry Hamblin (one of the top CLL experts in the world, in England)---with some guilt, given his own cancer---and posed the same question as I did to Chaya Venkat. I asked if he had done a pros /cons appraisal of FCR versus FCR Lite. He quickly wrote back to say "no, but I am considering it."
I came across some correspondence with Dr. Keating---clearly on the all-star team of CLL experts--- who said that one's reaction to the immune-suppression of FCR is likely based, more than anything else, on the condition of one's immune system before undergoing treatment. And mine has been quite good. I am fortunate in that I have kept myself in resonably good athletic condition over the years, not a tri-athlete, but O.K.
I wrote to Wayne Wells, a fellow patient, one whose writing and analytical skills are sharp and clear. He had just made his own decision and to see his face back in April, you'd know why. He had golf ball lumps all over his neck and cheeks. Very serious. It was Wayne who pointed out to me the short track record of FCR Lite, and I immediately saw the truth in it when I dug to verify it. For him, getting his first treatments by an "ace" was important, so he opted for the long-day's drive from rural, western NY to Columbus, Ohio, and Dr. John Byrd, where they went with a sequential, rather than simultaneous infusion. Wayne's own unique symptoms seemed to call for that, and unfortunately he has had some kidney issues as a result. Latest word: he's doing O.K.
About Rituxan alone: My appraisal, after long hours of study, is that (1) the first blast is the most important and (2) every time you use it, its power diminishes. I met a guy at the CLL Conference in Niagara Falls, back in May, who had just completed his 54th round of Rituxan over the years. I think it is the only medicine he has ever taken for CLL (maybe dietary supplements). He is a diehard road-bike cyclist (the Lance Armstrong sort) and in otherwise good shape, but one could see in his neck and face that he had CLL, and he acknowledged that every time his biking performance was declining, he knew it was time for more Rituxan. He was fervently hoping for Humax to be approved as a replacement for the Rituxan. Long story, but I could not hold him up as a "poster boy" for continued reliance on Riutuxan-alone over the long term, especially compared to other available options.
In short, I guess I evaluated them all much as I might comparative investments in this crazy economy. Downplay the short term performance, look at the real fundamentals, look at my OWN circumstances, and try to predict the long term outlook for the dollar. Add 'em up, recognize that there is no perfect decison---only good ones (and probably more than one good one)---and place your bet.
My decision was complicated by the cloud of H1N1 Flu hanging over us all at this moment. Unfortunately, my symptoms gathered steam now. I could not procrastinate any longer, hoping green tea extract would keep it all at bay until the flu season subsided. It had to be now. So I basically announced to my employer that I would have to work from home via computer for the next few months, in a sort of self-imposed quarantine. He thought I was over-reacting, I think, but said O.K. Yesterday, 25% of the staff was out sick. I think I got that call right.
Since posting my brief decision for all to see, I was contacted by a very kind lady who said she made the same decision I did. She said she has been in complete remission for eight years. One experience such as hers does not make a trend, but it sure was nice to read. Eight years would get me to 71---a far better outlook than where I was last week.
Alan
A couple people wrote to me to ask (as I had asked of others), "How did you think-through it all to this decision?"
Here is what I wrote back:
"A very hard decision, indeed. And I asked lots of people whose opinions and analytical skills I had come to trust the very same question. It's a bet, not a sure thing.
For me, it had come down to FCR, FCR Lite, or just R.
Actually, the folks at Mayo Clinic (Dr. Tim Call, who I think is wonderful) I went to see for a second opinion back in May of 2008 recommended PCR. It substitutes Pentostatin for the Fludarabine. But in comparative tests, the PCR, (the Mayo prescription) didn't do quite as well as the FCR (the prescription favored by Keating, Wierda, et al at M.D. Anderson Center in Houston)
I asked Chaya Venkat (who has written extensively about FCR Lite at her amazing Web site at http://www.clltopics.org/) if she could discern any reliable, predictable circumstances under which FCR Lite was a more appropriate choice. She said, in short, "No." The facts are these: It does hammer the immune system less, but it also requires "topping up" with Rituxan periodically forever and the tests were done on a relatively small population and not very long ago, meaning it doesn't have the track record that FCR does.
I wrote to Dr. Terry Hamblin (one of the top CLL experts in the world, in England)---with some guilt, given his own cancer---and posed the same question as I did to Chaya Venkat. I asked if he had done a pros /cons appraisal of FCR versus FCR Lite. He quickly wrote back to say "no, but I am considering it."
I came across some correspondence with Dr. Keating---clearly on the all-star team of CLL experts--- who said that one's reaction to the immune-suppression of FCR is likely based, more than anything else, on the condition of one's immune system before undergoing treatment. And mine has been quite good. I am fortunate in that I have kept myself in resonably good athletic condition over the years, not a tri-athlete, but O.K.
I wrote to Wayne Wells, a fellow patient, one whose writing and analytical skills are sharp and clear. He had just made his own decision and to see his face back in April, you'd know why. He had golf ball lumps all over his neck and cheeks. Very serious. It was Wayne who pointed out to me the short track record of FCR Lite, and I immediately saw the truth in it when I dug to verify it. For him, getting his first treatments by an "ace" was important, so he opted for the long-day's drive from rural, western NY to Columbus, Ohio, and Dr. John Byrd, where they went with a sequential, rather than simultaneous infusion. Wayne's own unique symptoms seemed to call for that, and unfortunately he has had some kidney issues as a result. Latest word: he's doing O.K.
About Rituxan alone: My appraisal, after long hours of study, is that (1) the first blast is the most important and (2) every time you use it, its power diminishes. I met a guy at the CLL Conference in Niagara Falls, back in May, who had just completed his 54th round of Rituxan over the years. I think it is the only medicine he has ever taken for CLL (maybe dietary supplements). He is a diehard road-bike cyclist (the Lance Armstrong sort) and in otherwise good shape, but one could see in his neck and face that he had CLL, and he acknowledged that every time his biking performance was declining, he knew it was time for more Rituxan. He was fervently hoping for Humax to be approved as a replacement for the Rituxan. Long story, but I could not hold him up as a "poster boy" for continued reliance on Riutuxan-alone over the long term, especially compared to other available options.
In short, I guess I evaluated them all much as I might comparative investments in this crazy economy. Downplay the short term performance, look at the real fundamentals, look at my OWN circumstances, and try to predict the long term outlook for the dollar. Add 'em up, recognize that there is no perfect decison---only good ones (and probably more than one good one)---and place your bet.
My decision was complicated by the cloud of H1N1 Flu hanging over us all at this moment. Unfortunately, my symptoms gathered steam now. I could not procrastinate any longer, hoping green tea extract would keep it all at bay until the flu season subsided. It had to be now. So I basically announced to my employer that I would have to work from home via computer for the next few months, in a sort of self-imposed quarantine. He thought I was over-reacting, I think, but said O.K. Yesterday, 25% of the staff was out sick. I think I got that call right.
Since posting my brief decision for all to see, I was contacted by a very kind lady who said she made the same decision I did. She said she has been in complete remission for eight years. One experience such as hers does not make a trend, but it sure was nice to read. Eight years would get me to 71---a far better outlook than where I was last week.
Alan
Round 1 Ends
Each round or “cycle” of chemo is a three-day affair. Day 1 wasn’t horrible, although it didn’t start all that well.
Except for sore bronchial tubes and lungs overnight from Day1, almost certainly from throwing up during that first infusion of Rituxan, Day 2 was uneventful. I felt nothing unusual during the Day 2 infusion of steroids, Fludarabine, and Cytoxin. In fact, on the way home, I was feeling so good I decided to go for a bike ride when I got home. It was a 6o-degree and sunny day and I didn’t want to waste it. There might not be many left this fall.
I rode six miles and felt good. The combination of cool air and exercise seemed to flush out my windpipes and they’ve been feeling good all day.
Today I started taking Acyclovir, an anti-viral intended to keep the shingles (Herpes Zoster, the lingering virus in anyone who has had chicken pox) at bay. I also started taking Bactrim tablets as a precaution against pneumonia, the ultimate threat for anyone with CLL and who further intentionally impairs his immune system with chemotherapy.
Then it was off to Day 3 of chemo infusions. Again, no problems. And there was one very amazing bit of news. A blood test prior to the infusion showed that the first two days of chemotherapy had cut my worrisome white blood cell count from 77,000 to 6,000---practically normal! And there is no doubt: A look in the mirror shows that the lymph nodes are shrinking. You can actually see it.
Now, that is good news, exciting news, even. But it must be tempered with the knowledge that there are more potential hurdles to pass. Among them: sharply plummeting neutrophil count. Neutrophils are a kind of white blood cell that does the immune system work. If the count gets too low---as it well could---then counter measures are taken. Then there is the possibility of what is called “tumor lysis,” which means the kidneys aren’t handling the heavy traffic of dead white blood cell counts. So---the road ahead is still a bumpy one. But then, I have always found dirt roads irrestistible.
Twenty-eight days until Round 2.
Except for sore bronchial tubes and lungs overnight from Day1, almost certainly from throwing up during that first infusion of Rituxan, Day 2 was uneventful. I felt nothing unusual during the Day 2 infusion of steroids, Fludarabine, and Cytoxin. In fact, on the way home, I was feeling so good I decided to go for a bike ride when I got home. It was a 6o-degree and sunny day and I didn’t want to waste it. There might not be many left this fall.
I rode six miles and felt good. The combination of cool air and exercise seemed to flush out my windpipes and they’ve been feeling good all day.
Today I started taking Acyclovir, an anti-viral intended to keep the shingles (Herpes Zoster, the lingering virus in anyone who has had chicken pox) at bay. I also started taking Bactrim tablets as a precaution against pneumonia, the ultimate threat for anyone with CLL and who further intentionally impairs his immune system with chemotherapy.
Then it was off to Day 3 of chemo infusions. Again, no problems. And there was one very amazing bit of news. A blood test prior to the infusion showed that the first two days of chemotherapy had cut my worrisome white blood cell count from 77,000 to 6,000---practically normal! And there is no doubt: A look in the mirror shows that the lymph nodes are shrinking. You can actually see it.
Now, that is good news, exciting news, even. But it must be tempered with the knowledge that there are more potential hurdles to pass. Among them: sharply plummeting neutrophil count. Neutrophils are a kind of white blood cell that does the immune system work. If the count gets too low---as it well could---then counter measures are taken. Then there is the possibility of what is called “tumor lysis,” which means the kidneys aren’t handling the heavy traffic of dead white blood cell counts. So---the road ahead is still a bumpy one. But then, I have always found dirt roads irrestistible.
Twenty-eight days until Round 2.
Tuesday, October 6, 2009
Chemo, Day 1
Well, "day 1" is now in the books. Off we went with bags full of "toys:" books, books on tape, Ipod, plus a blanket, since they warned that I might get chills.
Two days ago I started taking a daily allopurinol tablet. It is supposed be like a turbocharger for your kidneys and help them handle all the white blood cells that have been bulking-up my lymph nodes that are expected to come---now quite dead---pouring through the kidneys in the next couple days and weeks ahead.
First came two Tylenol tablets as a guard against fever spikes. Then they stuck the IV needle into my lower arm, and opened the faucet. First came Benedryl to guard against allergic reactions. Then they started some other preliminary stuff (I forget just what at the moment, but I know it was intended to"smooth the way" for what was to follow---Rituxan,) Rituxan is a "monoclonal antibody" made in part from mouse cells (no, I don't want to know the detail of how, either). But you can imagine that human bodies tend to reject that stuff.
Less than ten minutes into it, I did. I barfed up breakfast and V8 juice---more than you wanted to know---and then settled down to twenty minutes of chills, declining oxygen levels, and rising temperature. All pretty typical, they tell me; just quicker in my case.
The rest of the day was surprisingly uneventful, as they opened the spigots on Fludarabine and Cyclophosphamide, the ones that are really considered more damagaing to one's immune system and render one's head quite bald. I wasn't done until 4:30, after starting at 8:30. Long day.
The nurses said I might experience fever in the night, but I didn't.
The only weird "hangover" is that my lungs hurt a bit when I inhale. At about 2:00 a.m. I strapped on my "Top Gun" fighter pilot's air mask for my CPAP machine (which I do many nights to try to sleep), and by 4:00 a.m. my lungs felt not right. Some combination of that air pressure, the treatments, and/or maybe the throwing-up affected my lungs. I could see where V8 going down the wrong pipe could do that to you.
Today should be a lot easier: in by 2:00 and out by 4:00, and no Rituxan. Same thing tomorrow, then 28 days "off."
So, there you have it. So far, so good. Not fun, but odds are that the end result will put me in a better situation than I have been just lately. I hope these lungs clear up quickly.
You know what the toughest part has been? Water. "Drink more water, drink more water," Nancy keeps saying, quoting all the advisory sheets. I know she is right, but how do people do that and get anything else done? Three quarts a day? Geesh, there is no room left for food. I keep trying!
Thanks for all the kind words of support and encouragement. I hear them and appreciate them.
Two days ago I started taking a daily allopurinol tablet. It is supposed be like a turbocharger for your kidneys and help them handle all the white blood cells that have been bulking-up my lymph nodes that are expected to come---now quite dead---pouring through the kidneys in the next couple days and weeks ahead.
First came two Tylenol tablets as a guard against fever spikes. Then they stuck the IV needle into my lower arm, and opened the faucet. First came Benedryl to guard against allergic reactions. Then they started some other preliminary stuff (I forget just what at the moment, but I know it was intended to"smooth the way" for what was to follow---Rituxan,) Rituxan is a "monoclonal antibody" made in part from mouse cells (no, I don't want to know the detail of how, either). But you can imagine that human bodies tend to reject that stuff.
Less than ten minutes into it, I did. I barfed up breakfast and V8 juice---more than you wanted to know---and then settled down to twenty minutes of chills, declining oxygen levels, and rising temperature. All pretty typical, they tell me; just quicker in my case.
The rest of the day was surprisingly uneventful, as they opened the spigots on Fludarabine and Cyclophosphamide, the ones that are really considered more damagaing to one's immune system and render one's head quite bald. I wasn't done until 4:30, after starting at 8:30. Long day.
The nurses said I might experience fever in the night, but I didn't.
The only weird "hangover" is that my lungs hurt a bit when I inhale. At about 2:00 a.m. I strapped on my "Top Gun" fighter pilot's air mask for my CPAP machine (which I do many nights to try to sleep), and by 4:00 a.m. my lungs felt not right. Some combination of that air pressure, the treatments, and/or maybe the throwing-up affected my lungs. I could see where V8 going down the wrong pipe could do that to you.
Today should be a lot easier: in by 2:00 and out by 4:00, and no Rituxan. Same thing tomorrow, then 28 days "off."
So, there you have it. So far, so good. Not fun, but odds are that the end result will put me in a better situation than I have been just lately. I hope these lungs clear up quickly.
You know what the toughest part has been? Water. "Drink more water, drink more water," Nancy keeps saying, quoting all the advisory sheets. I know she is right, but how do people do that and get anything else done? Three quarts a day? Geesh, there is no room left for food. I keep trying!
Thanks for all the kind words of support and encouragement. I hear them and appreciate them.
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