I'm afraid I need to correct my earlier calculation of how much leukemia my most recent biopsy turned up. I had said that one test found 1% XY chromosomes, and another test had found 2% leukemia. Those were the test results, but my assumption that it was 2% of the 1% (which would be .02%) was incorrect.
The real story is that one test counted 3 cells with XY chromosomes out of 400 counted, which rounded up to 1%. The other test counted 6 cells (also out of 400) with the deletion-7 genetic marker that my leukemia cells have been helpful enough to wear. So that's 1.5%, rounded up to 2%. If they counted another 400, they might find 5, or 3, or 7. It means that, at the time of my biopsy, there were a few of my own cells still in the mix, and they appear to be all leukemic.
The corrected calculation doesn't change anything. I had more leukemia left than I thought, but it's still a small amount and not out of the ordinary. The rest of my blood counts are solid, indicating that what leukemia is still there isn't causing any trouble. "It's nothing to lose sleep over," says my doctor. Of course, leukemia has a way of getting out of hand, so it's also nothing to ignore.
Another biopsy this Friday will tell us whether going off of the immunosuppressant medication has had the desired effect of routing the remaining XY cells, and with them the remaining leukemia. If not, there are other treatments to try.
I assume the current treatment will do the job, even though I know it's not guaranteed. There's no benefit to fretting about what might go wrong, if you can't do anything about it. People who dwell on possible future suffering suffer more than they need to — guaranteed anguish before anything happens, and then again if it does happen. Once is enough, if it comes to that.
I also believe it's medically harmful to worry about all the things that could go wrong, and medically helpful to believe in your treatment. Hope is good medicine. It won't beat leukemia on its own, but it helps.
Sunday, July 17, 2011
Monday, July 11, 2011
And No Snoopy Bandage :-(
Today is my first doctor visit since going off my immunosuppressant drug. I haven't had any symptoms such as rashes or intestinal distress that would indicate that my new and now unfettered immune system is attacking anything it shouldn't, so that's good. Meanwhile, I hope Immunity 2.0 is quietly and thoroughly tracking down the lingering traces of leukemia, but we won't get that report until after a bone marrow biopsy in a couple of weeks.
At tomorrow's appointment, I begin my re-inoculation. My new immune system has not been exposed to those childhood diseases I either had as a kid or was vaccinated against: measles, mumps, chicken pox, and a few other reasons we got to stay home from school for a few days. I'm not sure what the schedule is, but it's a lot of shots over the next several months. Some have to be repeated. And, at my age, they don't put a cute bandage on your owwie or offer a lollipop.
Jan and I went on another "long run" yesterday. After the usual 10-minute warm-up walk, the jog-(walk) intervals were: 1 (1) 1 (1) 2 (1) 2 (1) 3 (1) 3 (1) 3 (3) 3 (1) 3 (2) 3 (1) 2 (1) 2 (1) 1 (1) 1 (some). A total of 30 minutes of jogging, matching my PTPR.
I hadn't been planning to have a 2-minute break after the fifth 3-minute jog, but I needed it. On a couple of the longer intervals, I achieved muscle failure in my lower legs. Most marathoners have experienced this feeling in a race or two, when they start doing the "death march." The foot can no longer push off, and the thighs can barely lift, so even though you are willing your legs forward, you are just lifting your feet and then putting them down again a few inches ahead of where they left the ground. You tell yourself that you're still running, but you're not. You're doddering. You could walk faster, but you're too proud to walk, so you keep taking these tiny steps on appendages that look like legs but feel like loaves of french bread. Stale loaves.
I am familiar with this sensation, from a few marathons, but also from some shorter races, and even from some workouts. Some call it rigor mortis, or carrying the piano. It's a common sight at track meets.
I got some satisfaction running into it in workouts, like repeat 200s. It meant I was running as fast as I possibly could at that point in time, and even though my legs were failing me at the moment, I knew they would take the hint and be a little stronger in a few days.
Being familiar with dead legs on a run does not mean I'm happy about it. Intellectually, I know I'm doing the same thing I did 30 years ago — I'm running up to my limit, recovering, repeating. And, like 30 years ago, I take rest days between hard workouts. Except now a rest day means just walking, instead of an easy 5-mile run.
It's still hard to fully accept that I can reach muscle failure while moving as slowly as I am.
I also wish I were seeing more of a training effect. A few weeks ago, I did a pyramid workout with a 5-minute jog in the middle, and that was hard but possible. But I have had trouble making it to 4 minutes ever since. And I'm pretty sure I'm not running any faster, based on my GPS gadget.
On the positive side, I did modify a training plan last week (when I could not finish a 4-minute jog interval) to include a set of 1-minute "sprints," and those felt great. I was actually, finally, running.
At tomorrow's appointment, I begin my re-inoculation. My new immune system has not been exposed to those childhood diseases I either had as a kid or was vaccinated against: measles, mumps, chicken pox, and a few other reasons we got to stay home from school for a few days. I'm not sure what the schedule is, but it's a lot of shots over the next several months. Some have to be repeated. And, at my age, they don't put a cute bandage on your owwie or offer a lollipop.
Jan and I went on another "long run" yesterday. After the usual 10-minute warm-up walk, the jog-(walk) intervals were: 1 (1) 1 (1) 2 (1) 2 (1) 3 (1) 3 (1) 3 (3) 3 (1) 3 (2) 3 (1) 2 (1) 2 (1) 1 (1) 1 (some). A total of 30 minutes of jogging, matching my PTPR.
I hadn't been planning to have a 2-minute break after the fifth 3-minute jog, but I needed it. On a couple of the longer intervals, I achieved muscle failure in my lower legs. Most marathoners have experienced this feeling in a race or two, when they start doing the "death march." The foot can no longer push off, and the thighs can barely lift, so even though you are willing your legs forward, you are just lifting your feet and then putting them down again a few inches ahead of where they left the ground. You tell yourself that you're still running, but you're not. You're doddering. You could walk faster, but you're too proud to walk, so you keep taking these tiny steps on appendages that look like legs but feel like loaves of french bread. Stale loaves.
I am familiar with this sensation, from a few marathons, but also from some shorter races, and even from some workouts. Some call it rigor mortis, or carrying the piano. It's a common sight at track meets.
I got some satisfaction running into it in workouts, like repeat 200s. It meant I was running as fast as I possibly could at that point in time, and even though my legs were failing me at the moment, I knew they would take the hint and be a little stronger in a few days.
Being familiar with dead legs on a run does not mean I'm happy about it. Intellectually, I know I'm doing the same thing I did 30 years ago — I'm running up to my limit, recovering, repeating. And, like 30 years ago, I take rest days between hard workouts. Except now a rest day means just walking, instead of an easy 5-mile run.
It's still hard to fully accept that I can reach muscle failure while moving as slowly as I am.
I also wish I were seeing more of a training effect. A few weeks ago, I did a pyramid workout with a 5-minute jog in the middle, and that was hard but possible. But I have had trouble making it to 4 minutes ever since. And I'm pretty sure I'm not running any faster, based on my GPS gadget.
On the positive side, I did modify a training plan last week (when I could not finish a 4-minute jog interval) to include a set of 1-minute "sprints," and those felt great. I was actually, finally, running.
Saturday, July 2, 2011
Unleash the Hounds! (D+120)
According to the protocol I'm following, patients start tapering their immunosuppresant drug 120 days after transplant. This drug has kept my new immune system from being fully functional, until now. A fully functional but grafted immune system, while useful for fending off bacteria, viruses, and fungi, could also mistake the host's liver or intestinal lining or skin as an enemy, leading to graft-vs-host disease. So far, luckily, I have had no GVHD symptoms.
I don't know what's different after 120 days. Maybe everyone has had enough time to get to know each other, or at least not go around picking unnecessary intercellular fights.
I am not quite following the protocol.
I had my D+100 biopsy on D+109. The initial results were as good as they could be. "Zillions and zillions of cells," to use my doctor's technical term. My next biopsy would be in several months (D+180). Having had the biopsy, I was able to start the transition from an injectable blood thinner to an oral one. (I have been on the injectable thinner since my pulmonary embolism, because it has a short half life and clears the system in a day. Blood thinners and bone marrow biopsies do not go together, and coumadin takes about a week to clear the system.)
On D+118, my doctor called with more bone marrow biopsy results, based on chromosomal analysis, and they are not as good as they can be. We would like to see none of my cells in the marrow, but 1% are mine, which we know because they have the XY chromosome. Worse, 2% of that 1% (0.02%) are leukemic. It's not enough to cause mischief, but it's the first evidence that we didn't get it all.
Fortunately, I now have a powerful weapon in this battle that I did not have in January: an immune system that should treat the native 1% as hostile threats. (Historically speaking, the 99% are the newcomers, but now they act like they own the place. This behavior should be familiar to students of U.S. history.) Starting two days ago, I am no longer taking the drug that kept my new immune system from attacking enemy cells. Over the next few weeks, the recently unleashed cells carrying the XX flag should be hunting down every blood cell foolish enough to wave the XY flag. While graft-vs-host disease is a problem, the related graft-vs-leukemia effect is beneficial.
Later this month, I'll have another biopsy to see how well the extermination campaign is going. Sadly, there is no special reward for filling my biopsy punch card. The last time, Jan bought me a pastry.
I don't know what's different after 120 days. Maybe everyone has had enough time to get to know each other, or at least not go around picking unnecessary intercellular fights.
I am not quite following the protocol.
I had my D+100 biopsy on D+109. The initial results were as good as they could be. "Zillions and zillions of cells," to use my doctor's technical term. My next biopsy would be in several months (D+180). Having had the biopsy, I was able to start the transition from an injectable blood thinner to an oral one. (I have been on the injectable thinner since my pulmonary embolism, because it has a short half life and clears the system in a day. Blood thinners and bone marrow biopsies do not go together, and coumadin takes about a week to clear the system.)
On D+118, my doctor called with more bone marrow biopsy results, based on chromosomal analysis, and they are not as good as they can be. We would like to see none of my cells in the marrow, but 1% are mine, which we know because they have the XY chromosome. Worse, 2% of that 1% (0.02%) are leukemic. It's not enough to cause mischief, but it's the first evidence that we didn't get it all.
Fortunately, I now have a powerful weapon in this battle that I did not have in January: an immune system that should treat the native 1% as hostile threats. (Historically speaking, the 99% are the newcomers, but now they act like they own the place. This behavior should be familiar to students of U.S. history.) Starting two days ago, I am no longer taking the drug that kept my new immune system from attacking enemy cells. Over the next few weeks, the recently unleashed cells carrying the XX flag should be hunting down every blood cell foolish enough to wave the XY flag. While graft-vs-host disease is a problem, the related graft-vs-leukemia effect is beneficial.
Later this month, I'll have another biopsy to see how well the extermination campaign is going. Sadly, there is no special reward for filling my biopsy punch card. The last time, Jan bought me a pastry.
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