Sunday, May 23, 2010

An update

Two months after the cessation of hostilities (against my CLL cells and with collateral damage to my gut), I seem to be doing about the same, which is feeling pretty good. I am back to work full-time (although I really only took two days off a week while doing the treatment), and cleaning up loose ends. It is a task made more difficult with having supervisors who are much more focussed on their own situation, ensuring that work flow continues unabated by anything foolish such as illness. And by supervisors who cannot let work go out, but are intent on sending work back again and again until it is not only polished, but fairly sparkles. And that is for the most routine of tasks, such as letters to incarcerated folks looking for someone to talk to (men get this task, for we have had a number of cases where these men, who are so hungry for interaction with women, that they become letter-writing pests).

On the other hand, my CLL continues to inhabit my body. I did not expect a complete remission from flavopiridol (Alvocidib). Virtually no one gets one; I think only one person in the entire history of clinical trials using the agent has achieved even a complete remission, let alone a molecular one. So it's a partial remission I've received. And that's just fine. With a response rate of only 50%, it's fortunate that I responded at all.

One excellent feature of flavopiridol is that when relapse comes (an average of 12 months over-all, and 9.4 months for 11q del folks such as myself), the regime almost always works just as effectively the second time around.

This leads me to conclude that perhaps our two-faced friend might be used effectively as a maintenance drug. I like to think of one dose a month being enough to keep CLL at bay for a long period of time. But no one is testing that treatment regime, which I think is unfortunate. Really, really unfortunate.

And my partial response may not be a terribly solid one. My counts improved nicely over the last two months, and my hemoglobin and platelet counts are near-normal. For that, I thank God.

On the other hand, my white count, after improving each week, has now tanked for whatever reason. I've not needed a Neulasta shot for the two months, but I am now skirting along near the magic 500 number. If my neutrophils drop below 500, I will have to get a shot. Not good.

What could be causing this? The worst possibility is that the idiotic decision I made two years ago to take FCR has ruined my marrow, and given me myelodysplastic syndrome (MDS) a terrible new chromosomal insult resulting from the combination of fludarabine and cyclophosphamide.

MDS is becoming more and more common, as a result of chemotherapy such as FCR. MDS is where CLL was 15 years ago; few treatments available, and none of them effective at all. Survival estimates range from a few months to a few years.

Funny MD Anderson never warns you of the possibility of a fatal complication from using their beloved FCR. It may be unfair, but it seems that certain docs there love FCR, dole it out like candy, and just brush away concerns from patients like so much dirt under a rug. Gotta push the drugs!

MDS usually appears as anemia, and then progresses to take out all lines of the myeloid precursors, resulting in neutropenia (what I have) and thrombocytopenia, in addition to anemia.

I didn't get more than four months remission from the FCR. Definitely not worth the potential price.

There are other possibilities to be considered with neutropenia after FCR. One could be acute myeloid leukemia, a very nasty leukemia (especially in folks who acquire it secondarily to chemotherapy), or something called chronic myelomonocytic leukemia (CMML). Or perhaps aplastic anemia (AA). (The NIH says of the latter, "Secondary aplastic anemia may be an unavoidable consequence of treatments such as chemotherapy.) Nice. Only in CLL it is now not necessary to have chemotherapy.

Or it could just be a benign problem. Some people never recover neutrophils after FCR. Meaning that they stay on growth factors such as Neulasta for as long as they a-last-a (sorry). That is a remote possibility, but it is a possibility.

I had a bone marrow biopsy (my 15th, for those keeping track). Dr. Kipps is worried enough about MDS that he is running a special test looking for tell-tale signs of the disease. He wasn't particularly worried about it before, since it turns out that flavopiridol can lower neutrophil counts (which I didn't think happened).

So, as usual with CLL, I just have to wait for the results. I am praying for the best, hoping for the best, preparing for the worst.

What a penalty for making the mistake of using the FCR candy. Death. Not good. When will MD Anderson learn that there are much better options than that? Ever? They developed it, I guess, so they want to use it, over and over again. I guess it's the 'invented here' mindset.


Arnold said...

isn't lenalidomide effective against MDS?

And could you describe what are the tell-tale signs of MDS that Dr. Kipps is looking for?

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