[GaryV]

Hi,

I don't want to come across negative, but I have some serious decisions to make.

My bone marrow has had 0% cellularity for over 4 years. My spleen is large against my pelvis. For months my HGB (7.3) and PLT (11) consistently have been critically low. Very occassional bleeding, except for everyday spotting. The only drug therapy I have been on has been Aranesp, which stopped working. I am transfusion dependent. RBC every 6-12 days; PLT becoming more frequent. They don't give much boost and the boost doesn't last long. I am not eligible for BMT.

As is, prognosis seems to be about a year (please no pep talks that no one really knows; I know, but it is a reasonable ballpark figure; I am not marking the calendar!)

My excellent hematologist recommends Dacogen if I were to go on drug therapy. My question is why would I want to do drug therapy?

1) Hypomethylating agents like Dacogen have side effects of anemia and lowering platelets. I am already critically low on both counts. I am already transfusion dependent and drug therapy will increase transfusion dependence, at least initially, with a hope that I will be free of transfusions for awhile in the future.

2) These drug therapies do not increase length of life (some evidence, not certain, they may increase life for 2 months or so).

3) Drug treatment side effects will reduce my quality of life for the time I do have remaining.

4) It will take 4 - 8 cycles (months) to know whether I get a boost.

5) Only about 50% of patients do get a boost and then for only a few months.

If my information is correct, I ask, what am I grasping for? Why go through the side effects and hassle of an intense regimen of cycles? There is no long term gain. Short term gain is a toss of a coin.

I will refrain from saying what I really think. I know many of you choose drug therapies and hold out hope. Some of you have had actual short-term benefit that made it all worthwhile. I wish you well.

I have excellent health coverage and live near my clinic. Another factor weighing on me, which is not directly related to my asking about the case for drug therapy, is that I am alone and must act as my own health advocate. I must do all the research of options, nudge my doctors to give useful, even if unhappy, information, and I must fight the bureuacracies. I am so fatigued it all seems like a battle.

There is dignity in death. I am at peace with it, but do not wish to bring it upon myself. Yet, why pretend to prolong the inevitable?

I seek your thoughts about my choices, all of them unhappy choices.

GaryV