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Old Mon Sep 6, 2010, 08:15 AM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Low platelets

Hi Julie,
Low platelets is really more complicated to treat than low HGB and low WBCs. I have pancytopenia (all counts low) and can get blood transfusions for the low HGB and Neupogen for the low WBCs. The low platelets can be treated with platelet transfusions but we often develope antibodies against platelets so we have to have platelet transfusions from special donors.

There are 2 new drugs for patients with the bleeding disease Immune Thrombocytopenic Purpura. The first approved drug - Nplate - was early in trials for MDS patients and showed increased blast cells in 8 of 44 patients (most patients improved when the drug was stopped).

The second drug that I hoped should be better is Promacta. In test tubes that drug has inhibited leukemic cells. As far as I know 2 members of this forum has tried Promacta. The first patient - Kirby - has had a good response but developed AML after some months. Perhaps he should have done that without Promacta too. The other member developed leukemia within a month and that makes me afraid of Promacta - perhaps it is just as dangerous as Nplate. I have not yet seen any result from studies with Promacta on MDS patients though there are several ongoing trials.

My dysfunctional platelets were as low as 22 last spring. Then I got Thalidomide for my fibrotic bone marrow and my platelets are now between 55 and 64 - the best results i have had since 2007.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low WBCs, Thalidomide and Prednosone for bone marrow fibrosis
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