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Hi Bob,
I would recommend seeing Dr. Paquette at UCLA. He is excellent and is an expert in bone marrow failure diseases (not just MDS). His consult rate is $335/hour (not including labs). Just be organized and bring copies of all previous labs and biopies with you. He will even review your mother's BMB slides, which is extremely beneficial.
I'm not sure that he would classify your mother's disease as MDS. It may be more of a drug induced Aplastic Anemia. I was told (by him) that in the absense of increased blasts or chromosomal abnormalities, *significant* dysplasia is needed for a diagnosis of MDS - not just mild dysplasia. Mild dysplasia can be seen with aplastic anemia.
If that is the case, perhaps your mother will respond to a course of Cyclosporine vs Vidaza.
My worst nemesis is also low platelets. A year ago they were under 10k, and now they are in the 60k's thanks to immune suppressant therapy.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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