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Dan, I have read your post and the others which have given you excellent advice. I know very little about the substance of the decisions you are facing. But one thing I have learned in trying to get a diagnosis for Bruce's bone marrow disorder (still not conclusive) is that there is no substitute for an MDS Specialist for your second or third opinion.
Based on our personal experience, I think the suggestion that you contact a MDS expert is an excellent one.
We have a local hematologist and initially went to a big city University Medical Center hematologist (who is a bone cancer specialist but not a MDS Specialist).
After a long wait, we finally were able to see an MDS Specialist at UCLA, and he actually recommended a less aggressive course of treatment than the other hematologists. Consulting a doctor who had done clinical trials in the field was a revelation. After 2 months of naysaying by our local hematologist, the treatment appears to be helping.
Keep us posted.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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