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Hey Freedom!
I have to say, LynnI makes some very good points. I don't know that we've heard much about your hematologist, so he/she may be an MDS specialist, but, if not, I agree that it's critical to go and find one.
I have three docs currently treating my MDS: my local hematologist, who has to keep up not only with MDS but all the other bone marrow diseases; my transplant doc, who's part of a university-based team with lots and lots of experience in both drug and transplant treatment for MDS; and my doc at the National Institutes of Health, a specialist in MDS and immunology, who's running the clinical trial I'm in.
They all have their strengths and weaknesses, but I wouldn't want to rely on my local doc alone, as good as he is, and he's very good. In such a rare disease, a specialist is essential. If you've got one, great. If not, I'd go find one.
I participated in a conference call with Dr. Yee from Princess Margaret. She seemed very knowledgeable and patient-focused.
Take care!
Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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