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Wow!
Marlene's got a great list going there. I second all of that, and also Karen's advice not to underestimate the hematologist. I have three: my local heme, a university-based doc, and a researcher at NIH. They are all extremely interested in understanding what's going on with their patients.
And all three, I have found, really value a patient that is interested in understanding the details of their disease.
For a local heme, those kinds of patients might be 20 or 30% of the total. The rest just want the doc to fix them. So the docs can get a little lulled into complacency. But, if you express a strong interest in understanding the details of what's going on, I bet you'll get a great response. If not, you should find another doc.
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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