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redslw,
Some folks do get pretty upset when they find out they have MDS -- most folks, probably. And some get fatalistic.
And some who haven't spent much time dealing with doctors figure that one is as good as another. That is really not true with MDS, which is a very rare disease. Many community hematologists treat very few MDS patients, so they know the basic strategies, but aren't as well educated about the latest and greatest. You brother's doc might be fantastic; it's hard to know.
So, it's really important to get a consult with an MDS expert. Johns Hopkins is great, NIH is great (and free, if you qualify for a clinical trial), Sekeres at Cleveland Clinic is great.
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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