Thread: Danielle S.
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Old Fri Dec 3, 2010, 12:46 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Danielle!

The folks at Cleveland Clinic are definitely amongst the best in the business, so, if you don't like what you hear from your first transplant hospital, you can always think of them for back up. Sorry the webcasts didn't work for you.

There is so much to learn about this disease that I am constantly being surprised by every piece of info I get. It seems like it's different for everyone.

I have only gotten reports on my blast count and cytogenetics when I have a bone marrow biopsy. If you all haven't had one in a while, the transplant hospital may want to do one to see what's what. That will give you more information to use in making your decision about what therapy to pursue.

Every transplant center has a little different take on things. The folks at Johns Hopkins, for example, have been pretty aggressive about pushing the edge of the envelope. For example, they sometimes do transplants on siblings that are just a half-match. So I wouldn't worry too much about the nine out of ten thing until you've talked with the transplant center.

Ditto on finding a matched unrelated donor. Some folks have a really hard time, but my transplant center found three ten-point matches in a week. It all depends on the individual. So there's really no way to know how hard it will be until they start the search.

I think it's really important to find a transplant center you feel comfortable with, assuming your health care coverage gives you the flexibility to shop around a little.

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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