Hey Linda!
Hey Linda!
Sorry to hear about Al's low platelets. Reading about the experience of other folks, I really feel lucky that my main problem is with my red cells instead of the whites or platelets. All my counts are below normal, but I'm not in the real danger zone, so I haven't (knock on wood) had infection or bleeding problems.
I read about one guy on another forum, 32 years old, as I recall, who walked into the hospital because he was feeling run down. The doc gave him two choices: We check you in now, or you can go home for the night and come back to start chemo in the morning. This poor guy is lying around in the hospital for four weeks doing chemo while they look for a BM donor match. I feel really fortunate reading about a story like that. I'm not real anxious to do a transplant just yet and am looking instead at a clinical trial that seems to fit my disease profile. But I've got a transplant doc and they've found three unrelated donor matches for me in the registry, so there's a bit of back-up insurance comfort in that.
I'm a real egghead, so the key for me has been learning everything I can about the disease. But that would probably just depress some folks. Of course, I have to turn it off too occasionally, forget about it, and go back to life as normal.
Is Al eligible for a transplant? If you're at Emory, I'll bet you've got some mighty fine docs looking after him.
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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