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Old Fri Aug 5, 2011, 02:41 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Janice!

Sorry . . . my intent wasn't to slander your docs, I was thinking not of your specific case so much as the general state of things. Docs are all different (like people) -- some more anxious to get moving on a therapy; some more apt to move with a degree of caution. We're kind of culturally programmed (at least in the US) to want a cure, right now, and sometimes docs get infected with that mania.

Your ranges are pretty much the same as the ones I'm used to -- so it looks like you may have more of a WBC and Platelet problem than an RBC problem. It's great that they haven't caused you much trouble.

I participated in a conference call on MDS with Dr. Yee; she was great! Very knowledgeable and able to talk about MDS in language a layperson could understand.

Work and insurance are indeed big factors in my decision-making about transplant right now. But, frankly, even if I were a billionaire, I wouldn't do transplant at this stage in my disease. The risk profile just doesn't cut it for me. And, when I say risk profile, I'm not just thinking about risk of death. I'm instead thinking about the quality of life issues -- that is, coming out sicker on a day-to-day basis than you went in.

But, for some folks, the strain of knowing you are living with an incurable disease that can get nasty fast -- that is a quality of life issue. Everyone's different in terms of what makes sense for them.

Most folks who have transplants don't have much of a choice; the disease forces your hand at some point. I fully expect to get there. But getting there while I'm still a lower risk MDS-er doesn't make sense from where I am sitting.

Take care -- and have a great weekend!

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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