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Hi All!
Like most everyone else who has commented, I get two units if I dip below 8.0, which reliably happens every other week, at this point. On the rare occasions when I've dipped below 6.5 (usually the result of delaying transfusion because of an overly-optimistic CBC) I wind up getting three units.
There's always an expiration date on my units (along with a lot of other relevant info), but never anything about volume, which seems odd to me.
I have considered suggesting 9.0 as the cost rather than 8.0, just because it would likely improve my energy levels, but will likely wait on that until I see if I'm accepted in NIH's Danazol trial and that helps me reduce my transfusion interval.
I've had 55 units and am not currently doing anything for chelation. After I get a ferritin reading at NIH in a couple of weeks, I plan to try wheatgrass again to see if I can lower my iron without resorting to Exjade. I want to wait for the ferritin reading so I have a benchmark against which to measure progress.
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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