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Old Fri Oct 29, 2010, 12:04 AM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Ah, make that a Thanksgiving Present?

Hey Guys!

Thanks for all the good wishes. Looks like this whole thing may happen a month earlier than I was expecting. Some department in NIH that is essential to my scheduled departure is actually closed on Christmas Eve, so we're now looking at doing this in a couple of weeks. I'd be done on Black Friday.

Birgitta, the Principal Investigator for this study told me they have some folks who were among their very first Campath patients who remain transfusion independent. So I am hopeful that we will get a durable result.

Neil, one of the less happy details I discovered about the trial during my screening appointment is that it -- like seemingly every other drug they give you for MDS -- tends to depress counts at first. The PI seemed to think I might have an increase RBC transfusion frequency for the first month or six weeks and might even need a couple of platelet transfusions. But their experience has been that the counts bounce back pretty fast.

As far as topping up beforehand, that's one of the questions I have on my list to email to the nurse coordinator in the morning. I should be just about ready for an RBC transfusion by mid-November -- unless my recent luck holds and my Hg falls more slowly than is typical.

Thanks again for the encouragement. I'll keep you posted.

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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