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Old Sat Jan 29, 2011, 03:58 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
NIH Campath Trial Follow-Up Week 9

I'm writing this from a room at my local hospital, where I'm getting two units of red blood cells. I'd rather be out in the nice temporarily warm weather today, but I can't complain too much, since this marks a three-week interval between transfusions -- much better than my recent track record.

My hemoglobin on Tuesday was 7.9 -- just one point below my transfusion trigger -- so that's also not too bad.

My retic count dropped from 135.8 -- well above normal -- to 107.7 -- still well within the high side of normal. Dr. Olnes at NIH tells me it's pretty normal to see a bit of up and down in these counts.

My Neutrophils hit 1,700, so I am pretty darned close to no longer being neutropenic, depending on who's scale you use. This means I no longer need to take cipro. I've been fortunate not to have a lot of the bad gastric side effects of that antibiotic, but my stomach will nonetheless be glad to be done with it.

Lymphocytes are at 200 -- consistent with recent results.

Platelets are up a little more -- to 80,000. That's the best number since October.

The only negative I have to report is that I came down with a head cold yesterday. It's more annoying than painful, but I'll probably check with my docs to make sure I don't need to anything special -- other than suffer through it like usual.

Next Tuesday is my three-month follow-up at NIH. So far, things appear to be going according to plan. My neutrophils and platelets are recovering, I've sprouted a decent reticulocyte number, and I'm needing less frequent red blood cell transfusions. It will be interesting to see what the folks at NIH have to say about how my case fits into the success criteria of the trial.
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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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