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Old Mon Aug 25, 2014, 09:25 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
There's something happening here. What it is ain't exactly clear.

I'm writing this from a hotel a couple of blocks from the NIH campus in Bethesda, MD.

I'm back at NIH three months early for a bone marrow biopsy and some bloodwork. What won me the invitation for an early visit is avery gradual but persistent slide in hemoglobin levels since I stopped taking Danazol, culminating in an 8.8 on August 4.



That low reading may have been some sort of anomaly, since a second CBC a week later produced a friendlier 9.9. On the other hand, during the week prior to that 8.8, I had experienced many of the telltale signs of low HGB. I had blood pounding (or squishing) in my ears at night, I was sensitive to cold (in very hot summer weather), and fatigue had reached the point that I actually took a couple of brief afternoon naps. As I told my local oncology nurse, I felt "ragged."

I had, the week prior, packed up my younger daughter's second floor New York apartment, loaded it into a UHaul, drove it North Carolina, and unloaded it. It don't know that you can burn red blood cells, but, if that's possible, I had definitely lit the match to a bunch of them.

After I posted the 8.8, I fully expected that the CBC a week later would land me in the transfusion chair. But that was not the case, and I no longer have the blood pounding in my ears, nor am I in need of a nap in the middle of the afternoon.

I do, however, seem to be tiring more quickly than normal from strenuous physical activity, like brush cutting and other yard work.

So, I expect I will not be posting an 8.8 tomorrow, but I would be surprised if my HGB is an 11.

I glad to be having the biopsy, because I am just a interested as my NIH friends in understanding whether anything untoward is going on in my bone marrow.

I'll report back on what we find.

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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