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Old Mon May 9, 2016, 01:02 PM
kyis kyis is offline
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Join Date: Jun 2013
Location: Marin, California
Posts: 56
I can't agree with everyone more.
I put off transfusions for quite a while and can feel it right away when I drop into the 7's. I've only had 3 so far. Wanted them so I wouldn't stress my heart out anymore. Low hgb can also make your body receptacle to other problems, infections etc. so best keep your strength up.
Blast count is very important. I watched my go up for 8 years, thought it was kind of holding steady at 8-10% then it jumped to 14% so I jumped on Vidaza to get me ready for transplant.
I've watched my ferriten and Erythropoietin rise. Your Erythropoietin can compensate for a while to generate more red stuff. Mine was 62 In 2012 and was 2262 a in Feb. probably about the time my my hgb started dropping.
Getting transfusions is no big deal for me and is giving me quality of life for sure. There are lots of variables and everyone is pretty different.
If you had a marrow biopsy good know what your celluarity is also.
Get that second opinion and you must have had a bmb. Good Luck. I have to run to my Vidaza shot. On a side note I'm starting to wonder if transfused would be better than abusing my stomach fat. 3 shots every day for 5 days. Running out of real estate there. Good Luck. There are some very knowledgeable people on this site to help and everything I read on this string sounds like good advice.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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