Thread: Nutritionist?
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  #13  
Old Mon Oct 3, 2016, 03:16 PM
Bananamoore Bananamoore is offline
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Join Date: Jun 2016
Location: Chicago
Posts: 15
Marlene, yes, I think we need to talk to her doctor again with research in hand. I've done a few google searches with lots of info, but is there a 'definitive' study that goes down well with doctors?
I don't know if they ever tested her donated blood for cmv negative. Is this something that we should find out about? Her blood is leukoreduced and irradiated as well.
At this point she is getting transfusions every 3-4 weeks if one unit, 4-5 weeks if two units; I think that 6.5 is too low of a threshold, but she's worried she's getting them too frequently, although I'm more worried about her heart when it goes so low.
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Anna, daughter of Raisa age 63; dx MDS 5q- Jan 2013; receiving transfusions, no other treatment, white and platelets stable but Hg dropping; p53 mutation; started taking Revlimid Jan 2017 5mg every other day, Hg went up but since June 2018 has been steadily decreasing
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