Hi V: My hema doc has ordered no transfusion if my Hgb is over 90g/L; 1 between 80 to 90; 2 between 70 to 80; 3 under 70. Since I've had so many PRBCs, there is a slight overlap because I have to be cross and typed tested two days before transfusion and my Hgb drops about one point a day.
I use Exjade to maintain serum ferritin level around 1000. I have to keep track of my Creatinine level since Exjade does increase that as a side effect. I do have to take a break from Exjade once or twice a year, usually for a month or so.
I can tell when I'm down around 70g/L mainly by SOB. The lowest level was 39 and that's when we agreed that I needed testing every three weeks. So far, so good.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%
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47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).