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Old Sat Jun 16, 2012, 09:42 AM
Mary4Mike Mary4Mike is offline
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Join Date: Oct 2010
Location: Michigan
Posts: 68
Thanks for responding, Marlene. Mike's FE was over 6000 one year prior to transplant and was put on Exjade. That brought it down, but we switched over to desferral because of the cost and safety issues. At transplant he was over 2000. In January this year, he was at 1200 with a HGB of 18.8. Feb - 1144 - HGB 17.8, April - 1023 - HGB 16.8, May - 1132 - HGB 16.7, June - 1205 - HGB 16.8. He did 500 ml every 4 weeks for the last 3 months. As you can see, his HGB stabilized, but his FE is creeping up. We will see the transplant doc in July and get her take on this. All in all, he feels wonderful. They were actually a bit concerned about his HGB being so high, because it was trending upward at each visit. They did a BMB to check for fibrosis, but everything came back normal. We asked the Florida doc at what point would she stop the phlebotomies and she said when he was below 50. The transplant doctor said when it gets around 500. I guess we will have to see. Again, thanks for responding.
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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