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Old Sat Jun 16, 2012, 08:53 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
What we found is that after about three months of doing 450 ml, his bone marrow couldn't produce enough red cells fast enough to make up for the loss. But John's bone marrow was hypo because of the SAA. I think he will always have some level of hypo especially since his HGB still remains in the 12's and platelets stay below 100K.

And yes, 250ml every other month is painfully slow. It's been 8 years since he's been transfusion free and John has done everything you can to get the iron off but he could never tolerate full doses of the drugs because of side effects either.

How high is his FE and what was it when he started phlebotomies. When John's FE was over 1500, the FE would bounce around a lot and at time seemed to remain static. It wasn't until he got close to 1000 that you actually saw it stabilize. Inflammation will mess with the FE readings and high iron causes inflammation.

So what is Mike's HGB now. If it's normal, then you can try 500 ml. If he's able to make it back by the next phlebotomy three or four months in row, then you are probably ok. You just have to keep an eye on it. If not back off to find the right amount. Maybe 500 ml every six weeks or every other month may work.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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