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Old Tue Nov 8, 2011, 08:31 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Hi Christine,

Your son's situation is certainly complicated. Predicting anything with these diseases is really just a guess. Our doctor told us that what's important is peripheral blood counts. Like you already stated, somehow, the marrow can maintain almost normal counts even with low cellularity. And then there's the opposite, where some have pretty decent cellularity but their CBC is not.

When John went through treatment, we were told that most cannot survive beyond six months without a white count. At that time, John had no white cells and he was on multiple anti-biotic, anti-fungal and anti-virals. When his white cell started to produce again, they didn't come up to normal for very long time. He did fine with an ANC of .7 - 1 for a good year and a half. In fact, once his ANC got to .350, they started pulling the drugs.

With red cells, it's not as critical. John was dependent for two years on red cells. Of course you then have to deal with iron overload. But there are those who do fine for 10+ years getting red cell transfusions when only red cells are affected.

Platelets...you'd be surprised how well you can do with low platelets. Part depends on how well your platelets function. John was able to stop platelet transfusions once his platelets stabilized at 8K. He was transfusion dependent for 20 months and then it was slow climb.

There are so many variable, especially in your son's case.

Hope this helps.
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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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