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Old Tue Jul 20, 2021, 12:54 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Hi Matthew,

Blood counts will fluctuate so try not to put too much emphasis on each CBC. SAA is a disease of patience and waiting. John's was never on a steady upward trend. He would have dips and then two week later a jump. But overall the trend was upward. It drives you crazy though watching it all play out.

I would put more weight on the absolute count of the white cells instead of percentages alone to try and make sense of things. We were told that you want to see the neutrophil % higher than the Lymph %. But we mostly tracked the absolute numbers.

Regarding red cells...Look at the Reticulocyte, both absolute and %. This can give you a indication if she's making new red cells. In the past, there have been discussions on the age of the transfused cells and the thinking being that red cell that are expiring soon, don't last as long. Whether or not that plays a role in this is unclear. If she's getting two units per transfusion, of course that would last longer than if she just got one.

Also, any infection/fever can drive counts down but that doesn't mean the treatment did not work. They usually bounce back. It may take a while though.

Hopefully others who have had AGT will chime in since our experience was with HiCY. It may be a bit different.

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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