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Vidaza disaster
Hi Deb:
Did those idiots send him home with those counts? This is a serious emergency! Get your Dad to an ER at once and get him a tx w/leukocyte reduced and irradiated PRBC. Don't let them tell you it "isn't necessary" or "not indicated" to use treated blood. Stand your ground and demand it. That's what I had to do when my counts crashed and I ended up in the ER at midnight w/Hgb 5.0 and a super jerk ER doc. I won't repeat the language I had to use to get my point across, but I can report that every bag of PRBC I ever received was treated. With tx and EPO+G-CSF your Dad might be able to carry on to try a different drug. Could there be something else in his dx that made them give up on him? (Aside from stupidity.)
I didn't notice your location ... a listmate in your area may have some good advice for finding a hem/onc with MDS experience. Were you able to follow-up on Ruth's comment about going to a center of excellence, or at least trying a phone consultation if they are too far away? Please keep us posted.
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Middle-aged (83 yo) dx Nov 4, 1997 w/MDS-RA+pancytopenia, tx about 18 mo. Responded to EPO+G-CSF. Ferritin dropped from 2500 to 480. Three non-fatal heart attacks, five non-fatal strokes and a lot of TIAs. Otherwise in very good health.
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