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Old Fri Jan 15, 2021, 11:48 AM
quantpsyc quantpsyc is offline
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Join Date: May 2017
Location: Leland, NC
Posts: 24
John your numbers look great., no worries on your end for platelets. And Jakafi seems to agree with you!! I think Ed's issue was that with already low platelets, the expected bump down on the Jakafa was critical for him.
He has been at 100% donor for over a year (bmt May 2019) His platelets recovered to normal levels before dropping precipitously. Maybe ITP, maybe GVHD. Maybe some of the cocktail of meds he is on. They admit they just don't know but the Dx on record is ITP.
Ironically he now has been diagnosed with a blood clot in the leg. They say his body is overcome pensating to the low platelets by trying to clot faster. BC of the low platelets they can't put him on blood thinners, so this afternoon he gets an IVC filter put in to avoid movement of the clot to the lungs.
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Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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