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Old Tue Sep 3, 2019, 12:51 AM
quantpsyc quantpsyc is offline
Join Date: May 2017
Location: Leland, NC
Posts: 20
Fighting the good fight!!

David so glad to see your post. Have been checking often for your update, thinking about you and praying for you. I have read of cases that a dli and/or maintainance HMA seemed to recover the graft. Will keep praying for your full recovery!

Thanks for asking about Ed. After a strong early response to high-normal territory for platelets and WBC, and rbc slowly approaching normal, Ed had a complete loss of response in all cell lines. Transplant team says sometimes this happens, but it will turn around. Biopsy 30 days ago showed no sign of relapse (no blasts and no dysplasia, but very hypocellular marrow). Dr is perplexed that it has not turned around yet. They are trying to wean him off of any drugs that can cause myelosuppression (which is like...all of them). His ANC went to near 0 so they started his Granix again. That brought the ANC back but pushed his platelets even lower, so they stopped the granix. For several weeks he was getting transfusions of platelets and prbc (he never needed transfusions prior to transplant, his major issue was with WBCs and infection). It's now been over two weeks, he seems to slowly be coming back (nosebleeds and bruising has stopped, and energy seems a little better) Tomorrow he gets blood tests and sees transplant dr. I know dr. wants to do another biopsy before deciding next steps. Will update when we know more.
May God watch over each of us, and help us travel this rocky road! Kathleen
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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