Oh David sorry to hear this. Try to keep your spirits up, and continue the battle! At Day t+47 My husband is finally starting to feel better after Budesonide for aCVHD of the small intestine, and his counts are looking good, but his 30 day mixed chimerism (only 48% donor in myeloid subset, >98% in lymphoid subset) shows risk for relapse or graft failure. Already talking DLI.
This is indeed a cruel disease! We will keep you in our thoughts and prayers.
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.