Hi Angela – your husband and my father seem to be in similar stages right now as my dad has also arrived at the palliative stage. He too has had MDS for years and his largest issue to start was (and is) low platelets. He was in a clinical trial group about 1.5yrs ago which was rather effective affording him more time and decent quality of life. Currently he’s at home and visits the hospital every other day for platelets and/or rbc transfusions. Not easy but he is happy to be at home and sleep in his own bed. He’s logged many days (weeks) on the haematology floor this fall when he would spike a fever. Possibly due to infection from his pic line, or his chemo, or simply due to his recently confirmed progression to AML. He is also on 10 days on of venetoclax injections. And possibly decitabine but I can’t recall if that was stopped.
Happy to chat with you sometime if you’d like. It’s a tough journey for sure. Wishing you the best. – Sue
