Nearly 2 years ago, my dad was diagnosed with AML, likely progressed from MDS. He’s been on a regimen of decitabine infusions, then later added Venclexta orally. In March a second bone marrow bx showed the AML in remission. His MDS has progressed though, with falling cell counts of all categories. His hemoglobin finally fell under 7.0, and now he is transfusion-dependent. We are talking with hospice today.
I’m having a hard time finding information about hospice care for end-stage MDS – what to expect and what is helpful for comfort. Also, I’m wondering about what sort of comfort care can be administered in hospice care. Since none of his current treatment is curative, can any of the current treatment continue – should it? (decitibine, Venclexta, transfusions, preventative antibiotic/anti-fungal/anti-viral) His oncologist has given him options of continuing all, some, or none, but hasn’t made any specific recommendations. It’s rather confusing.
I would appreciate any guidance or sharing of experience. Thank you!
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