Questions about AML quality of life

Onlineallthetime

Hello all. My mother was diagnosed with polycythemia (myeloproliferative neoplasm) August of 2022 at 74 years of age. Phlebotomies were sufficient treatment for almost a year but her platelets were continuing to rise so we started hydroxyurea 500 mg every other day and things were quickly under control and we had a nice baseline and decent quality of life. That all changed overnight recently when she began feeling more run down about a month ago.

We chalked it up to several things that seemed causatively related (family coming to stay for a week/late nights up talking and playing games/change in routine, etc.) until recent labs showed hematocrit suddenly spiking so we scheduled a phlebotomy and figured she'd feel better once we got that back down. However, after that phlebotomy she felt even worse and when the results came back her hematocrit had dropped to 31, hemoglobin to 9, and platelets to around 70,000.

We were confused about the massive sudden swing in the numbers that must have happened in the 2 weeks between the labs with the high counts and the phlebotomy. At any rate, this week especially she can barely function. Extreme exhaustion and constant pain. She's gone from walking a mile a day just a month ago to needing assistance getting up off of a chair. We were told on Tuesday that it looks like it's progressed to leukemia and she is scheduled for a bone marrow biopsy on Monday. To be honest, I'm not even sure how we'll be able to get her out of the house and to the clinic. She doesn't even think it's necessary to have done as she is not a candidate for the curative treatment and doesn't want to "draw it out." But I assume, at the least, insurance (Medicare) will require something other than just bloodwork as diagnostic criteria and I will be calling the office today to inquire about that along with other questions we were too gobsmacked at the appointment to think to ask.

I suppose my question for anyone who might have experience with AML patients not going through curative treatment is: Is there any hope for improvement of quality of life with the other treatment options offered? If the treatments reduce cancer load does that result in reduction of symptoms to the point where she can function or do they solely extend the time she has left only to have to deal with the misery even longer? Her wish is to go as quickly as possible and as peacefully/pain free as possible. We understand hospice care is on the horizon but are wondering if we need to go straight there (which I assume would also be immediate heavy narcotics and minimal consciousness as pain control at all costs is her primary goal) or if there are treatments to control the pain while leaving her functional. Of course we'll be discussing everything with her hematologist/oncologist but I've found speaking with others about their real world experiences gives us more insight into feasible options and what to expect. Thank you.