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Relapsed AML: Anyone choosing no treatment?

Blood Cancers & Disorders | Last Active: Dec 14, 2023 | Replies (33)
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@kpurtill

I've been told about an option of one drug but really just choose to be drug free.
I was not as close as you, but they said I'd have two weeks left if I didn't do treatment in 2021, and yes, I can imagine I would just go to sleep and not wake up at some point. I wasn't in distress or too much pain, so I'm not afraid of it.
I'm more wondering if someone has an idea of timeline when 2 our of my three markers have reappeared, though still at a low level. A year, two, three? Until it becomes full-blown AML
Thank you so much for your input! I appreciate it. And I'm so glad you're doing so well and loving life!!
Kathy

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Replies to "I've been told about an option of one drug but really just choose to be drug..."
Lori, Volunteer Mentor | @loribmt | Oct 7, 2023

Good morning, Kathy. AML can get worse very quickly if not treated. You mentioned that the return of mutated MPN1 cells were first seen in the BMB and now in the peripheral bloodwork. Myeloblasts aren't typically found in the circulating blood of healthy people. By the time that happens, it’s generally from overcrowding in the bone marrow and these over-proliferating cells are being pushed out into the blood stream.
It would be difficult to know how much time you have left but you’ll get a little better idea of this with your next 2 or 3 blood tests. It will show a trend in how quickly this escalating.

I respect your decision and your pragmatic approach to this. In all honesty, I felt this was an easy exit too…but I wasn’t ready yet and decided to fight the battle of a lifetime. (And it felt like it! LOL) But I can also understand if you’re not willing to go through all that chemo again. I’m here anytime you want to talk about it with the same level of pragmatism.

Your hematologist oncologist would be the key person to provide a timeline for you. It would also be important to discuss the end game strategy with your doctor. If you’re choosing no treatment. it will be important to decide whether you’ll forgo transfusions as you become more anemic or if you’ll opt going to hospital if needed. Do you have a DNR Medic Alert bracelet?

Kathy, do you have friends and family around?

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