← Return to Relapsed AML: Anyone choosing no treatment?

Discussion
Comment receiving replies
@loribmt

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?

Jump to this post


Replies to "Good morning, Kathy. AML can get worse very quickly if not treated. You mentioned that the..."

I have yet to speak with them about the end game. I will do the transfusions, more than likely, but I guess it depends on how I feel when I get there. I'm thinking I will though. I do not have a DNR bracelet, and thank you for suggesting that, I hadn't thought that far ahead. I have no blasts yet, or didn't in the last BMB in early June, but I'm hoping to have another in November so we can keep an eye on that. So right now, just an extremely small number of NPM1 mutations and a teeny tiny amount of IDH2, which has grown very slowly over the past 4 months which is what they're basing their time frame on.
I'd love to keep talking to you, it's very helpful to have someone who respects my decision!
I am surrounded by friends and my three adult children. My eldest wants me to go live with her early in the new year so we can maximize time spent together. I'm very fortunate!