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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 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!

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Lori, Volunteer Mentor | @loribmt | Oct 10, 2023

Good morning, Kathy. Looking back on another reply you wrote, I see you and I have the same 3 mutations. Odd things to have in common. 😅 But somehow that unites us in this weird odyssey of AML we’ve been weaving through, eh?
It’s excellent that there are no blast cells present yet. That paints a clearer picture and is encouraging. That does give you more time to get on with your life. I love, LOVE that you’re able to go live with your daughter in a few months. That time together will be such a treasure for both of you.

I think you’re handling this well and I truly can understand and respect your decision to ride this trail out on your own pony… I remember my grandmother saying those words when I was little. It just popped into my head…hadn’t thought of that phrase in a long time. But it’s so appropriate.

When you move in with your daughter, will you still be near your hematologist oncologist?

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