Relapsed AML: Anyone choosing no treatment?

Posted by kpurtill @kpurtill, Oct 6, 2023

AML diagnosed in May 2021, chemo and consolidation and in remission by September 2021. I was in remission for 19/20 months ish when my genetic markers began showing up. NPM1 being my main driver. First in a BMB then in the blood, but at very low levels. I'm choosing to have the rest of my time be fabulous and choose not to have treatment, however, I'm struggling to get an idea of the timeline. I'm hoping some doctors will chime in here! I'd love to hear from others who choose no treatment, though

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

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https://pubmed.ncbi.nlm.nih.gov/32593707/

As always, consult with your doctor.

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Honestly, if you told my husband his MDS was back I’m not sure what he would do. That initial chemo just about did him in and took at least 5 months to have any kind of quality of life. Now almost a year out and is remission for the cancer and 100% donor we still live week to week blood work. Not fun for sure. Not many activities since so many other complications came into play. So if it comes back I truly think he would decline treatments. God bless you. Prayers

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@jrwilli1

Honestly, if you told my husband his MDS was back I’m not sure what he would do. That initial chemo just about did him in and took at least 5 months to have any kind of quality of life. Now almost a year out and is remission for the cancer and 100% donor we still live week to week blood work. Not fun for sure. Not many activities since so many other complications came into play. So if it comes back I truly think he would decline treatments. God bless you. Prayers

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Thank you for sharing that with me. As we all know, recovery is a long and hard road, what most people don't talk about is the trauma of it all. I used to be fearless, but now have anxiety about unrelated things. We need to talk more about it to support each other.
I hope your husband stays in remission!!

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@kpurtill

Thank you for sharing that with me. As we all know, recovery is a long and hard road, what most people don't talk about is the trauma of it all. I used to be fearless, but now have anxiety about unrelated things. We need to talk more about it to support each other.
I hope your husband stays in remission!!

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Yes, each of our roads are different and how the body reacts. He had graph vs host disease as well and a bad stint with CMV and still has a fungus in his lungs, low platelets, blood clot in groin and sodium is off. So with all this no one except the person going through it knows all you go through. I wish you well in your journey.

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