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Can anything help ongoing fatigue from myelodysplastic syndromes (MDS?

Blood Cancers & Disorders | Last Active: 6 days ago | Replies (11)
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@marco88

We learned that MDS can be related to AML; but not necessarily. My husband has had MDS 5q deletion Dx’d seven years ago, the 5q chromosome is damaged, missing part of the structure.

His Flow Cytometry analysis sometimes reveals leukemia markers, but over a few years time the markers are inconsistent - sometimes the markers are seen, sometimes not; that’s so far with four Flow Cytometry tests. When MDS transforms or transmutes to AML, we’re told there’s no cure and very little meaningful treatment.

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Replies to "We learned that MDS can be related to AML; but not necessarily. My husband has had..."
Lori, Volunteer Mentor | @loribmt | Dec 29, 2024

Hi Lee, I recently replied to another post regarding your husband’s weekly Neupogen injections. Here’s the link:
https://connect.mayoclinic.org/comment/1199389/
It’s important not to put the cart before the horse in this case, I think. From my understanding the 5q deletion isn’t often associated with progression to AML. And depending upon the form of AML and the possible mutations behind the leukemia, there can be some meaningful treatments.
In my case it was chemo and a bone marrow transplant. But a friend of mine, whom I met in my hometown while mentoring her through her AML journey at our local hospital, had AML without the most offensive mutations. She had 5 chemo rounds and has been cancer free for 2 years with no sign of relapse.

So don’t lose faith! It’s important to stay focused on the future and ‘not go looking for trouble’. 😀
Has your husband’s doctor been able to offer an alternative medication now that he’s off Revlimid?

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