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Does anyone else have AML with ddx41 genetic mutation?

Blood Cancers & Disorders | Last Active: Mar 10 11:33am | Replies (9)
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@fortuitous

HiLori,Yes they warned me that with my age(74)and my generally decent health a transplant would be quite riskey.The hematologist oncology team at the university of Chicago sent me to mayo to meet with an aml specialist who advised us that I had a lot better chance at survival without the transplant..We are going to make another visit to mayo in May hopefully to meet with the same doctor.

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Replies to "HiLori,Yes they warned me that with my age(74)and my generally decent health a transplant would be..."
Lori, Volunteer Mentor | @loribmt | Mar 9 4:49pm

I’m happy to hear you’re being seen by an AML specialist from Mayo-Rochester. It’s my home away from home! I trust the hematology and transplant departments with my life so I know you’re in the very best hands with them!

There are a couple of other members in the forum with AML or MDS who aren’t able to follow through with a transplant who are on the same treatment program that you’re taking right now. There’s a great conversation with
@lindagi @tampakaren @immaninja and others in this discussion:

~AML, age 78, taking Decetabine/ Venetoclax, no transplant
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/

Hopefully you’ll meet with your same specialist in May. It’s nice to have the same doctor for continuity. Once the appointment is scheduled and available on the portal, you should be able to see the name of your doctor.

Are you experiencing any side effects with your treatments?

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