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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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@loribmt

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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Replies to "I’m happy to hear you’re being seen by an AML specialist from Mayo-Rochester. It’s my home..."
fortuitous | @fortuitous | Mar 10 11:28am

Well my left shoulder is not working as well as before treatments.So I've been to physical therapy which seems to be helping...really a minor deal.I've had thrush for a third time.Not a lot of fun but not horrible.Played golf in southwest michigan where we live six or seven times already because of the freakishly warm but greatly appreciated warm weather.

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