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Does anyone else have AML with ddx41 genetic mutation?

Posted by fortuitous @fortuitous, Mar 8 4:06pm

I Was diagnosed with aml or acute myeloid leukemia about 14 months ago.They (doctors) were preparing me for a stem cell transplant .But after a genetic test it was put off because I have the ddx41 mutation.I would like to talk with others with the same condition.Right now I'm taking venclexta and decitabine and am doing pretty well..

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Lori, Volunteer Mentor | @loribmt | 16 hours ago
In reply to @fortuitous "I Was diagnosed with AMLin southwest michigan 16 months ago then went to the u of..." + (show)
@fortuitous

I Was diagnosed with AMLin southwest michigan 16 months ago then went to the u of chicago for treatment plan and to prepare for stem cell transplant.they found the ddx41 mutation and was sent to mayo to talk with an AML specialist...who strongly advised against the transplant,We saw him again this month and he's reducing my degogen and venclexta medications.Anyone else on this journey?

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Hi @fortuitous, There’s another member in Connect (@sherbs)with the same DDX41 mutation only with MDS, not AML. I just wanted to make sure you saw their message to you. Here’s the link. https://connect.mayoclinic.org/comment/1188060/

How have you been doing since reducing your degogen and venclexta?

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