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I am newly diagnosed with AML. with the inv(3) mutation,

Posted by marlysmae @marlysmae, Jun 28, 2024

I am Vicki, age 71, and was diagnosed with AML this month. It started with an MDS high risk after biopsy in April. Has since morphed into AML with inv(3). Has anyone else experienced this mutation? I am receiving excellent care at Rochester Mayo. Spent a week in the Methodist Hospital, and now receiving outpatient treatment for a month. Would be interested to know if anyone has undergone a BMT with this mutation?

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Lori, Volunteer Mentor | @loribmt | Oct 14, 2024
In reply to @rhskin911 "Hi there, I’m on here just to try to get some questions answered for my father...." + (show)
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Hi there, I’m on here just to try to get some questions answered for my father. He was just diagnosed with AML and to be honest, I’m not very confident in the dr. He missed this diagnosis and didn’t think he needed a bone marrow biopsy. Long story short, he was hospitalized and very ill and the hospitalist ordered the biopsy and we got the results this past Friday. They want to do chemo both oral and IV. I have requested an appt to have another Dr look at him. We’re waiting for the mutation test yet. What was process for you when you started treatment and how did they determine to do BMT for you? My dad is 83.

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Hi @rhskin911, Just wanted to check in with you to see how your dad is doing with his AML diagnosis. By now he should have gone through a couple rounds of treatment. Has there been any positive changes to his health?

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edelgado13 | @edelgado13 | May 8 2:15pm

My brother was diagnosed with AML MECOM inversion 3 and now they believe it came from undiagnosed MDS he is 38. They have gone back 2 years and by looking at labwork they think he had MDS years prior, He is at MD Anderson underwent targeted therapy and BMT transplant at day 72 his bopsy showed cancer 5% blast now we are at day appro 120 after BMT and he is having to return to MD Anderson they believe the cancer is back and more aggressive can someone with this mutuation please tell me what treatment they have done and how many years out they are?

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Lori, Volunteer Mentor | @loribmt | May 8 3:51pm
In reply to @edelgado13 "My brother was diagnosed with AML MECOM inversion 3 and now they believe it came from..." + (show)
Profile picture for edelgado13 @edelgado13

My brother was diagnosed with AML MECOM inversion 3 and now they believe it came from undiagnosed MDS he is 38. They have gone back 2 years and by looking at labwork they think he had MDS years prior, He is at MD Anderson underwent targeted therapy and BMT transplant at day 72 his bopsy showed cancer 5% blast now we are at day appro 120 after BMT and he is having to return to MD Anderson they believe the cancer is back and more aggressive can someone with this mutuation please tell me what treatment they have done and how many years out they are?

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Hi @edelgado13 Oh gosh, I so sorry to hear about your brother’s setback after all he’s gone through already with his AML and BMT. AML can be a formidable. Some of the mutations and subtypes with genetic abnormalities can sure keep our doctors on their toes. Your brother is in excellent hands with MD Anderson. They have the deep bench of knowledgeable hematology oncology specialists to hopefully be able to offer some innovated treatment options for him.
At 38 he’s so young to be going through all of this. But his age can also work with him. I’m sure he, along with all of you, his family and friends, are so disappointed and frustrated. But there is more to be done and I’ll join you in hoping for the best! I had AML with several aggressive mutations, 7 years ago and learned to never give up hope!

Because MECOM Inversion 3 is a rare bird it may take time for others to see this post and pop into the conversation. But I’d really like to follow along with your brother’s journey. I’m here if you need a shoulder or sounding board.
Will you keep me updated on his treatment please?

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