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Newly diagnosed with AML (FTL3 TKD)
Hi I’m Jamie, 39 and I was diagnosed on 5/26/24 with AML mutation FTL3 TKD.
I live in Dubai and can’t really find a lot of information or stories of others with a similar diagnosis to mine. We are still waiting for the BMB to come back as it is sent to the Mayo Clinic with a turnaround of 2 weeks. The general plan is to complete 7/4 and so far I have completed 1 cycle and will start Midostaurin tablets for 14 days soon. If anyone has the same diagnosis, can you please share anything helpful as I’m feeling very scared at the moment.
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Does anyone know which mutations in lukemia are the worst....
@bettersleep68 There are several mutations that can be associated with Acute Myeloid Leukemia. Some mutations may pose a little more of a challenge being resistant to treatments than others. Since you asked, here is a list of, I guess you can call them, the ‘worst’ offenders…not in any particular order. They each have their own characteristics: FLT3-ITD, NPM1, IDH1, IDH2 and TP53.
The good news is that there have been huge advancements in treating AML over the past decade. Especially with targeted drugs for some of these culprits.
According to an article in Nature.com from The Cancer Journal, “Since 2017, twelve agents have been approved for the treatment of AML subsets.” https://www.nature.com/articles/s41408-024-01143-2
It’s important to note though, just because a person has one or more of these mutated genes, treatments and outcomes can vary widely from what statistics show! So please be careful not to run down a rabbit hole with this information. I had 3 of these mutations with my doctors giving me less than a 50/50 chance. Here I am almost 7 years later from my diagnosis with AML, living an amazingly healthy life. I received the targeted drugs which significant success. It’s super important to remain optimistic that these treatments will work for you!
How have you been feeling with your treatments? How have the labs been looking lately?
Did you see that Carolyn Kennedy's daughter has been diagnosed with AML?
@normahorn
It isn’t Carolyn Kennedy.
Please check again.
@loribmt
So happy to read of your success long term with AML. I believe you did have a BMT correct or was it induction therapy and on going maintenance?
@loribmt .thank you for the information..my labs are all good...I have these mutations that just won't go away..