Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Well, I may be in a pickle.
My former leukemia doctor would still order tests to be run on bone marrow (research I suppose). Well, it was just posted to my MDA online account today and it revealed two mutations TP53 and GNA11.
The scary part is that I've never had these mutations before. My blast count on my most recent bone marrow was 1% and no "bone marrow cancer" mutations were detected. The bone marrow completed in December did not have these mutations present. I think what ultimately makes it worse is that the TP53 mutation is often assorted with other cancers outside of the bone marrow.
I'm awaiting my doctor's response on next steps. Please keep me and Tony in your prayers as we journey through uncharted waters.
Andy
My former leukemia doctor would still order tests to be run on bone marrow (research I suppose). Well, it was just posted to my MDA online account today and it revealed two mutations TP53 and GNA11.
The scary part is that I've never had these mutations before. My blast count on my most recent bone marrow was 1% and no "bone marrow cancer" mutations were detected. The bone marrow completed in December did not have these mutations present. I think what ultimately makes it worse is that the TP53 mutation is often assorted with other cancers outside of the bone marrow.
I'm awaiting my doctor's response on next steps. Please keep me and Tony in your prayers as we journey through uncharted waters.
Andy
You are in my prayers.
Hugs
Karen
I'm glad to hear your 100 day marrow looked good and cancer-free! I am hoping to get my results tomorrow.
My guess (and hope and prayer) is that they are benign mutations that your donor had already and they are nothing to worry about.
I will continue praying for you as always, and for a thorough explanation from your doctor to alleviate concerns.
John
I echo what John said. Praising God for great BMB results and praying that these mutations are a fleeting blip and will go away.
Blessings
Julie
"They ran a new genome sequencing test (something that just came available to this field last year) and found one additional mutation, a PHF6 point mutation on chromosome X. It's not highly prognostic in AML, only 3% of cases. This marker actually occurs in T-ALL a lot so this doesn't really help or harm or current treatment plan"
And so we (or the docs) don't know too much about these new markers & mutations, as these tests are so new too. The good news is they know more about the bad ones already and if the two that were found are not highly related to AML then I think we're in the same boat. It's not highly prognostic.
My question is, could these new mutations be from the donors marrow dna and not yours or Tony's?
Let me know what your doctor says
My donor happens to be my youngest sister. And my family unfortunately has a cancer history beyond my stuff. I'm completely okay with this just being a me thing. I don't want her to have to ever be involved in this world.
Will keep y'all posted.
Andy
Andy
From what I read and discussed w the dr, even with having additional mutations, inversion 16 still trumps everything else. as there's just not enough known about how some of these others play a role yet.
I've been researching how to treat the phf6 and have had no luck, even though 20% of ALL patients carry it.
Focus on your recovery and enjoy being home!!!!!