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Just got my blood test results today. I have MDS
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (25)Comment receiving replies
@mjpm2406 the only mutation I can relate to at this point is the newly found SF3B1 found during my BMB in December as I shared before. My FLT3 and NPM1 mutations (AML) are tracked with the MRD blood test which I had last Thursday. That blood draw is run every 3-4 months. Those results should be back next week.
However you are almost 10 years out from your initial diagnosis, right? When you got diagnosed did you think you’d be posting in 2026? I certainly didn’t think I would be doing as great as I am. The tests, treatments and options have improved so much for AML in just the last 2 years!
I hope your test results will be definitive and your Medical team puts you on a path so you can improve with each passing day. Thankfully for now the MDS isn’t an issue and this December is when I have a BMB looking for SF3B1 mutation. If anything has changed my HemOnc MD’s will have a plan of action I am sure.
Keep us posted on your path please.
Replies to "@mjpm2406 the only mutation I can relate to at this point is the newly found SF3B1..."
@sonieaml
When I was diagnosed with MDS/MPN/sMF in 2017 my Oncologist at Sloan said the life expectancy for this overlap disease was 5-10 years and that it would most likely mutate to AML. Originally, on the MPN component, I had ET, with a platelet count of 80,000. Last year the MPN component mutated to PV. My platelet count is now around 100. With PV, your red blood cells become overactive and they get very large. So I have to get a phlebotomy every month. My current labs indicate a significant increase in blasts and the amount of immature white blood cells. That most likely means AML but I have to undergo more tests to confirm that. I know that once you get AML it's really tough. We’ll see.
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@sonieaml
The SRSF2 gene us a splicing gene normally associated with MDS. The JAK2 gene is normally linked to MPN disorders. The SF3B1 mutation is also a splicing gene and is normally linked to MDS. The IDH1-R132H gene mutation is typically linked to AML.