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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
@sonieaml
I was diagnosed with MDS/MPN/sMF in 2017. The molecular panel indicated I have the JAK2, SF3B1, SRSF2, and IDH1-R132H mutations. I had labs on Monday and the pathology report came back indicating the number of blasts has increased significantly which indicates disease progression. So my Oncologist at Sloan requested more labs and a sonogram. Depending on what these new tests indicate I may have to have another BM Aspiration and Molecular panel. So tired of this nonsense.
Replies to "@sonieaml I was diagnosed with MDS/MPN/sMF in 2017. The molecular panel indicated I have the JAK2,..."
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@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.