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Does anyone have MDS with the SF3B1 mutation?
Blood Cancers & Disorders | Last Active: Jan 29 11:46am | Replies (5)Comment receiving replies
Good day to all. I have been reading about the different meds people have been trying. I am so glad some saw results from REBLOZYL. We were not so fortunate and have taken our f irst round of Inqovi. Red cell levels are not holding, but we hope that with the next round, we show some improvement. Will keep you posted. Thanks for the support and information from this site
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@justmeb5
I was diagnosed with AML in 2024 and had induction therapy which put me into remission. I continue to have treatment however my latest BMB discovered that the SF3B1 was now a mutation and I have MDS. Since my AML was so full blown when it was discovered and NPM1 and FLT3 were so prevalent therapy for those mutation were started in ernest. Now those 2 mutations are not showing up but SF3B1 is. My Hem/Onc said it isn’t anything I need to be concerned with and maybe the reason my WBC, RBC, Platelets and ANC never get up in the normal range. I am feeling really goid and trust my team to know what is best for ne so for now they have not added any drugs to treat the MDS…but continue to monitor my numbers every 2 weeks and treatment with Venclexta and Dacogen every 6 weeks.
I wish and pray for everyone you achieve the success I have.