Does anyone have MDS with the SF3B1 mutation?

Posted by nacimiento @nacimiento, Jan 28 3:49pm

For 13 years, doctors and universities thought I had WIAHA. After a recent biopsy, it turns our I have MDS with a mutation. The mutation causes the exact symptoms of the anemia. Also. this mutation leads to leukemia.
I just started with injections, every 3 weeks (for life) to treat the mutation. There is no cure, however they have a good success rate of bringing hemo numbers back up. Mine are currently at 7.5 and declining. I am going to the hospital tomorrow for a transfusion to help with numbers. The med is luspatercept (robozyl).

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jeffreykassover1 | @jeffreykassover1 | Jan 29 8:14am

I have the same mutations with my MDS. I am about to try Immetelstat. Any information would be helpful.

justmeb5 | @justmeb5 | Jan 29 8:19am

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

sonieaml | @sonieaml | Jan 29 9:47am

In reply to @justmeb5 "Good day to all. I have been reading about the different meds people have been trying...." + (show)

@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.

vng | @vng | Jan 29 10:15am

My husband has this mutation for his MDS plus others . He is 83 years old and used to be quite healthy .
He was put on Reblozyl to start 2 years ago ...it worked for about 6 months .
Then he was switched to Vidaza and it worked well for over 2 years .
Now he is on Vidaza ( for maintenance ) plus an EPO injection to help with kidney function and to raise his red blood cells at the same time . His first EPO injection will be next Monday . We are hopeful for a higher hemoglobin level as a result of this EPO and therefore he will have more energy .
God is merciful .
Always pray for God's healing power !

nacimiento | @nacimiento | Jan 29 11:46am

Thanks for the valuable information. I have not heard of Vidaza.
As I write this, I am getting a transfusion to hopefully kick start the increase in my hemo.
keep the faith.

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