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Alhamdulillah, I’m about 3 years in with a high-risk type and still stable with no relapse so far. what helped me is staying consistent with treatment, not overthinking every symptom, and learning to listen to my body.
Most importantly , “tie my camel,”
And leave the rest to Allah.(God)
InsyaAllah
🩸🙏
Answer Summary
Members responded with incredible hope to the question about doing better than expected with multiple myeloma, sharing stories of stability... Read more
"Did I already blow through my car t?"
I sure hope not.
We are close to the same pace of treatments and results. I had my Car-T in Jan 2026 and came out MRD-. I have no immune system and just had IVIR last Friday. So really can't use immunoglobulins as a measurement (I used to in the past). And now my monthly light chain results are all over the place every month. 20% swings up and down. And even my WBC/RBC bounce around.
It seems like the T cells are still active and killing good and bad things. So blood test results don't seem to help.
I also had a PET scan last month and it was clean.
So who knows. This disease is really crazy and I try not to get that "next blood test" anxiety anymore. I just kind of ignore it now and live my life.
I hope things stabilize and the CAR-T keeps working.
I was diagnosed with high-risk MM in January 2019. I had SCT on June 1 that year. Doctor expected relapse in 2 years. I've never been in total remission, but still doing okay well past that 2-year prediction!
Some days are easier than others. I'm also older. So much depends on your
age and physical condition
BjB
I am almost 10 years out from dx and have never yet needed treatment...definitely somewhat stable I guess!
I was on revlimid for 8 years after transplant. I was taken off due to small strokes otherwise I’d still be on it. I was on a trial. So 4 years off meds I never thought possible. I’m doing better than I ever thought.
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