I had stage 3 in spring 2020...fast forward 2024 had car t cell therapy...I consider myself cured 27 months now....tests great

I'm not quite two years post-sct (06/26), you're on a helluva run! I belong to a myeloma support group in Staten Island, one of the members was diagnosed when he was in his early 60s, he is now 92! I'd say he's an outlier, but he sure is inspirational. I'm on 10mg lenalidomide plus 5mg Eliquis. They say I'm stable, but not in remission. I'm 70, I'll take stable for another 20 years! Thankfully no underlying conditions, plus I exercise quite a bit, force of habit, I ran track in high school and college.
The hardest part of dealing with our situation, is the mental aspect. Knowing that there's no eradication cure and relapse is virtually inevitable, is a strain on the brain. Easy for others to say don't think about it, not so easy for us!
Anyway, keep the faith and strive to survive. Beat our situation into Never Neverland.
💪💪💪🙏🙏🙏

From what I’ve managed to decipher, for years your normal monthly blood workup determined if you were in the “remission” stage for MM. If your blood results showed normal, light chains values, normal K/L ratio and zero m- spike, then all signs pointed to cancer not being detected in your blood.

However, in 2014-2015, it was officially established the standard criteria for MRD-negativity (10^-5) sensitivity was adopted using new and very sensitive instruments (working off a marrow sample from your bone biopsy) as the new, higher standard of "complete response". I believe 10-5 means no abnormal plasma cells were detected in 100,000 cells viewed.

Then in April 2024, the FDA’s voted in favor of using the term MRD negativity as an accelerated approval endpoint for new treatment regimens.

Today, a deep remission can be measured as 10^-6, or no abnormal plasma cell in 1,000,000 cells observed.

I got off Pomalyst when I hit blood remission, but I was still was not MRD negative by those very sensitive instruments. Which means I’m taking a chance that my immune system will either clean up the 1.76 x 10^-4 (or also stated as 176 abnormal cells per million) or the few remaining cells in my body will turn against me, mutate and/or re-multiply and come back to bite me in the ass.

For me, the more important thing was to feel better, be less fatigued, less short winded and have a higher quality of life….and travel again!

So I was diagnosed in 2014, did chemo until stem cell transplant of my own cells in 2015 , got put on Revmilid and dexametasone (off after 6 months) and just Revmilid for about 10 yrs, Then stopped for a month and started on darmutraub ?? And it’s been working fine, just miss be able to walk any distance and not be so tired and week, but still wonder how long left, time on earth, quality of life when declining and bed ridden , TIME left? will be 12 yrs in October,
HOW Long has longest myeloma patient lived after diagnosis ? I know everyone has different health issues that may affect, diabetic, neuropathy, high blood pressure, fatty liver etc.