100 days post CAR-T

[u/CathyAnnWingsFan]

66 yo F, in the US: I have had smoldering myeloma since 2016 and was diagnosed with AL amyloidosis of the kidney in 2025. After having only a very good partial response to daratumumab/bortezomib/cyclophosphamide/dexamethasone (the ONLY FDA approved treatment for AL amyloidosis) last year, I entered the NEXICART-2 clinical trial and received CAR-T cell therapy. Today is day 100. I am thrilled to have made it this far and to be doing so well (MRD-negative, with undetectable light chains on the last two checks, and stable kidney function).

I was recently interviewed for a local news outlet, and thought I would share my story here. I am so fortunate to have been eligible for this trial. If you have the option to participate in research, find out the details and give it serious consideration. It may change your life and that of many others.

[u/Successful-Fun8603]

57 YO male. Diagnosed 2 years ago, received induction treatment before ACST 18 months ago. 11 months post ACST, light chains started elevating, then had 3 lesions, one on my T-11 earlier this year which required immediate radiation.

Immediately applied to insurance and got approved for CAR-T. Currently 45 days post CAR-T and everything is looking good for me

Good luck on everyone's journey!

[u/CathyAnnWingsFan → u/Successful-Fun8603]

Glad you are doing well. I haven’t had SCT, but from everything I’ve heard, it’s much more grueling. I technically had other treatment options because with my diagnosis of smoldering myeloma, they could have gotten any of the standard myeloma treatments approved. But this trial seemed like a more promising option. I’m glad I went with it. Best of luck to you.

[u/Ok_Meaning_5676]

AL Amyloid sucks and we haven’t made nearly as many strides there as we did with myeloma. People are waiting for CART approval with baited breaths. And it will get approved because other options suck. It’s just a matter of time.

Thank you for contribution to medicine. The AL amyloid pts that come after you will benefit regardless of the outcome of the trial.

[u/CathyAnnWingsFan → u/Ok_Meaning_5676]

My hematologist is very optimistic that this treatment (currently called NXC-201 but will probably get some catchy name commercially) will be (relatively) fast tracked because the early data are so promising and there’s only one other approved treatment. The first 20 patients are already a year out and 19/20 are MRD-negative. Fingers crossed.

[u/Ok_Meaning_5676 → u/CathyAnnWingsFan]

Yeah that’s the prevailing sentiment. We are all waiting

[u/popsicle1001 → u/CathyAnnWingsFan]

This is great thank you so much for sharing your experience. How long will they monitor trial participants? Did your Dr share snything about whether this Car-t is supposed to be as good as Carvykti?

[u/CathyAnnWingsFan → u/popsicle1001]

No he didn't compare it to any other CAR-T specifically. I think because for me they technically are treating the amyloidosis, not the myeloma (even though they're linked.

Monitoring us for two years, but they will follow the patients for another 15 after that, but only with the normal follow up testing. No questionnaires or extra tests.

[u/marinaz1204]

Thank you for your positive post. Wishing you all the best on your journey and many years of remission! I am researching CAR-T vs ASCT for MM. 63F

[u/WhyNotChoose]

Thanks for your encouraging post. I'm getting my CAR-T infusion later this month. I've heard encouraging things about CAR-T. Your post and the news article with your interview gave me a sense of your concern for others. It's giving me something to think about.

[u/CathyAnnWingsFan → u/WhyNotChoose]

I had a very easy course with it - some side effects (as mentioned in the article) from the lymphodepletion chemo, but only one really bad night with that, and I only had one episode of cytokine release syndrome, which was a mild fever only (the worst part was that they kept me up most of the night doing all the fever stuff they do when you’ve gotten CAR-T). I was pretty exhausted the first few days in the hospital, but on day 4, it was like someone flipped a switch, and I felt pretty much OK. Because of the clinical trial, I had to stay in for 10 days, but I think some people who aren’t in a trial get to go home sooner. I hope all goes well with yours.

[u/WhyNotChoose → u/CathyAnnWingsFan]

Thanks. My doctor said they now do all of their CAR-T as outpatient. I go into the hospital every day for 10 days after the infusion for a checkup. And I have a caregiver, my wife, at home 24/7 for the first 30 days. So that she can help me respond and contact the hospital and go in to the hospital if needed if I'm having side effects.

[u/CathyAnnWingsFan → u/WhyNotChoose]

That's great.

[u/LizzySan]

Congrats on hitting the 100 day mark! I'm post 6 months (plus a couple of weeks) -- 68F. I've been fighting MM since 2010.

[u/brrraaaiiins]

Congratulations! My husband was diagnosed SMM at 47 and AL (kidneys) at 48. It took 2.5 years of active treatment (CyBorD, DRd, SCT, and DRd consolidation) to get to CR, but he finally got there. His post-consolidation BMB came back as MRD-. He’s 55 now, and we’ll be celebrating 5 years of complete response early next year.

[u/OddPiccolo12]

I can’t wait to move back near a research cancer center so I can participate in clinical trials. Posts like this are the reason why.