I had my Abecma Car T transplant 1/2023. After many years of having MM, an ASCT, different treatments and maintenance meds Car T was the only therapy that is giving me a true remission. I still take some pills for pain and an antiviral but no chemo or steroids. Initially I had no side effects, I was discharged after 8 days and went home to recover. A few days later I began to experience the cytokine release side effects. The most glaring was a total body ache that would manifest whenever would move and try to stand up. It was (and still is to some degree) like a feeling of arthritis pain in my joints. The other main issue I developed was an extremely low immune system which resulted in many infections: the 1st was skin infection that went from cellulitis to sepsis in a few days, after that was sinus infection that gave me an excruciating cluster headache and during all of this I had issues with my digestive tract. Overall, even with all of that I still feel that the Car T was successful .. I really think it should be a first line treatment before doing an ASCT. I do an IVIG infusion every month or so to boost my immune system a bit but thats it. Someone else mentioned needing to work at getting your strength back and I agree with that 100%. As grueling as the ASCT was on my body/mind the Car T transplant made me noticeably weaker.

I am scheduled for my first set of vaccinations after ASCT in couple of weeks. If you undergone ASCT and already had at least one set of post ASCT vaccinations, please share your experience. What should I expect? How painful was it? How did you feel afterwards? How long did it take you to recover?

Hello All, After my first relapse I was put on Dara/Pomalyst/dex for the last 3 years. Since my Copay was $7,500/cycle, I used the Bristol Myer Squibbs Mckessen Copay Assistance program that credited me $15k/year and covered my OOP max in the first month. As of this year, my commercial insurance snuck in a sentence about the new "Out of pocket protection plan" (Officially called a Copay Accumulator) into the 100+ page benefit package. Basically, I am no longer able to put the credit from BMS's Mckessen Copay Assistance toward my OOP max. WHY WOULD I CONTINUE TO USE COPAY ASSISTANCE THEN??? I was very surprised to hear that I owed $5137.23 (what was left to pay towards my OOP max) before I could get my meds. So, my insurance company benefits from the $15k that I applied for and I don't. After a supreme court ruling 9/2023, it looks like Copay Accumulators are now illegal to use for medicare (see articles) if you do not have a generic alternative and also in some states. https://natlawreview.com/article/court-strikes-down-hhs-rule-copay-accumulators-implications-health-plans-and-pbms https://ipghealth.com/news/update-to-copay-accumulator-programs-recent-court-decision-encounters-setback-with-appeal I think this is unethical and should be banned from all states. The only option I've been given by my insurance is to complain via a grievance form. Any suggestions from the group? I am reaching out to my representative and also the insurance commissioner of my state (WI). Thank you!

Hi everyone, My husband is getting ready for SCT this summer. He was given the option of not stay at the hospital for the 4 - 6 weeks. Rather, he'll be going each day to the hospital for labs, etc and return home every day. He'll only remain at the hospital if any complications arise. Are there any others that have done SCT this way? Also, if you could share how you got your home ready, and any other preparations that were helpful, that would be much appreciated. Thanks!

Hello Everyone, Update on Financial Assistance Programs. HealthWell is open for Medicare Access -it still semms to be 12K Patient Advocate Foundation (copay assist) is open for Multiple Myeloma

I was diagnosed with IGA Kappa January 2023. I had my ASCT in October 2023 & have relapsed 6 months later. I have high risk features. I started maintenance therapy Feb 2024- Darzalex & Revlimid but my IGA fell in above normal range last week and Monoclonal protein showed up as well. I will be starting 2 x week Kyprolis & Pomalyst (daily) for 3 weeks on/ 1 week off. If anyone would share their experience with this regimen it is most appreciated 🙏

is there any cure for MM related bone lesions?

I am looking for anyone who has participated in allo CAR-T to potentially speak with one of my coachees.

Anyone here taking Xopovio orxenclexta? how's it working?

Hello! I’m currently smoldering since December 2022. My initial fish test showed abnormal with 1q gain, four copies and 9p24(jac2) gain, 3 copies. I just had a new bmb in March, the fish results indicated everything was normal. Does anyone know if it is normal to go from abnormal to normal without having any treatments? Have anyone experienced this?

Amyloidosis Support Groups has in-person meetings in a few cities in April; I highly recommend those meetings! https://www.amyloidosissupport.org/upcoming_events.html

I am a multiple myeloma patient from Kenya in East Africa. I was diagnosed with MM on June 2022 after many years of health problems and intractable epistaxis from 2020. Due to lack of facilities in my country I decided to go for BMT in India in late 2022. I had a successful transplant on March 2023, I am back to my country and I am currently on Lenalidomide during this post-transplant management period. I have been responding well apart from very low white blood counts which are regular but I normally get Neutas immunotherapy booster from time time.

Anyone else here dealing with Stage 3 kidney disease also? Any advice? Might have to switch meds as the dara/Pom doesn't seem to be being very effective...

After my first relapse last fall, I was placed on a DKd regimen. Very effective, but the Kyprolis causes my heart rate to elevate by 50% the night of the infusion, which makes it impossible to sleep. The Dex doesn’t help either. Has anyone experienced this and found a way to lower your heart rate and overcome the insomnia?

Hello, I started relapsing after only 6 months post-SCT (which was last August (2023)). This is my second relapse since being diagnosed three years ago. At that time I was given Dara-RVD and then maintenance until I had my first relapse in March 2023. Will now be moving into CAR-T, changing up my medication as a bridge. Was wondering if there are any folks out there who relapsed early after SCT and what your journey has been like since? I have translocation 4:14, no other mutations. Am admittedly very worried about this.....thank you!