Just learned they are going to add Cytoxcin to my new "cocktail" with the ninlaro tho I read a study saying ninlaro didn't really help it much? Anyone else on either/both? Thanks

as a new mgus/smoldering myeloma patient just found out my journey has just begun in just 1 year jumped up to both is that concerning?

Hi my husband has been on Talquetamab since February. He gets a shot every other week and they added Dara weekly. He still has no taste. The day after he gets his Talquetamab shot, he get chills and starts shaking, is anyone doing this combination? If so, what side effects are you experiencing? What can he do to help with taste? He doesn’t eat meat or vegetables.

Anyone else on ninlaro? With or without Dex?

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!