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.