Community post
My Abecma CAR T Journey: Success & Side Effects
AI-generated title
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.
No comments yet.