I’m fortunate enough to not qualify for CAR-T therapy yet. It was four but I believe my hematologist here at Mayo said the FDA reduced that down to two or three lines of therapy prior to qualifying for CAR-T now. I had stem cell replacements and am going on my 11th year of remission with only one line of therapy so far. Thing is with CAR-T it’s a one shot deal. It won’t get a second chance unless your Elon Musk and own the world as it’s so expensive insurance will only pay for it once.

I went through a SCT and 5 maintenance therapies in 8 yrs. I decided to go Car T due to sick of infusions 3 weeks a month as well and therapy effectiveness was less effective. Life seems almost normal now. One visit a month for blood work and a IV Globulin infusion at my local Cancer Center if needed to boost immune response. MM has been undetectable since Car T. And these visits can be pared back if no MM detected and once immunity bounces back further. Next Mayo visit in Feb will be 6 month mark and includes vaccinations, bone biopsy, PET scan and consult.

That is a really good question, I have been on maintenance therapy for 10 years post stem cell transplant. I would love to be able to no longer take it as the side effects can be difficult at times. I pray the Car t therapy will be the answer for me some day.

Yes. I logged my experience on updates in my profile. I am roughly 4 months out from Car T infusion at Mayo Rochester MN. Questions?

Yes. Car T is not 100% guaranteed. Spend week undergoing tests to verify person can undergo treatment. Last day spent harvesting T cells. Very similar to SCT but I found process easier to undergo. There are side effects as well as with any therapy. Fever is primary one but I only had minimal issues during 6 week stay at Mayo or since. Mine were shortness of breath and needing several IV Globulins infusions. First went away 3 weeks at home. 2nd ongoing as needed. Told at Mayo they had a 3 year remission rate for 50% of patients. Car T is so new there isn’t more data beyond 3 yrs. Worth the risk for me and has worked out so far.
We stayed at Gift of Life for SCT and was great place to stay. Minimal charge for our 5 week stay. Our Car T stay was at a Stay Bridge suite with kitchen, living room separate bedroom, and garage. Charges were picked up by Car T vendor with daily food allowance. Based on income. Mayo is big on keeping patients out of hospital and monitoring was self administered using their remote tablet based system. In the end. These are my experiences. Others mileage will be different.