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Jinksblack
Multiple Myeloma Discussion • May 1, 2024
Starting Arcellx CAR-T: What Was It Like?
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Diagnosed Jan 2017, just before 60th birthday. As I have said in another post, I had 3 bones in foot, 2 in clavicle, forearm and then 1 (then 3 more) vertebrae fracture. Finally figured out I had MM, and had Lambda of 12,650! After literally 1 cycle of VRD, down to 200, and eventually remission for almost 5 years! Did ASCT ABOUT 3 month in, at remission. Then on maintenance revlimid pill. We didn’t do MRD back then. My first MRD was clean, a couple of years later, then when it started rising it was my first signs of coming out of remission. Since then, I have done combinations with Dara, Kyprolis, Pomalyst, alway the dreaded Dex, etc. I am now going into CarT cell Arcellx trial. I go to a wonderful MM specialist at UTSouthwestern in Dallas, TX - a couple of hours from home. They currently offer two other CarT cell therapy, and have seen one have less serious side effects but hasn’t proved to hold long term. The other more harsh side effects. But if it works, holds longer. This trial will hopefully be easier on me, AND hold me long term! My doctor has always said that the longer I can stay alive, the more and better options they will have to treat MM - and maybe someday a cure. Back to CarT cell, I have read horrible things about the first couple of weeks after the infusion. Comatose, speechless, (husband may enjoy that), even ending up with Parkinson’s. These are with the other two, so far not the Arcellx. This trial started in 2019. In phase one, one patient fatality because too much cancer killed off too fast and was toxic to patient. They are now in Phase 2 and seem to have a handle on amount of cancer you can have or not have to avoid that. ANYWAY, anyone that has done CarT cell, any of them, I would love to hear your experience in detail! And especially if you have been in the Arcellx trial!! Side effects, getting energy back (seemed forever with SCT) , how long in remission (so far). I’m excited that if it works, it will be my first time not on chemo or some type of maintenance pill in 7 years! More excited that I am still here after 7 years! Thanks in advance!!
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