As I now find myself with fewer treatment options /choices, after having tried multiple therapies over the past 4 years of my journey, I wonder if CAR T clinical trials are worthy of consideration.
I appreciate hearing from those who have tried or are familiar with this therapy, good or bad. I understand that CRS (cytokine release syndrome) is a significant, and potentially dangerous, side effect, necessitating a hospital stay of up to 10 days during treatment.
Is it deemed a last resort treatment?
Written by
HopingForTheBest1
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Cytokine release syndrome can be controlled with monoclonal antibodies targeting specific cytokines (siltuximab, tocilizumab and anakinra) and other intensive care procedures.
What about a BITE trial? There is a member here who has had great results with Amg509
When my MO found out about the P-PSMA-101 trial, he immediately contacted the PI at Mass General and got me an interview. He felt that since I had significant mets to my pelvis, spine, ribs and other bones, was running out of treatment options, but was otherwise relatively healthy, I would be able to handle the side effects of CAR-T and would be a good candidate for the trial. I passed preliminary screening and apheresis (cell collection) and my T-cells are currently being worked on at Poseida. My upcoming infusion date of 8/16 has become firmer in the past few days. I will be in the multi-dose arm of the trial meaning I will recieve an infusion of cells on Day 0 and again on Day 14 (depending on my response to the first infusion).
My wife received CAR-T at Dana Farber for Lymphoma 30 months ago and was in bad shape at the time. For her, it really was a treatment of last resort. Her Cytokine Release wasn't really bad, just fever and headaches, but the neurotoxicity was quite harsh. Her treatment ran into the start of COVID, so there are many things that are a blur, but she was in-patient for 23 days after a single dose of cells. She is now 28 months free of lymphoma.
Very tough call, HFTB. High risk. Possible but not necessarily probable high reward (>90% response). Durability of response unknown. Survivability of the treatment is high probability it appears.Not quite a moon shot, but for the brave with no other good option it is promising. Cannot advise you personally. What does your gut say? MB
I have seen the envita website before. Very impressive and costly, as it is mostly out of pocket. I know some people who live in the Scottsdale area and are familiar with this facility. Not a viable option.
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considering Pluvicto or Erleada
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Screw Checkmate 650 - the “trials” of trials! 
