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Re: iwasadiver post# 249019

Friday, 10/25/2019 7:26:47 PM

Friday, October 25, 2019 7:26:47 PM

Post# of 689010
Thanks,

My Doctor was working on CAR-T developed at City of Hope and told me he hoped I'd never need them. I happened to meet a man who had stem cells the same day I did, then CAR-T 3 days later. His cells were his own, so he was only coming in every other week at a time when I was still coming in twice a week. He'd come out of remission from a prior stem cell transplant after several years, putting him back into remission and doing stem cells, and CAR-T all using his own cells will hopefully give him a permanent remission. During the administration of the CAR-T's his temperature at one point hit 107, that was the biggest risk, and something my Dr. hoped to never put me through.

It's now roughly 4.5 years since I got the stem cells, I don't know if what they're doing with CAR-T's have advanced that much, but at that time my Dr. indicated the shortcomings were both the high temperature, and the fact that their effect was over a limited period of time. If the disease was eliminated while in the effective period it's great, but if not the disease could recur. I believe they're making strides, but it still has a long way to go.

I could be wrong, but as I gather it, they still need to bring a patient into remission before stem cells and CAR-T can be applied. That remission is often a big part of the problem, especially if you come out of a prior remission. My original oncologist wasn't pushing stem cells, but he had me go for other opinions, I learned that my chances of staying in remission were only about 30% at 3 years without stem cells. He thought if I came out they could put me into remission and do it, but one of the Drs. I spoke with told me a second remission was often much harder, and sometimes impossible to achieve. He told me of a much younger patient than me who'd chosen that course, and he really didn't know if they could save her. I will probably stay on chemo the rest of my life, not because I absolutely have to, but it lessens the likelihood that I come out of remission. Perhaps at some point a new chemo that has lesser side effect will replace what I'm on, but what I've got is an acceptable quality of life with it.

Gary
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