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@nodunk

Had the procedure 6 years ago and relapsed 9 months later. Speaking of cell collection, I had a Hickman catheter surgically implanted in my chest because the veins in my arms couldn’t be used. Believe it or not the device failed the day of cell extraction. Fortunately I had great nurses who were able to extract enough cells through my dried up arm veins. I had no cytokine release problems after the procedure but I believe a terrible reaction to the chemo before the re-engineered cells were reinserted. In hospital for 20 days instead of 10 because my peripheral neuropathy was so bad. After the relapse I found Keytruda a checkpoint inhibitor as my last resort. Merck gave me the drug for free as it was not approved by the FDA as a mercy case. Five years later I am obviously here. Oncologist feels the Re-engineered cells in combo with the checkpoint inhibitor Keytruda gave me more time. Keytruda overstimulated my immune system and is attacking healthy cells causing all kinds of problems in my body. Cytokine release is very common. In this case believe it or not is good. If you don’t have problems like Bob mentioned, the treatment didn’t work and that was me. I think my oncologist knew I would eventually relapse but didn’t mention it as she couldn’t be sure. Anyone with opportunity to get CAR should go for it. There are patients 10 years in. Immunotherapy right now is the gold standard for people like us who were failed by RCHOP.

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Replies to "Had the procedure 6 years ago and relapsed 9 months later. Speaking of cell collection, I..."

Hello @nodunk - I agree with you totally that if Car - T is an option it should be seriously considered as it does work very well in many cases. It is very unfortunate that it is not 100% effective in all cases. It seems like the human body accepts and rejects different things randomly at times, kind of like plants in the garden, no two are 100% alike.

I see in a previous post of yours where you were asking some questions on neuropathy, are you getting some feedback that is helping you find some answers?

I have neuropathy in my feet which I will have for the duration I am told, this, thanks to a side effect of the Chemo. In my case a very small price to pay for which I am grateful.

Take care and fingers crossed for you.

Bob

I had CAR T six months ago and had complete response at 30 day checkup. Six months out still cancer free. Feel like myself again.