Did anyone undergo Car-T therapy for B cell lymphoma?

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.

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.

Hi @annberkowitz! You sure got some encouraging news after your Car T therapy! ☺️ I know that feeling of being on top of the world with having a second chance at life. We’re so fortunate to live in a time when Car T therapy, bone marrow transplants and targeted biologics are possible. I can only imagine it will get even better for future generations!
Congratulations to you with your cutting edge of science treatment. How often do you return for followup blood work to monitor your health?

Thanks so much Lori! Yes, we are fortunate to live in the new world of CAR-T. Still in first year so every three months. For me, the 9 month marker will be important because that is when the DLBCL returned. Don't get me wrong, all markers are important but the longer I'm free in the first year the better the outcome will likely be.

We take each of those milestone markers with a new sense of hope. ☺️
I had an Allogenic (donor cells) bone marrow transplant for AML. My first big milestone was 22 months. After that point, statistically the likelihood of a relapse diminishes. The big milestone will be at 5 years. I just had my 4th rebirthday the end of June. I’m not even considering that this isn’t a win! ☺️
Keep on being positive and wishing you only the best news going forward. And thanks again for sharing your story. It will be so encouraging for anyone else undergoing Car T.

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.

Did you have any energy problems. I am so tired I can hardly get out of bed. I’m trying to exercise go to PT twice a week it’s just not coming on for me.

I did not have mouth sores. But I’m still not getting my energy back after 2 1/2 months. How long does it take before we get back to normal? I’m just so tired some days it’s everything I can do to get out of bed and make steps help.