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.

Yes, my mom has schedul for October 7th to start collect the cell.

How is your husband doing? Is Rich in T-Cell Rich B-Cell non-Hodgkin Lymphoma so called Richter's Transformation? I have been looking for patients with Richter's but could not find any. I'm in remission for both CLL and Richter's. High risk for Relapse. Plan to try CAR-T if relapse. Would love to contact you if possible.
Thanks!

CAR-T Immunotherapy is the newest treatment for some leukemias and for non-Hodgkin lymphoma. A good overview can be found on the National Cancer Institute website:
https://www.cancer.gov/about-cancer/treatment/research/car-t-cells
and on the Mayo Clinic page for CAR-T
https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/home/orc-20404317
Copy and paste each in your browser to find out more.

My husband had this procedure in May-June 2018. It's very rough, but it worked for him. CAR-T is, as I understand, is not a first option treatment. Before his CAR-T, my husband had exhausted every other treatment option, including R-CHOP chemotherapy (in our city) and an autologous stem cell transplant (at Mayo). But his cancer, T-Cell Rich B-Cell non-Hodgkin Lymphoma, returned, and he was considered terminal in March 2017. But CAR-T passed clinical trials and was approved as a treatment by the FDA that autumn. After CAR-T, however, he is now in remission. Not all patients are eligible for CAR-T. Luckily, my husband's cancer advanced very slowly, and he was still asymptomatic and feeling find, with no other underlying health issues (diabetes, heart disease, etc.) when we went to Mayo's for the pre-tests. A patient must undergo a battery of pre-tests to ensure he or she can withstand the serious, but temporary, neurological and other side effects and the stress the treatment inflicts on the heart, kidneys, liver, etc. My husband had these serious side effects, but none was permanent. CAR-T treatment lasts about eight weeks, including, most often, one to two weeks of in-patient hospitalization when the side effects happen (usually very shortly after the T-cells are reinfused). If the patient is not hospitalized, he or she must go to outpatient clinic every day to be monitored over the course of the treatment. To undergo the CAR-T treatment, a patient must bring along a caregiver who is willing to assist in every way possible and observe the patent--24 hours a day. (Believe me, this was needed!) When the patient returns home, there is usually a week or two of recuperation before the patient feels like returning to work for a sendentary job (like my husband's). This recuperation would be longer if your had a job that required more physical or strenuous work. Also, the patient must return to Mayo's every three months or so for follow-up PETs and blood tests for a year and more. My husband was treated at Mayo's. I can't recommend Mayo's enough. The CAR-T team--everyone from doctors, physician assistants, nurses, physical and occupational therapists, well--everybody!!--was stellar. We will never forget the wonderful people we met. They are the very best!

Hello Bob - my appetite was only bad while I was in hospital - I lost 10 kgs in 4 weeks. I was also put on a high protein, high energy diet & I still use Sustagen as a meal replacement from time to time.
I was prepped for icu but pulled through at the last minute. I’d spent my first months of treatment in Darwin (1000 kilometres) at the top end of the Northern Territory and then because nothing worked on my NHL - DLBCL I was referred to Melbourne and the Peter MacCallum cancer centre in January this year.
I live in Alice Springs, Central Australia so a long way to travel both times. I hadn’t lived in my home for nearly two years 😢

Hello Judy,
I am so glad the hear that you had the opportunity to be treated with Yescarta. I like you had Yescarta treatment, I was infused in August of 2018 for large B Cell Lymphoma that would not react to any of the more common treatments. It sounds like our post treatment symptoms may be somewhat similar. My toxicity levels were very high as well, I spent 1 week in the ICU and another in the hospital recovering. Fatigue, muscle weakness, skin irritation lasted well over a year. (I was 62 years old at the time which could reflect on the length of recuperation.) I struggled with my appetite for quite some time. I found that eating a high protein diet helped.
How is your appetite?
Take care in your recovery.
Bob

Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as well as neurotoxicity. I was very sick for quite some time & I still suffer bone pain, fatigue & muscle weakness…
My cancer was DLBCL & I am in remission now. I had undergone 16 months of chemo/radiation/methotrexate/more high dose chemotherapy and I never had any luck at all. Therefore I was eligible for CAR-T (yescarta)