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

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)

Hi Kevin, my name is Cindy & on 2/2/22 I was just diagnosed with non Hodgkin Lymphoma, I had no idea a skin sore could be a blood disease. How long have you been Know of your lymphoma.?

Hi, my name is Kevin. I have Follicular B­-cell non­Hodgkin's lymphoma. I am currently receiving TTI-622 by Trillium Therapeutics, an experimental drug clinical trial. They are trying to extend me into the Allogene Car T Cell trial on August 11, 2019. I am going through the Colorado Blood Cancer Institute in Denver. I have had several treatments since 2015, including R-CHOP and RICE chemotherapy and an autologous stem cell transplant (at CBCI). I relapsed from my stem cell transplant within 10 months. Everything seems so surreal to me. I am scared and feel somewhat lonely. It helps reading about other people's journey on this site. This is the first time I have accessed information in this manner. Kevin

Hello..Hope your husband continues to get better...Can you please tell me which Mayo Clinic location did your husband attend to? I went to Jacksonville once and it did not go so well.

My diagnosis is CLL/SLL , Hashimoto and Hypogammaglobulinemia. Having frequent infections. I don’t have any treatment yet because the doctor isn't clear if I should begin or not...but Lymphomas are manifesting more aggressively in my case and inflammation episodes cause scary neurological symptoms. Can anyone tell me how do I qualify for Cart T cell therapy or what is the protocol for it? I have extreme allergies and sensitivities to medicines, and everything. I am afraid to take Imbruvica and since the doctor refuses to start me with a lower dose. I react badly to MRIs contrast and even iodine. I am terrified every time they mention any drugs because I could die from medicines reactions...I need guidance on treatment and which doctor I should see aside from my Hematologist to support the immune deficiency (or suspected plasma deficiency) Where do I get this treatment and if anyone knows a the name of a good doctor ???

Thank you so much for responding ...I am from Connecticut and I recently went to see a doctor at Mayo Clinic in Jacksonville FL. I am learning many new things about my condition. It seems that treatment protocols are different in different states. I was ordered a bone Marrow test and a Pet scan at the Mayo clinic..CT has refused previously to do bone marrow. I have severe allergies and terrified to try drugs. I am seeking for Car T cell therapy . Never heard about the Mimicking diet FMD...I am not getting any treatments yet but getting closer as infections are showing up every month. I am trying to get informed and prepared to get the right treatment for me. My doctor in CT says that I wont get Car T cell therapy unless I fail other drugs therapies. CT isn't much advanced , their focus is in the drugs , same as Boston . They are developing customized drugs, but I find those drugs are pretty scary too. I read about Imbruvica and I dont like the fact that their protocols require doctors to start at higher dose. With my sensitivities it could kill me. Also the drug could cause cells to travel and cancer could develop in other areas. It could cause brain bleeding etc...I find the drug is pretty scary and the doctor refused to start me in a lower dose . He wanted one pill with 420 mg. I am sensitive even to over the counter meds,antibiotics ,dyes, foods, histamine and many foods ..My allergies & sensitivities are pretty bad. So I have to be careful...Many Blessing for you too!

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!