CAR-T Cell Therapy: Introduce yourself and connect with others

I have been approved for Car T. They are collecting T cells Jan 30. I am tentatively scheduled for the infusion March 24. Feels like its the right thing to do, and I am hoping for mild symptoms. I am going through different emotions, but I dont see much choice.

Hi, I am new to CAR T, I have my consult schedueled, but am very apprehensive about all the side effects I read about and being in the hospital, as it all seems so terrifying... I am also concerned about the after care and what that will be like and for how long you need 24/ 7 care? right now I live about 45 min from the hospital and was wondering if i will need to be closer after treatment. How long after infusion did you feel like yourself? Are you sick the whole time after infusion or can you move about and do things? Thank you

Welcome to Connect, @shop516 I’m so glad you joined the forum. It can feel pretty lonely and overwhelming going into a procedure such as this without anyone to talk about the experience. We have a growing number of CAR-T members who will be able to answer some of your questions. I’m going to tag fellow recipients or caregivers @kirkwilliams2049 @denisej4032 @burchfield to get you started…

I don’t know where you’re having your procedure but I do have some information for you from Mayo Clinic. It’s a guide for caregivers and patients regarding bone marrow transplants and CAR-T. Take your time and pursue the entire site. If it doesn’t open in CAR-T, scroll down past Autologous and Allogenic transplants. It’s right after those:
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#CAR-T
If you don’t mind sharing, what illness led you to requiring CAR-T?

I was diagnosed with Large Diffuse B Cell Lymphoma(LDBCL) in 2015 and was treated to remission with RCHOP. I relapsed 2023 and was treated with 3 rounds RGDP which damaged my kidneys. After this treatment, a hot spot on my duodenum persists(Deauville 5). I then began a clinical trial for CAR-T therapy February 20, 2024. 30 days later I was clear. I will be having my 1 year PET scan February 13. Still feeling pretty damn good!

I was diagnosed in 2005 with large Diffuse B cell, had RCHOP and was considered " cured" after my 5 year check in.
Then in 2020 was dsiagnosed with Follicular Lymphoma, put on watch and wait for about 1 year and than treated with B & R.
I was in Rermission almost 2 years and relapsed, had Rituxim and GenOX but unfortunatley that did not put me in remission, so Here I am again.
My Dr recommends CAR T , but its scary and a bit overwhelming. I never want to be a burden on
anyone, I Hate asking for help and it feels like all I do is have to ask for help these days....
but, Im glad to see lots of success stories with CAR T, it gives me hope.

You may have seen from this forum that I did CAR T last February. I spent 2 weeks in hospital for observation. I had zero side effects. Along the way I met numerous wonderful people - mostly doctors and nurses. For the most part I am feeling great. My body has definitely changed but in a highly probabilistic world, I put it down to the entropy that comes with age. I am going on 76 and I kid my oncologist that CAR T has definitely aged me - “I feel like I am almost 60!” Anyway I feel like this past year is a year that I should not have had - a year of borrowed time. And while I firmly believe in “the next life “, I am extremely grateful for it. I still have a lot to pass on to my grandchildren and now I have the time.

Thank you for sharing your story, i am glad you are doing well.
It does seem like the way to go, but the unknown is always scary.
And the aftercare can be a burden on family and friends.

Well other than 2 weeks in hospital, there was no after care. They didn’t want me driving for 2 months due to the possibility of neurotoxicity. And I am still immune compromised. But neurotoxicity never happened. It is quite rare and is really only a threat if the lymphoma has migrated to the brain - as I understand it. And with respect to my immune system, I just mask up when I go out in public which is not a big deal. This is also quite rare btw. Just remember, positivity is the best therapy.

Hello everyone, I am from Canada A town just north of Toronto and last summer I was diagnosed with Non-HODGKINS lymphoma and Large Diffuse B Cell Lymphoma, right in the middle of marathon training to have qualified for Boston. For the most part R-CHOP chemo was successful in Most of my body, but it was not successful in my hip and groin area. I qualified for CAR-T in December , had my cells extracted on January 20 and and I begin my treatments on February 15. As some of you may know, CAR-T is a second line of defence up here in Canada. What I am really struggling with right now is what type of diet to commence on the 15th and onwards, do I follow a strict keto diet or do I take the pesco vegetarian route? All the research I’ve done seems to be pretty much split in the middle, The keto crowd saying that all the carbs in the PVG will cause a glucose rise and cancer loves glucose. Where the PVG crowd is totally anti Keto. Prior to my diagnosis, I was very successful in maintaining my fitness level and my weight on a Mediterranean diet. If anyone has stories that combine a certain type of diet and lymphoma with CAR-T treatment, I would be very interested.

Thank you for your story, I will be at PMH commencing on February 15.