Connect with others who understand.

Sign up Log in
Resources
About MyLymphomaTeam
Powered By
Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone Received CAR T-cell Therapy, Sometimes Called CAR T

A MyLymphomaTeam Member asked a question 💭
Napa, CA

After 2 failed treatments, I was sent to a CAR-T specialist. He is recommending this treatment and I'm learning all I can online. I'd love to talk with someone that has gone though it. It's not chemo. It's more like gene therapy adding a receptor to your T cells.

Thanks,
Chris

March 10, 2023 (edited)
View reactions
A MyLymphomaTeam Member

Hi, Chris--just read through all the responses so it looks like you are recuperating from CAR-T. I had CAR-T in October and am feeling very good. My white blood cells are still low so I have to avoid crowds or people who are sick. That's all ok. I walk a lot and that is a treat because I was very weak before the CAR-T.
Good luck!

December 27, 2023
A MyLymphomaTeam Member

Hello JaniceNepo,
Congratualtions on selling your home! I hope the condo does help improve things for you. I am still not sure how replies to email works here, lol, so I hope I'm not repeating too much in this thread.

I did have a bit of a hard time right after CAR-T but now 45 days after I'm feeling good. Energy level is coming back and I'm out every day walking our dog and fiddling in the veggie gardens. My WBC and Neutrophils continue to be low (they have been since my initial diagnosis) and I've started with booster injections to see if they help me get past the Neutropenia. Both were down to just about 0 after CAR-T for a few days. Dr's said it was all anticipated and I was on antibiotics until the counts came back. As for CAR-T itself, I did have fevers starting the following day (no hallucinations!). Fevers were on/off for an over a week and I did receive 2 infusions to deal with CRS. I slept quite a bit. Nurses test you each day and have you write something down, so memory and cognitive skills are tested at least twice a day. It's a tough call to go through with it or not. Now that the hard part is done for me, I'm glad I went through it. Sorry for rambling, feel free to ask any questions.

Chris

August 2, 2023
A MyLymphomaTeam Member

I had CAR-T in March 2022, I had side effects that gave me a 2 day hospital stay. I have been in remission for over 1 year. My last PetScan showed something but it doesn't look like lymphoma. My lymphoma team #mdanderson thinks it muscular injury so I'm to have a follow up scan in June, so we shall see. CAR-T is painless but a little scary but it has been the best treatment for me. Good luck in your treatment.

April 21, 2023
A MyLymphomaTeam Member

I am going to start my sixth cycle of B&R in the middle of MarchI am feeling fine other than a little fatigue I went golfing Monday and Tuesday a little bit tired today I am going to get a scan at the end of March and see how my tumors are reacting to the chemo I am hoping for the best I am not thrilled at all about the side effects of the cart t

February 28

Related content

View All

My Husband Has Follicular Lymphoma. He Is An Alcoholic. Will His Heavy Drinking Affect His Treatment? He Has Been Getting Chemo.

A MyLymphomaTeam Member asked a question 💭
Tionesta, PA

Has Anyone Had Car-t Cell Infusion And Can You Tell Me About Your Experience?

A MyLymphomaTeam Member asked a question 💭
Whiting, NJ

Has Anyone Done The Car T- Cell Therapy?

A MyLymphomaTeam Member asked a question 💭
Illinois City, IL
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in