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

@pamcatl
Hi Pam This is my first post on this site. I had Car T Cell treatment on July 22 of this year
I just got my 3 months pet scan and no cancer is showing. I also had the exact same cancer you did and it was very advanced. This was my fourth time having non-hodgkins lymphoma It started when I was 48 went into remission for long time Over the past ten years has returned several times and the last treatment did not work. I am 71 now and I also was very hesitant about this treatment. I did have some side effects. I was only in the hospital for three days and then returned home. It took me till about three weeks ago , around the middle of October,
to really start feeling good enough to go for walks and cook and get out. I had pain, some nausea and few other discomforts, but one day I woke up and the side effects were gone and so far have stayed gone. My oncologist told me that she had heard this before by other patients. You do need someone you can count on to go through this therapy. I am holding on to the thought that I will remain in remission for a long while and hopefully be cured. I have granddaughters to watch get married and great grandbabies on the way. Lots of prayers to you and yours

@pamcatl, I hope you saw the helpful replies you received from other members. Did you decide whether or not to get CAR-T cell therapy? How are you doing?

@kirkwilliams2049

I'm happy for you and also relieved to hear you share that your experience with CAR T was a positive one. Thank you for posting. My 33 year old daughter with Mantle Cell Lymphoma will undergo CAR T after her BTK-i treatment. I'm newer to this site and reading through the posts this week to acquaint myself with members and their helpful insight. Thank you again!

@kirkwilliams2049 This does sound like magic. It is great that you had CAR T option for your condition. Where did you have CAR T transplant done - which Mayo Clinic?
I am 9 months post Stem Cell Transplant for a different condition and still very fatigued, need help with my daily activities with a prospect to start recovering only at 12 months post-transplant. But it is good to know, that if I need additional therapy in the future, CAR T will be my first choice. Best regards and thanks for sharing.

@altabiznet I really restarted all activities immediately. I should note that I spent 2 weeks being monitored in the cancer facility. The only thing I couldn’t do was drive for 3 months. They were afraid of neurotoxicity during that period. I really could have driven. Like I said: Magic!

@pamcatl
I am sorry that you are in such a devastating situation!
I don’t know anything about the treatment you mentioned! However if it is your only chance then prepare yourself for the fight for your life !! May you be blessed with good caring doctors who will help you!!
I have a different cancer of the blood! But I wanted to say I am pulling for you!!
At times in life , we have to trust and rely on doctors who are treating us !! All of us on this portal are sending you encouragement!! And loving thoughts!! Good luck

@kirkwilliams2049

It is great to hear that you had such a positive experience. How was your recovery post CAR T? If you do not mind sharing, for how long did you have post-transplant fatigue, dizziness, other side effects, and when were you able to start doing all regular daily activities, like walking, cooking, driving, computer, etc.?

My wife had DLBCL in her brain stem. She had 5 cycles of Methotrexate chemo and then CAR-T treatment in May ‘25.
She’s had 2 MRI scans to date and she is clear and “in remission”.
She had a low grade fever for 4 days a week after T cell infusion and minor brain “lite heading” feelings but generally is doing very well for an 84 year old.
The stated possible side effects are concerning but hers were relatively minor and the results are amazing. I highly recommend getting the treatment.

I had DLBCL and CAR T had become a last resort after relapse. They did CAR T in February 2023. 30 days later I was clear. It was magical! Depressed immune system is my only side effect. I didn't have any of the scary things like cytokene release or neurotoxicity that they warn you about.

I didn’t have the car t cell transplant yet, but the doctors keep pushing it. I have follicular large B cell non-hodgkins. I wanna hear about other people‘s experiences before I make a decision, but I gotta make it fast. The cancer is in my bones, my spine and my liver.