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CAR-T Cell Therapy: Introduce yourself and connect with others
Welcome to the CAR-T Cell Therapy group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who have experience with CAR-T cell therapy or are caring for someone on CAR-T cell therapy. There are so few people who have experience with this new cancer immunotherapy. Together we can learn from each other, support one another and share stories about living with cancer and coping with the challenges of treatment.
Let’s chat. Why not start by introducing yourself? When did you or your family start therapy? How are you doing today?
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HugInterested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
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@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!
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1 Reaction@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.
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1 ReactionI 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.
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2 ReactionsI 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.
@ksandusky86 It sounds like your current hematologist oncologist isn’t willing to discuss any potential alternative treatment options with you. It never hurts to get a 2nd opinion so that you know you’re getting the best care for your diagnosis whether it’s for traditional treatments or if you’re interested in CAR-T therapy.
When looking for information on CAR-T, make sure you contact a larger, research/teaching hospital that does these on a regular basis.
From personal experience I know Mayo has hematology and stem cell/CAR-T transplant departments second to none. If you’re interested in being seen at a Mayo Clinic location, here is a link to get you started for requesting an appointment. http://mayocl.in/1mtmR63
Campuses are in Rochester, MN Phoenix, AZ or Jacksonville, FL
The link will take you to Mayo’s home page where you can initiate the request. You don’t need a physicians referral but it can be helpful.
Has the Acalabrutinib been helpful in keeping your CLL under control?