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

Posted by Colleen Young, Connect Director @colleenyoung, Sep 17, 2018

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?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Lori, Volunteer Mentor | @loribmt | Oct 9 10:34am

In reply to @4health4bonnie "I just wanted to report that I am doing so well after my Car T Carvykti..." + (show)

@4health4bonnie What a wonderful update!! 💃💃💃
So happy to hear you’re almost ‘back to normal’ after 6 months! That’s fantastic and a testimony to the amazing breakthroughs in medical treatments. I know you were so concerned about having undergo CAR-T therapy but what a wonderful outcome for you!
Reaching through the screen for a big hug!! I know that feeling of elation! How often do you have follow-up appointments??

kirkwilliams2049 | @kirkwilliams2049 | Oct 9 10:44am

Magical isn't it. I am 22 months out from CAR T and feeling great. My last IVIG infusion was in April or May(time flies. Note that I took a reaction to my first IVIG. Subquently they loaded me up on antihistimines, anti nausea drugs and prednisone. I have not reacted since. I understand that this is very rare. Good luck and best wishes for continued good health!

4health4bonnie | @4health4bonnie | Oct 9 6:22pm

In reply to @loribmt "@4health4bonnie What a wonderful update!! 💃💃💃 So happy to hear you’re almost ‘back to normal’ after..." + (show)

@loribmt Every two months, although I am starting infusions monthly for low IGG. (IVIG). Thank you for your suport.😊

ksandusky86 | @ksandusky86 | Oct 18 10:06am

I'm interested in becoming a CAR-T therapy patient. I asked my doctor about immunotherapies and he was dismissive. He has prescribed acalabrutinib now. I don't know where to even start to find CAR-T therapy, let alone have any idea if it's even feasible for me. Can anyone offer any advice?

Lori, Volunteer Mentor | @loribmt | Oct 18 1:39pm

In reply to @ksandusky86 "I'm interested in becoming a CAR-T therapy patient. I asked my doctor about immunotherapies and he..." + (show)

@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?

pamcatl | @pamcatl | Oct 31 9:25am

I didn’t have the car to 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.

kirkwilliams2049 | @kirkwilliams2049 | Oct 31 10:03am

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.

aalietz | @aalietz | Oct 31 10:35am

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.

Alta Net | @altabiznet | Nov 1 1:13pm

In reply to @kirkwilliams2049 "I had DLBCL and CAR T had become a last resort after relapse. They did CAR..." + (show)

@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.?

hanya | @hanya | Nov 1 1:56pm

In reply to @pamcatl "I didn’t have the car to cell transplant yet, but the doctors keep pushing it. I..." + (show)

@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

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