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.

raemark2010 | @raemark2010 | Sep 20, 2018

Hi! My name is Rae and my husband Mark and I have spent most of our adult lives living and working in west Africa. Last October he was diagnosed there with non-Hodgkin lymphoma and we were evacuated to Mayo in Rochester. After two types of chemo didn't work he qualified for CAR-T therapy in the spring of 2018. It was pretty rough sledding for a week or so, but we had been warned and our wonderful care team got us through it, so it's all good! : ) His first two PET scans were negative. The next one is next month and I'm trying to not dread it and just trust God to take care of us day by day. And I'm trying to remember that each day is already a bonus. Trying is the operative word. : )

raemark | @raemark | Sep 20, 2018

I'm Mark from Iowa. But normally we live in West Africa. We were medically evacuated October '17 when diagnosed with non-Hodgkin lymphoma. We were blessed to go to Mayo Clinic immediately. I had the "Double Hit" type; 2 different regimens of chemo didn't work. Bleak! Thankfully, though, I qualified for CAR-T! T cells were re-infused April 17, '18. Side effects severe, in the hospital for 10 days; virtually no memory of 1 week! Latest PET scan: no cancer. Yes, worth it! Wife best caregiver ever!

Colleen Young, Connect Director | @colleenyoung | Sep 20, 2018

In reply to @annmillercarr "My name is Ann. My husband David was a CAR-T patent at Mayo's-Rochester in May-June 2018...." + (show)

Hi @annmillercarr, welcome to Connect. What was your husband treated for? How is he doing now?

Ann | @annmillercarr | Sep 20, 2018

My name is Ann. My husband David was a CAR-T patent at Mayo's-Rochester in May-June 2018. I would be glad to discuss the CAR-T experience with any prospective Mayo Clinic CAR-T patients or caregivers.

View More View Less

Please sign in or register to post a reply.