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?

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

@ntsimpson

Dear Bonnie,

My husband was in a clinical trial for Car T for multiple myeloma and CLL patients on November 5. This trial took place at Princess Margaret Hospital in Toronto Canada. The first thing I’d say, is that clinical trials are awesome. You get care over and above any standard care that I have ever seen. The second thing I’d say is that this therapy has been a miracle for my husband. He had come to the end of the line for any traditional treatments, and this trial was the only thing on the horizon, given the fact that he was getting sicker every day with a relapse. While we do not know how long it will last, right now there’s no residual disease to be found and this is in less than two months. He had his Car T therapy on November 5 with no side effects in the hospital or out of the hospital. None of the side effects that we were worried about, like CRS. The only thing that he experienced was fatigue for the first month. And after that, he started feeling stronger and stronger every day. We are two months post CAR T and my husband is out on the tennis court again.

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This is very encouraging. What were his numbets before car t? Were his monoclonial proteins very high? Do you know what drug they used?
Thank you for taking the time to write.
Bonnie Tryon

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I’m not sure what my husband’s numbers were when he received his new T cells, without digging deep on line. The clinical trial my husband is in (as he goes back for testing for the year) is what I have copied below. The research was done by Princess Margaret. The company they partnered with is a Japanese company. Maybe you have to try conventional treatment first, if you were just diagnosed.

Study of TBI-2001(Autologous CD19 Specific Chimeric Antigen Receptor (CAR) Gene-transduced T Lymphocytes) for Relapsed or Refractory CD19+ B-cell Lymphoma, CLL/SLL

Description
This is a Phase 1/1b, open-label, dose-escalation study to evaluate the safety and the efficacy of anti-CD19 chimeric antigen receptor (CAR) (TBI-2001) for relapsed or refractory CD19+ B-cell lymphoma Chronic Lymphocytic Leukemia (CLL), Small Lymphocytic Lymphoma (SLL).

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