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

Hello,
My husband’s “new and improved” cells are going to be re-infused in a couple of weeks, He has had CLL for years, in early May—in the midst of selling a house, downsizing to a new build a state away, and on the heels of losing my father to cancer 4 months after he was diagnosed, we learned that my husband has Richters Transformation. His CLL had morphed to an aggressive B-cell lymphoma. Typically the outcome is not good, so the literature says.
Fortunately our new home is in St. Augustine and he sought continued care at Mayo in Jax. But after watching this cancer laugh at RCHOP and GEMOX chemotherapy regimens, continue to grow in size and number, “aggressive” is very real and I’m very thankful and excited for the CAR-T cell therapy…and I have a big knot in my stomach at the same time.
Any tips for getting through this phase as a caregiver?
Denise

I was infused with CAR-T cells this February past. The final stubborn spot on my duodenum was completely obliterated 30 days later. I spent 2 weeks in our local cancer facility being observed for neurotoxicity and cytokine syndrome either of which never materialized. As a caregiver just be prepared to make trips back and forth to the hospital/care centers and hope for the best. This treatment is really quite magical. I started camping and golfing again in May. Still awaiting the return of my immune system - very small price to pay. I am doing an ivig transfusion today incidently.

Thank you for sharing your story, it gives me renewed hope!

Just stay positive. Positivity is the absolute best therapy. I think of it this way: I only have the current moment to live. Future moments may or may not come so I take this moment and live it in joy and happiness.

I am a77 year old woman diagnosed with multiple myeloma. My husband passed away over a year and a half ago. My doctor has recommended me for Car T. I am meeting with doctors about it next week. Any input about outcomes or experiences woyld be greatly appreciated.
Bonnie Tryon

Hi Bonnie. I’m so sorry to read about the loss of your husband. You’ve certainly had some major changes in your life over the past year and a half. And now you have another impactful decision ahead of you.
You popped into the right conversation about having Car-T therapy for your Multiple Myeloma. Other members such as @kirkwilliams2049 @denisej4032 @burchfield have relayed their personal experiences of having this procedure or having been caregivers for family member having Car-T for MM or other illnesses where this therapy is proving to be helpful.
It will helpful to meet with your doctors to get all the particulars. It may be a good idea to have a list of questions for your meeting such as;
Will I need a full time caregiver?
How long will I be in the hospital?
What are the risks vs rewards?
Followup care schedule?

I found a video on the Mayo website that explains CAR-T which might be helpful to at least give you information on the ‘whats and hows’ of the procedure.
https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/home/orc-20404317
I know you’ll have even more questions after your meeting. We’re here to help you over the hurdles…So please let me know what you find out, ok?

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.

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

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).

Hi @4health4bonnie, how did your appointment go? Will you have CAR-T therapy? How are you doing?