Community Spotlight: Laurie’s Experience with CAR T-Cell Therapy

Editor's note: Blood-Cancer.com recently sat down with Laurie Adami, who received numerous treatments for her stage IV follicular lymphoma, before having undergone CAR T-cell therapy.

Tell us a little bit about yourself and your blood cancer journey.

I was diagnosed in 2006 with stage IV follicular non-Hodgkin lymphoma, an incurable malignacy. At the time, I was 46 years old, the President of a financial software company and I had a young son who was in kindergarten. Over the next 12 years, I was continuously in treatment and unfortunately unable to achieve a complete remission from any of the treatments until treatment number 7, CAR T-cell therapy. The best I achieved prior to CAR T was stable disease. My 6 treatments before CAR T were R-CHOP; Phase II trial of R-Vorinostat; R-Bendamustine; Bexxar; Phase I trial of R-Idelalisib (Zydelig); and Gazyva.

You went through an extensive number of treatments. What ultimately led you to participate in a CAR T-cell therapy clinical trial?

I first heard about CAR T in 2012 and told my oncologist that he needed to keep me alive until CAR T was available for my disease. I was struck by how elegant it was that CAR T would use my own immune system to defeat my cancer, as opposed to the manmade agents I had previously received. By 2018, I had exhausted all of the available options and had a rapidly advancing disease which had infiltrated my kidneys. It was estimated I had over 8 pounds of cancer tumors. Just in time, I was informed by my oncologist that a Phase II CAR T trial was opening for follicular NHL. I would be one of five patients in the cohort at UCLA and would be the first to participate.

What was the CAR T-cell therapy procedure like for you?

Going into the hospital to get my CAR T-cells back, I knew that I was at high risk for side effects as a result of the bulkiness of my disease. I was also out of options and really had no other choice. I felt great confidence in the way CAR T works. Ultimately CAR T was successful for me and I remain in complete remission two years after receiving my CAR T-cells back.

Did you have any side effects from CAR T-cell therapy? How did they compare to the side effects from the other treatments?

The side effects for CAR T can include cytokine release syndrome (CRS) and neurological issues. Before I went in to get my genetically modified CAR T-cells back, I had spoken to several people who had previously had CAR T. The only side effects they reported to me were fevers and a little mental confusion. Unfortunately, that was not my experience and I had grade IV CRS as well as brain seizures and I was placed in a medically induced coma for over a week. Oncologists believe my side effect severity resulted from the bulkiness of my disease. In the 2 years since I participated in the trial, there are several new medications that are used upfront to minimize or eliminate the side effects I experienced and in some cases, CAR T is being delivered in an outpatient setting.

The side effects I experienced after CAR T were thankfully short-lived and I don’t seem to have any long term side effects. I had a variety of side effects from the six previous therapies I had and sadly, some have been long term.

What advice you would give someone who is considering CAR T-cell therapy as a possible treatment route?

I would encourage people to read about CAR T and speak to their oncologists. It is currently approved for 3 blood cancers: acute lymphoblastic leukemia (ALL), diffuse large B cell lymphoma (DLBCL), and mantle cell lymphoma, but there are dozens of trials for all kinds of other blood cancers taking place all over the world. CAR T for solid tumor cancers is also undergoing research.

Any other comments, tips, or words of wisdom you would like to share?

I would encourage all patients to be as patient active as they can be to seek out CAR T and see if they are a candidate for it. I wish it had been available for me earlier in my cancer journey as I could have eliminated the cancer without going through the other heavy-duty treatments I experienced.