Woman examines a T Cell

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

Editor’s note: Recently, we asked Robyn Stacy-Humphries, MD about her experience having undergone CAR T-cell therapy to treat her diffuse large B-cell lymphoma. This is her story, in her own words.

In 2011, at age 48, my life was going well. My career had taken off as a physician and I was a partner in a large multi-specialty radiology private practice. My three teenage children were thriving, as was my marriage. Then, one evening, I felt a lymph node above my clavicle and because of my background in oncologic imaging, I knew that this was an ominous finding, typically associated with cancer. 24 hours later, I stepped off a CT scanner, looked at the images, and knew my diagnosis—lymphoma. A few days later, pathology confirmed that I had an aggressive lymphoma called diffuse large B-cell lymphoma.

Five years later, after 14 rounds of chemotherapy with 16 different poisons, multiple lymph nodes and bone marrow biopsies, three central venous catheters, two lumbar punctures with intrathecal chemotherapy, complete hair loss twice, septic shock, broken arm, autologous bone marrow transplant, and head and neck radiation, I stepped off a PET/CT scanner, glanced at the images and sobbed. My cancer was back for the third time. Due to multiethnic heritage, I had no match for an allogeneic bone marrow transplant and without treatment, my life expectancy was only six months.

Learning about CAR T-cell therapy

Being a physician has some advantages. I had been following the lymphoma literature and had read about a treatment called CAR T-cell therapy. It had worked for 12 patients. My husband and I researched open clinical trials for CAR T-cell therapy using www.ClinicalTrials.gov and we were lucky that we eventually found an open spot in Ohio at the James Cancer Center. I had hope.

Compared to autologous bone marrow transplant and chemotherapy CAR T-cell therapy was much easier. First, my T-cells were harvested using something called apheresis. It is similar to giving platelets. Blood is removed, the cells filtered out and the blood returned to the patient. My T-cells were then sent to a lab to be genetically altered. A CD19 protein, called a CAR, was inserted into the T-cells so that the cells would bind with my lymphoma cells and destroy the cancer.

Due to the fact that my trial was early in research, the cell modification was delayed for four months, During that time, my oncologists used a bridging chemotherapy—Ibrutinib which was an off label use and very successful. It put my disease in remission while waiting. However, the medication had to be stopped four weeks prior to therapy, and my disease returned with a vengeance.

The side effects of CAR T-cell therapy

Like all patients who receive CAR T-cell therapy, I had lymphocyte depleting chemotherapy prior to my CAR T infusion. In my case, this was one day only but most people get three days with two agents.

The CAR T infusion was very anticlimactic. 600 million CAR T-cells were in 10cc of fluid and the infusion was complete in less than 10 minutes. As one of the first patients getting the therapy, my room was filled with staff to watch the event. I think they were disappointed.

Within 24 hours of the infusion, I had a low-grade fever, fatigue, and body aches. Also, my lymph nodes started melting away like ice cubes. By day five, I developed a high fever—which occurred very suddenly—and low blood pressure. I was admitted to the hospital for three days and this was classified as grade 2 cytokine release syndrome. In the trial, I had to stay within 30 minutes of the hospital for 30 days and had every other day blood work. Overall, I felt alright but just very fatigued. I was able to return to work four weeks after CAR T-cell therapy (I was out for three months with the autologous stem cell transplant). Three months after therapy, I became open water dive certified and was working full time. Four years later—I feel great and I hope that I may be cured.

Research and see out experts!

At work as a physician, I have always been empathetic but obviously, having cancer three times changes you as a person. I know that I am able to communicate more effectively having been through so many treatments.

I administer a support group for CAR T-cell patients and their caregivers. I tell everyone to try to get CAR T as soon as they can, I hope this therapy will become a first-line treatment. Twenty years from now, I think much of our cancer therapy will be viewed as barbaric. In my opinion, harvesting a person’s own immune system is the best way to treat cancer. I also encourage everyone to be their own advocate, which may require researching their own trials or seeking out oncologists who are experts in their disease.

Never, never, ever give up.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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