By George Bailery & Jennifer Gillette LMSW
According to the National Cancer Institute Dictionary, CAR-T Cell Therapy is a type of treatment in which a patient’s T cells (a type of immune system cell) are changed in the laboratory so they will attack cancer cells. T cells are taken from a patient’s blood. Then the gene for a special receptor that binds to a certain protein on the patient’s cancer cells is added in the laboratory. The special receptor is called a chimeric antigen receptor (CAR). Large numbers of the CAR-T cells are grown in the laboratory and given to the patient by infusion. CAR-T cell therapy, also called chimeric antigen receptor T-cell therapy, is being studied in the treatment of some types of cancer.
George Bailey had undergone CAR-T Cell Therapy for his Stage IV Follicular Non-Hodgkin’s Lymphoma. He is currently 59 years old. He has agreed to share with us what this experience was like for him.
Jennifer: Can you, as a patient, describe what this CAR-T Cell Therapy was like for you?
George: I was diagnosed in early 2017 with Stage IV Non-Hodgkin’s Lymphoma. My initial treatment was 16 weeks of R-CHOP chemo. The chemo appeared to be successful for several months. However, the disease returned in late 2017. I then started my second chemo regimen, RICE, hoping to “knock” the cancer back and prepare me for a transplant. However, the cancer came back too quickly, and this made transplant a less viable option. At that time, my doctor explained to me that he thought another choice was to try CAR-T Cell Therapy. The research had been limited, with only 101 people in the recently completed trial, but they were seeing promising results. I was to be the third person at Karmanos to receive this treatment since the FDA’s approval in October of 2017. I was warned that there could be extreme side effects such as Cytokine Release Syndrome. This effect can be caused by a large, rapid release of cytokines into the blood from immune cells affected by the immunotherapy. The release can cause a systemic inflammatory response. If severe, it can cause dangerous damage to the brain. With the education I had received, this seemed to be the path I needed to take.
In preparation for this CAR-T procedure, I went through leukapheresis in a chair for six hours. Blood was taken out of one arm, filtered out the T cells, and then reinfused me in my other arm. It was boring and uncomfortable, but not painful. My T cells were then sent via a medical delivery service to a Kite Pharmaceutical lab in Los Angeles, CA to be modified. The entire process took three weeks. Two weeks later, I went through several “low dose” chemotherapy rounds to prepare my body for the introduction of the modified T cells. This preparatory chemo did not have the same effects of other chemos I had received, and I was able to go about my business. Two weeks later, I checked into the hospital. The next day I was infused with the modified T cells from a small IV bag that looked like it had three tablespoons of soup in it. The infusion was finished in about five minutes. It was mandatory that I stay in the hospital for two weeks. My wife stayed with me in the room for most of the first week to monitor for signs of modified behavior, which would indicate a reaction to the treatment (Cytokine Release Syndrome). Luckily, I had minimal side effects. I was a little achy in the afternoons and had a mild fever of 101° in the evenings. Then, in the mornings, I would be fine. Some patients had more pronounced problems; I did not. Finally, due to concerns with Cytokene Release, we had to stay within a few minutes of the hospital for an additional 30 days. One month after the treatment, I had a follow-up PET Scan. No cancer! I recently had my one-year PET Scan and remain clean.
Jennifer: What were some of the hardest things to experience with the treatment?
George: It was hard on my family. I had to be off work for two months, could not drive, could not ride a bike, and could not swim. I could only take walks.
Jennifer: Did it make much of a difference with your symptoms/disease?
George: Yes, I have been cancer free since then.
Jennifer: Were there any after effects that people should be aware of?
George: There are lots of unknowns about long-term effects because it is so new. I have had to go through three series of all inoculation, (baby shots). My immune system remains more compromised than that of your average person.
Jennifer: Is there anything you wish you had known before-hand that you know now?
George: No; my wife and I were well versed on the subject. We did our homework. My wife was a great advocate standing beside me; and I had a very supportive employer.
Jennifer: Would you recommend this procedure to others?
Jennifer: What has helped you the most to cope with everything you have experienced?
George: Staying positive. No one wants to be around a complainer. Educate yourself. Read; ask questions. Find other people with similar experiences.
Double check and validate. My wife and I received multiple opinions from several doctors and cancer centers. Be your own advocate. Don’t be shy. Pray.
Jennifer: Are there any other words of wisdom you want to share with others?
George: Go into the process in the best possible shape. Make sure you are comfortable with a second opinion so you have no regrets. Walk a lot, keep moving, and be your own advocate.
Don’t worry about other’s feelings. Get second opinions. Ask others to wash their hands if they are caring for you. Ask for things to be comfortable during your hospital stay. Don’t be shy; voice what you need.