Like many other retired snowbirds, Ed St. John and his wife, Marge, headed to Florida to get away from St. Louis’ winter temperatures. After they arrived, Ed came down with a cough and sore throat. It seemed like just a cold at first, but when Ed began having trouble swallowing in February 2016, they cut their trip short and returned home to see Ed’s primary physician.
While the couple had reason to be concerned, the diagnosis was not clear cut. It took several months for specialists to determine Ed had an aggressive and fast-growing type of blood cancer called diffuse large B cell lymphoma (DLBCL). This cancer can arise in lymph nodes or outside of the lymphatic system, in the gastrointestinal tract, testes, thyroid, skin, breast, bone, or brain. In Ed’s case, an initial CT scan showed an enlarged thyroid, inflammation in his lungs and adrenal glands, and a swollen lymph node on the right side of his neck.
It was a diagnosis that just a few years ago could have been a death sentence. Not only is Ed alive today, but he is in remission thanks to a groundbreaking treatment that genetically alters patients’ cells to recognize and attack cancer.
“I consider it a miracle that I am still here,” Ed says. “It has changed my life. The small things don’t really matter to me anymore.”
Ed received the treatment, called CAR-T cell therapy, in October 2016 as part of a clinical trial at the Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine. The FDA approved the therapy, called Yescarta, a year later. Siteman is one of the first centers nationwide to offer the new immunotherapy.
The treatment is for adults with certain types of large B-cell lymphoma who have not responded to or who have relapsed after at least two other kinds of treatment, such as chemotherapy and bone-marrow transplants. Lymphoma is a blood cancer that begins in cells of the immune system.
The therapy, developed by Kite Pharma, requires removing millions of a patient’s T-cells, a type of white blood cell that is critical to the immune system. These cells are frozen and shipped to California-based Kite, where they are genetically engineered to identify and kill cancer cells.
The reengineered T-cells, called “CAR-T cells,” are then frozen again and shipped back to the hospital to be dripped into the patient. The turnaround time is about 17 days.
“The immune system can’t always see cancer cells as threats—the T cells are sometimes blind to them,” says John F. DiPersio, MD, PhD, the Virginia E. and Sam J. Golman Professor of Medicine in Oncology, director of the Division of Oncology at the School of Medicine, and deputy director of Siteman Cancer Center. “By modifying these T cells, we tell them what to look for. Now they can go right to the lymphoma and eliminate the cancerous cells.”
Because the therapy induces a heightened immune response, there can be a range of side effects, from fever and shortness of breath to kidney failure and seizures. Many of the side effects are manageable,
but some are severe and can be life-threatening. As a result, only a small number of hospitals with extensive experience handling the side effects of blood cancer treatments, including bone marrow transplantation, were allowed to administer the clinical trials. Siteman was one of them.
Ed’s decision to participate in the trial followed months of unsuccessful chemotherapy, including three different bouts of three-day hospital stays with continuous 56-hour infusions. Given the failure of these therapies, Ed’s son wondered how much longer his father could survive. So he asked for a prognosis from Ed’s doctor, Nancy Bartlett, MD, holder of The Foundation for Barnes-Jewish Hospital’s Koman Endowed Chair in Medical Oncology. She estimated six months.
Given the bleak prognosis, Dr. Bartlett discussed the upcoming CAR-T trial with Ed. Although the treatment was tough, she said Siteman had drugs to counter some of the side effects.
“It was overwhelming, but I thought back to my son’s conversation with Dr. Bartlett,” Ed says. “I really didn’t have any other choices.”
On Oct. 3, 2016, some of Ed’s white blood cells were flown to California by special courier. The cells were reengineered and infused back into his body Oct. 26 at Siteman. He was discharged two weeks later in time for his 49th wedding anniversary. “I felt good. My lungs cleared up. I really could tell the difference,” Ed says.
His return to health means he can focus on Marge, who has been battling ovarian cancer for the last six years. At one point they were even getting chemo at the same time at Siteman.
“I feel like I’ve been given a reprieve to take care of Marge,” Ed says. “If I hadn’t made it through, I don’t know what would have happened.”
A PET scan on Nov. 23, 2016, the day before Thanksgiving, showed Ed was in remission and additional scans every three months show the same results. He is hoping there will soon be a CAR-T trial to help Marge and other women with ovarian cancer.