In a battle with a rare and aggressive cancer called “double-hit” lymphoma, James “Milton” Wilkins struck first – or rather, his grandson did, with an accidental elbow to Wilkins’ abdomen. This led to a speedy diagnosis that gave him a fighting chance.
Wilkins, 64, was first seen by doctors near his home in Sylacauga, Ala. But as the cancer progressed, they referred him to the O’Neal Comprehensive Cancer Center at UAB, the only place in Alabama where he could receive an advanced immunotherapy treatment called CAR T-cell therapy. In just over six months, he went from a grim prognosis to remission.
In June 2019, Wilkins began having occasional pain in his lower abdomen that felt like a knot was forming, but he wasn’t concerned at first. He had a checkup two months earlier, and his bloodwork was normal. He had almost no family history of cancer.
But later that month, things changed when he was watching TV from the recliner with his grandson. “My grandson went to sit up and just connected with his elbow right where I had been hurting,” Wilkins says. “The pain was unbearable.”
He went to a nearby urgent care clinic, and they recommended a CT scan immediately. “They saw a mass in my lower abdomen between the size of a grapefruit and a cantaloupe,” Wilkins recalls.
Following a biopsy test, Wilkins was diagnosed with non-Hodgkin lymphoma. “I wasn’t familiar with lymphoma, but my wife told me it was cancer, and we learned it was also a fast-growing type,” he says.
Lymphoma is cancer that begins in immune system cells. There are two main types: Hodgkin and non-Hodgkin. Non-Hodgkin lymphomas are more diverse and more dangerous. They are generally categorized as either indolent (slow-growing) or aggressive (fast-growing).
Three Rounds of Chemo
“This totally disrupted life as I knew it from the beginning,” Wilkins says. He received his first round of chemotherapy in Sylacauga. “That just made the cancer mad; it came back with a vengeance.” He received two more inpatient chemo treatments in August and September. By then, two new golf-ball sized tumors appeared on his biopsy scars.
Wilkins was referred to lymphoma expert Amit Mehta, MD, at the O’Neal Comprehensive Cancer Center at UAB. A third, even more aggressive round of chemo at UAB didn’t help, leaving Wilkins dehydrated and leading to 24 hours in the hospital to receive fluids.
“Milton had progressed to stage 4 cancer, and we were running out of time,” Dr. Mehta says. “He had double-hit lymphoma, a rare type of B-cell lymphoma. His cancer had a genetic component, and it was particularly resistant to chemotherapy.”
Fortunately, UAB Medicine had an innovative treatment option for him called CAR T-cell therapy, or CAR T. T cells, a type of immune cell, can fight the cancerous B cells (another type), but they need help.
CAR T-Cell Therapy
CAR T-cell therapy involves harvesting a patient’s T cells and modifying their genetics to make the cells search and destroy cancer cells (CAR stands for chimeric antigen receptor, which is the modified part of the cell that recognizes cancer). The modified cells are put back into the patient with a process known as infusion. Prior to the procedure, patients undergo three days of chemotherapy designed to lower the normal count of T cells to make way for the altered cells.
Providers that offer CAR T services can only work with cell therapy labs that harvest T cells and administer cell infusion according to strict federal standards. UAB Medicine was among the first group of hospitals certified, thanks to its well-established Blood and Marrow Transplantation & Cellular Therapy Program and because Dr. Mehta and colleagues participated in clinical trials that led to commercial approval of the therapy.
According to Dr. Mehta, the clear effectiveness of CAR T has made it a second-line treatment option after chemotherapy. The chances of cancer responding are about 70%, and of those, half remain cancer-free for one year or more. Almost all patients with lymphoma that is resistant to chemotherapy are candidates for the treatment.
Patients accustomed to chemotherapy may not anticipate the unique side effects of CAR T, which occur in two groups: those related to cytokine release and those related to the nervous system. The body reacts to new T cells by releasing natural chemicals called cytokines into the blood, which can cause symptoms such as fever, headaches, and nausea. The nervous system also may be affected by T-cell activity, resulting in symptoms such as loss of coordination, changes in consciousness, and trouble speaking. At UAB Medicine, a staff that specializes in infusion-specific side effects cares for patients at the 16-bed inpatient bone marrow transplant (BMT) facility until they are cleared to go home.
Keeping Hope Alive
Wilkins admits that his first impression of Dr. Mehta was “not great,” although he laughs when he remembers, “Well, it was probably because he was being honest – and it sounded like I was close to dying.”
He quickly learned to trust Dr. Mehta and the BMT team as they explained the unique hope CAR T offers and worked to obtain insurance approval. “It sounded great to us, but in stage 4, anything that gives you hope sounds great,” says Wilkins’ wife Cindy.
Wilkins was only the second patient treated with the new therapy, so the insurance approval process was difficult. A single infusion of CAR T costs about $400,000. “Dr. Mehta and the BMT folks had worked well with our physicians back home and with our insurance companies to get us approved within a week,” Cindy says. “And we were so relieved, because the next closest place for this therapy was Texas.”
Wilkins was vulnerable to the full brunt of side effects from what he describes as his “super-cells” attacking the cancer. Cindy was asked to watch for subtle changes in his behavior that others might not notice while her husband recovered in the BMT unit. He ran a high fever for the first few days, but this was followed by a week of troubling neurological symptoms, including loss of motor control and a general lack of awareness.
Roll In, Walk Out
The Wilkinses leaned on their Christian faith for hope and perseverance during these days. Cindy trusted the purpose behind the sequence of events, and Milton resolved to keep a positive outlook. “I believe that God gives man the knowledge behind new treatments, so I continued to see God at play, even in the tough times,” Cindy says. “Our prayers and the prayers of our church family lifted us up.”
The BMT staff kept Cindy fully updated on her husband’s condition around the clock. “They were always available, and when his condition worsened, nurses were set up outside his room for intense monitoring,” she says.
Wilkins came out of his neurological fog in five days, and the first sign of improvement came while he was still in the hospital, when the lumps on his biopsy scar disappeared. Wilkins was rolled over to UAB Spain Rehabilitation Center to regain his motor skills, and a week later, he walked out. By Jan. 3, 2020, his cancer officially was in remission. Back home in Sylacauga, he began a series of immunotherapy treatments.
“Dr. Mehta is really a hero to me,” Wilkins says. “The way he kept us fully aware of everything that was going to happen gave us some confidence that it was all going according to plan, and it turned out that CAR T was really the ticket.”
Wilkins has expressed a desire to talk with other patients who are candidates for CAR T to share his testimonial, when it is safe for him to do so. For now, he and Cindy eagerly await his next appointment at UAB Medicine, at which time he could be deemed officially “cured.”
Click here to learn more about blood and bone marrow transplantation at UAB Medicine.