"All immunotherapy has side effects, but not all patients experience side effects," says Emily Dumler, a happily married mom of three kids who lives in Shawnee, KS. In 2015, she was the third person in the world to receive a then-experimental form of immune-based treatment for non-Hodgkin’s lymphoma called CAR T-cell therapy. It uses your own modified T-cells to fight cancer.
"It's a spectrum, and some side effects are mild, while others can be pretty scary," she says. "Immunotherapy isn't a walk in the park."
Indeed it isn't. And because you have immune cells throughout your body, side effects can happen almost anywhere.
But it's not all bad. "What patients need to know is that immunotherapy side effects don't last forever, and when they happen, they are treatable," says oncologist Brian T. Hill, MD, PhD, of the Cleveland Clinic.
Different Therapies, Different Side Effects
The side effects that you could face depend on the type of immunotherapy your doctor thinks may be effective, says Lee Greenberger, PhD, chief scientific officer of the Leukemia & Lymphoma Society. "Immune therapies like monoclonal antibodies have a whole different set of side effects than does something like CAR T-cell therapy versus something like an immune modulating drug. And patients need to understand that," he says.
Monoclonal Antibodies
Dumler, who spent more than a month in a Kansas hospital before she was diagnosed with an aggressive type of non-Hodgkin’s lymphoma called diffuse large B-cell lymphoma (DLBCL), started her cancer treatment with six courses of R-CHOP chemotherapy. That's a combination of four chemo drugs plus rituximab (Rituxan), a form of immunotherapy called a monoclonal antibody.
Rituximab targets a specific protein on the cancer cells, an antigen called CD20. Other monoclonal antibodies target different proteins, so their side effects will be slightly different, says Greenberger.
Medicines like rituximab and obinutuzumab, another monoclonal antibody used for a slow-growing type of non-Hodgkin’s lymphoma called small lymphocytic lymphoma, have a laundry list of potential side effects. You could have mild problems like itching or headaches, or more serious problems like chest pain or trouble breathing. If you've had hepatitis B or some other infections, they might come back.
Some newer antibodies are attached to chemotherapy-type drugs to make treatments called antibody-drug conjugates or immunotoxins. One is brentuximab vedotin, a combination of a monoclonal antibody that targets the protein CD30 that's attached to a chemotherapy drug so it finds and kills specific cancer cells with less damage to nearby cells. The treatment's side effects can include nerve damage, diarrhea, and coughing. Other drugs like these are also being tested.
Dumler had no problems with her rituximab treatment. In fact, she went into remission in February 2014. "Rituxan was like getting some water," she says, "but chemo did cause me to lose my hair."
CAR T-Cell Therapy
Her remission didn't last long. In August 2014, her cancer returned. "I was devastated, but I thought, 'OK, what's next?'" Dumler says. For her, it was two attempted autologous stem cell transplants. Both failed, for different reasons. At that point, "My only hope was this experimental CAR T-cell therapy," she says.
CAR T can have serious side effects. These include the so-called cytokine release syndrome (CRS) or "cytokine storm," which causes extremely high fevers and low blood pressure. The treatment could affect your brain and nerves. Symptoms can include confusion and seizures, among other problems. Some people may also get serious infections.
Dumler says she had "just about every side effect there was." She got an allergic reaction while getting the treatment and had to have antihistamines through a vein to counteract it. Shortly after CAR T treatment, she developed CRS, which felt like a "terrible, terrible flu," she says. She also had brain changes and couldn't follow some simple instructions like swinging her legs off of the bed or remembering the names of family members.
But all her side effects were short-lived. "The doctors knew what to do, and I was watched all the time," Dumler says.
Risk vs. Reward
For Dumler, the treatment was a success. She's still in remission. "Every side effect was worth it," she says. She doesn't even really remember the brain changes. "My family and my medical team were the ones who told me about it," she laughs.
If immunotherapy is an option, your doctor will talk to you about the potential problems and benefits in your situation.
"Immunotherapy isn't necessarily going to be right for absolutely every NHL patient, since there are so many factors that go into treatment," Hill says. "But I think patients need to be assured that if they are candidates, we know what to look for and how to treat those side effects. And the treatment could be life-changing."