If you have lymphoma and your treatment includes immunotherapy, you know that it uses your immune system to fight cancer. It can boost your immune system to make it more aggressive or “train” your immune system to attack cancer cells.
“Immunotherapy can offer hope when standard treatments aren’t effective, or when they’re not an option for a patient,” says Carlos Ramos, MD, a hematologist/oncologist at Houston Methodist Hospital in Texas.
But it isn’t a miracle cure. “We’re really excited by immunotherapy, but it doesn’t work 100% of the time,” says Catherine Diefenbach, MD, clinical director of lymphoma at NYU Langone Perlmutter Cancer Center in New York. Equally important? “Immunotherapy can cause side effects,” Ramos says. “It’s important to know that before you begin treatment.”
Why Immunotherapy Causes Side Effects
The side effects of immunotherapy treatments for lymphoma are often (but not always) less severe than the side effects of chemotherapy and radiation. Immunotherapy makes your immune system behave differently, though, and that can cause problems. For example, immune checkpoint inhibitors, a type of immunotherapy, make your immune system’s “fighter” T cells work more aggressively so they can destroy cancer cells. But this process can also allow your immune cells to mistakenly attack other parts of your body, like your liver or intestines.
A type of immunotherapy for lymphoma called CAR T-cell therapy (or chimeric antigen receptor T-cell therapy) modifies your T cells to help them fight cancer. “CAR T-cell therapy tries to trick your immune system into attacking a tumor. But some of the side effects we see can be severe [compared to other immunotherapies],” Diefenbach says. CAR T-cell therapy carries a higher risk of death than many other forms of immunotherapy. It can lead to infection and low blood cell counts and can weaken your immune system.
Sometimes doctors give their patients immunotherapy along with chemotherapy or radiation. It doesn’t cut the side effects of either of those treatments.
What You Might Experience
“Before you begin treatment, ask your doctor: 'What can I expect? Will I feel worse over time? Or better, or the same? Am I more at risk for side effects than most people with lymphoma?' ” Diefenbach says. For example, if you have an autoimmune disease like lupus as well as your cancer, you may be more likely to get certain side effects of immunotherapy.
Some of the most common side effects from immunotherapy used to treat lymphoma are:
- Fever and chills
- Allergic reactions or infection in the area where you received the medication (immunotherapy is given by IV)
- Diarrhea or constipation
- Skin rash or itchy skin
- Joint pain
- Appetite loss
- Coughing or breathing problems.
- Problems with your adrenal, pituitary, and thyroid glands. For example, you may get hyperthyroidism or hypothyroidism. Gland problems can lead to symptoms like dizziness, weight loss or weight gain, and low blood pressure.
- Serious or life-threatening problems in organs like your lungs, intestines, liver, or kidneys
Certain side effects are more common with certain types of immunotherapy. For example, monoclonal antibodies (which are man-made immune system proteins that attack certain parts of cancer cells) may reactivate a hepatitis B infection if you’ve had hepatitis B in the past. Talk to your doctor about the side effects that are most common from the immunotherapy being used to treat your lymphoma.
Dealing With the Side Effects of Immunotherapy
“There’s a lot doctors can do to ease the side effects of immunotherapy,” Ramos says.
Before you get immunotherapy, your doctor may give you a medication to prevent nausea, a racing heart, breathing problems, dizziness, or other problems. Before and after treatment, you may get antibiotics or antiviral medications to lower your odds of infection.
If you get side effects like inflammation and skin rash after treatment, your doctor may give you a type of medication called a corticosteroid, which suppresses your immune system. You may also get medications to ease problems like diarrhea, constipation, and joint pain.
Your doctor will carefully monitor you during and after treatment. You’ll get regular physical exams and bloodwork. Your doctor may recommend other tests or procedures, too. “It’s really important to go to all of your doctors’ appointments,” Ramos says. “Blood tests and other screening methods can help your medical team spot side effects, like inflammation in your liver or high potassium levels.”
Immunotherapy side effects are common. And you should speak up if they happen to you. “If you’ve had chemotherapy in the past, for example, you might think diarrhea or a rash is normal,” Ramos says. “But you need to tell your doctor about any side effect or change right away.” Even side effects that seem minor can be signs of a weakened immune system. Oftentimes, catching problems early can prevent more serious problems.
If you have serious or life-threatening side effects, your cancer care team will discuss whether it’s a good idea to keep you on your current immunotherapy treatment. Your doctor will consider how severe your side effects are, and whether the form of immunotherapy you’re getting is effectively treating your lymphoma. “Every patient is different,” Ramos says. “Fortunately, there are many good options for treating lymphoma.”