Inform yourself about potential treatment-related side effects
Like all cancer treatments, immunotherapy may cause side effects. And when used in combination with other treatments, they can be more intense. Keep in mind, however, that not every person will have every side effect. Each type of immunotherapy is unique, so request a list of potential concerns specific to the therapy you’ll receive.
Your health care team will draw on supportive care services to help manage any physical and emotional distress that stems from your illness and treatment. The goal is to help you maintain a good quality of life from the time you’re diagnosed through treatment and survivorship.
Side effects of immunotherapy may not appear until a few months into treatment or even years afterward. Ask your nurse navigator about available supportive care services so you can make a plan for how to respond if a side effect occurs. Alert your team as soon as any symptoms appear that have been identified as needing immediate attention. Prompt treatment may help prevent more serious complications.
Potentially Severe Side Effects
Severe side effects aren’t common but can occur with certain types of treatment. Ask your doctor if you are at risk, how to identify the symptoms and when to seek emergency care. Report symptoms immediately if they occur. The side effects can be easily corrected if they are treated rapidly.
Cytokine release syndrome can occur if immune cells affected by treatment rapidly release large amounts of cytokines into the bloodstream. This is called a “cytokine storm.” Cytokines are a type of protein made by certain immune and non-immune cells that can stimulate or slow down the immune system. Reactions are usually mild but can be severe and even life-threatening. Symptoms may include headache, fever, nausea, rash, low blood pressure, rapid heartbeat and difficulty breathing.
Immune-related adverse events (irAEs) may occur with certain immunotherapy drugs. They can occur if the immune system becomes overstimulated by treatment and causes inflammation in one or more organs or systems in the body (see Table 1). Some irAEs can develop rapidly, becoming severe and even life-threatening without swift medical attention. Before beginning immunotherapy, talk with your doctor about your risk for irAEs and learn the symptoms.
Making and keeping all medical appointments on schedule is very important because routine laboratory tests and imaging may detect an irAE in its early stages before you can feel symptoms. Contact your health care team if symptoms arise between appointments, and remain alert to the possibility of irAEs for up to two years after completing immunotherapy. Let your navigator know if transportation could be a problem if irAEs develop. Your navigator can arrange transportation services for you.
Infection can occur as a result of a low white blood cell count (neutropenia) or other factors. This side effect is possible but very rare with most forms of immunotherapy. This may be more commonly seen when immunotherapy is given with or soon after chemotherapy or radiation therapy. Contact your doctor immediately – do not wait until the next day – if you have any of these symptoms: oral temperature over 100.5°F, chills or sweating; body aches, chills and fatigue with or without fever; coughing, shortness of breath or painful breathing; abdominal pain; sore throat; mouth sores; painful, swollen or reddened skin; pus or drainage from an open cut or sore; pain or burning during urination; pain or sores around the anus; or vaginal discharge or itching.
Infusion-related reactions most frequently occur with treatment given intravenously (IV) through a vein in your arm, usually soon after exposure to the drug. Reactions are generally mild, such as itching, rash or fever. More serious symptoms such as shaking, chills, low blood pressure, dizziness, breathing difficulties or irregular heartbeat can be serious or even fatal without medical intervention.
Tumor lysis syndrome (TLS) may occur after treatment of a fast-growing cancer, especially certain blood cancers. Symptoms may include vomiting, diarrhea, muscle cramps or twitches, neuropathy and decreased urination. TLS can potentially cause damage to the kidneys, heart, liver or other organs.
|Body System||irAE||Symptoms and Signs|
|Cardiovascular||Myocarditis||Chest pain, shortness of breath, leg swelling, rapid heartbeat, changes in EKG reading, impaired heart pumping function|
|Endocrine||Endocrinopathies||Hyperthyroidism, hypothyroidism, diabetes, extreme fatigue, persistent or unusual headaches, visual changes, alteration in mood, changes in menstrual cycle|
|Gastrointestinal||Colitis||Diarrhea with or without bleeding, abdominal pain or cramping, bowel perforation|
|Liver||Hepatitis||Yellow/orange-colored skin or eyes (jaundice), nausea, abdominal pain, fatigue, fever, poor appetite|
|Nervous system||Neuropathies||Numbness, tingling, pain, a burning sensation or loss of feeling in the hands or feet, sensory overload, sensory deprivation|
|Neurologic||Encephalitis||Confusion, hallucinations, seizures, changes in mood or behavior, neck stiffness, extreme sensitivity to light|
|Pulmonary/lung||Pneumonitis||Chest pain, shortness of breath, unexplained cough or fever|
|Renal/kidneys||Nephritis||Decreased urine output, blood in urine, swollen ankles, loss of appetite|
|Skin||Dermatitis||Rash, skin changes, itching, blisters, painful sores|
Common Side Effects
Anemia results from an abnormally low red blood cell count. Red blood cells carry oxygen to the body’s tissues. Symptoms may include fatigue, weakness, shortness of breath or dizziness. It can be temporary or long lasting.
Constipation is characterized by difficulty passing stools or by less frequent bowel movements compared to your usual bowel habits. The best way to manage constipation is to prevent it. Talk to your doctor about preventive medications or beneficial changes you can make in your diet or lifestyle.
Coughing or difficulty breathing should be reported to your doctor immediately. Coughing may signal pneumonitis (inflammation of the lungs).
Decreased appetite may occur as a result of cancer treatment. Your body needs more nutrients to replenish the healthy cells that support you before, during or after treatment to prevent weight loss, maintain your strength and energy, tolerate the side effects of treatment better, reduce your risk of infections and recover faster. If you are not able to maintain a healthy weight, talk with your health care team or a registered dietitian about ways to supplement your diet with the nutrition support you need.
Diarrhea is common with immune checkpoint inhibitors and cytokines. It can lead to dehydration and electrolyte imbalance and may signal that the immune system is nearing overload. Contact your health care team immediately if you have four or more bowel movements than usual in a day, blood in the stools, episodes that keep you homebound or severe abdominal cramping. Make your treatment team aware of your normal bowel habits so these patterns can be factored in to managing your bowel regimen going forward.
Difficulty breathing (dyspnea) , with or without coughing, can be a side effect but may also signal a serious condition, such as pneumonitis or a respiratory tract infection. Contact your doctor immediately if you are short of breath or have difficulty breathing.
Fatigue is the most common side effect for many types of immunotherapy. Cancer-related fatigue is more severe than general tiredness, lasts longer and may not be relieved by sleep. It can leave you physically, emotionally and/or mentally exhausted. Balance activity with rest each day, focusing only on activities that are most important to you. If fatigue regularly keeps you from your normal activities and things you enjoy, talk with your health care team about your options.
Flu-like symptoms may occur with some immunotherapies, such as cytokines and CAR T-cell therapy. Symptoms may include fever, chills, aches, headaches, drowsiness, nausea, vomiting, runny nose, loss of appetite and blood pressure changes.
Headache can be a common side effect. A headache that occurs and does not go away within 24 hours could be a sign of inflammation of the pituitary gland. This should be reported to your health care team.
Heart palpitations may occur. Contact your doctor immediately about abnormal heart rhythm, dizziness or lightheadedness.
Muscle and joint pain may occur with immune checkpoint inhibitors. Pain ranges from mild to severe, affecting the whole body or just certain areas. Pain typically resolves when treatment ends. If it persists or worsens, discuss pain management options with your doctor.
Nausea and vomiting may occur, particularly when immunotherapy is combined with other types of treatments. Both are much easier to prevent than control, so ask your doctor about taking antiemetics (anti-nausea drugs) before treatment begins to prevent nausea and vomiting from happening at all. Severe vomiting can lead to dehydration.
Contact your doctor about any of these serious symptoms: more than three episodes of vomiting an hour for at least three hours, blood in vomit, vomit resembling coffee grounds; weakness or dizziness; or being unable to keep your medications down, eat solid food for more than two days or drink more than 8 cups of fluid or ice chips in 24 hours.
Neutropenia is a low number of neutrophils, a type of white blood cell. Neutrophils play an important role in preventing infection. Having an abnormally low number increases the risk of infection. Neutropenia also makes it more difficult for an infection to resolve if bacteria do enter the body. You can reduce your risk of getting an infection with frequent hand washing, avoiding crowds and using extra precaution to avoid injuries. Neutropenia is possible but not very common after immunotherapy. It is more likely to occur when immunotherapy is given with or soon after chemotherapy or radiation therapy.
Skin reactions are common with immune checkpoint inhibitors and cytokine therapy. Be alert for changes in skin color, inflammation, blistering, hives, dryness, cracking around fingertips, flushing or redness. A corticosteroid, numbing medicine, antihistamine, medicated cream or antibiotic may be recommended. Most reactions are mild to moderate, but some can become severe without early treatment.
Upper respiratory tract infections, including coughing, nasal congestion and fever, may occur. These can disrupt treatment, so it is important to practice good hygiene, such as proper hand washing, to help reduce the spread of infection.
Take care of your emotional well-being
It’s natural to feel a range of emotions after receiving a cancer diagnosis. Your life circumstances are changing, and it can be unsettling. Ask your health care team about the supportive care resources available. Take advantage of proven coping strategies, such as journaling, physical activity and support groups, and consider these suggestions for managing the following emotions.
Anger: Express your anger in healthy ways. Exercise, or talk with a trusted friend about your feelings.
Anxiety: Explore relaxation techniques, such as deep breathing, meditation, yoga, muscle relaxation exercises or massage. Share your anxieties with a good listener.
Depression: Discuss ongoing feelings of sadness, hopelessness, despair or emotional numbness with your health care team immediately. Depression is a potential side effect of some immunotherapy treatments. It can also occur if your disease symptoms or treatment side effects aren’t being relieved. Contact your doctor if depression continues for more than a week. Get immediate medical attention if you have thoughts of suicide.
Emotional overload: Deep breathing exercises, yoga, meditation or guided imagery may be useful in calming your mind. Make a concerted effort to focus on just one thing at a time. Delegate tasks and chores to friends and loved ones who can lend a hand.
Fear: Knowledge helps relieve feelings of fear. Learn as much as possible about your type of cancer and treatment plan so you’ll know what to expect. Join a support group or find one online to talk with others who’ve had similar experiences and challenges.
Grief: It’s normal to mourn the loss of your health and a future that didn’t include cancer. Allow yourself permission to fully grieve. Turn to loved ones or a spiritual community for comfort.