The following describes systems that may be affected, the irAEs and symptoms.
- Cardiovascular (cardiomyositis): chest pain, shortness of breath, leg swelling, rapid heartbeat, changes in EKG reading
- Endocrine (endocrinopathies): hyperthyroidism, hypothyroidism, extreme fatigue, persistent or unusual headaches, visual changes, alteration in mood, change in menstrual cycle
- Gastrointestinal (colitis): diarrhea with or without bleeding, abdominal pain, bowel perforation
- Liver (hepatitis): yellow skin or eyes (jaundice), nausea, abdominal pain, fatigue, fever
- Nervous system (neuropathies): tingling, numbness, a burning sensation or a loss of feeling in the hands or feet, pain, sensory overload, sensory deprivation
- Neurologic (encephalitis): confusion, hallucinations, seizures, mood or behavior changes, neck stiffness, extreme light sensitivity
- Pulmonary/lung (pneumonitis): chest pain, shortness of breath, unexplained cough
- Renal/kidneys (nephritis): decreased urine output, blood in urine, swollen ankles, loss of appetite
- Skin (dermatitis): rash, skin changes (itching, blisters, painful sores)
Cytokine release syndrome is an irAE associated with adoptive T-cell therapies and monoclonal antibodies. Reactions are generally mild but can be severe and become life-threatening without medical attention. Symptoms may include headache, fever, nausea, rash, low blood pressure and rapid heartbeat. If you have difficulty breathing, contact your doctor immediately.
COMMON SIDE EFFECTS
Constipation can be very uncomfortable and can also lead to serious medical issues. If dietary changes and over-the-counter solutions don’t help, it’s important to ask your doctor for help with managing this condition.
Coughing or difficulty breathing should be reported to your doctor immediately. Coughing may signal pneumonitis (inflammation of the lungs).
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, episodes that keep you homebound or severe abdominal cramping.
Fatigue is one of the most common side effects of immunotherapy. Cancer-related fatigue can leave you physically and emotionally exhausted. Balance activity with rest each day, focusing only on activities most important to you.
Flu-like symptoms may occur with cytokines and include fever, chills, aches, headaches, drowsiness, nausea, vomiting, runny nose, loss of appetite and blood pressure changes.
Heart palpitations may occur with certain types of immunotherapy. Contact your doctor immediately about abnormal heart rhythm, dizziness or lightheadedness.
Infusion-related reactions usually occur soon after exposure to the drug and may include itching, rash or fever. Serious symptoms are shaking, chills, low blood pressure, dizziness, breathing difficulties and irregular heartbeat. Your doctor may slow the drug’s delivery, stop it or recommend analgesics, antihistamines or corticosteroids.
Injection site reactions can be painful. Discuss these with your health care team. Your doctor may modify your treatment.
Mouth sores may begin as mild pain or burning in the lips, gums, tongue or roof of the mouth, followed by white patches and then large red lesions. Report symptoms right away. Drink plenty of fluids, and brush your teeth with a soft-bristle toothbrush.
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 therapies. Avoid unpleasant odors, eat small meals and ask your doctor about antiemetics (anti-nausea medications).
Skin reactions, such as bumpy or itchy red rashes, are common with immune checkpoint inhibitors. 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.
Swelling in legs (edema) results from fluid buildup. The effects may be reversed, so tell your health care team about any recent weight gain or swelling, stiffness or heavy feeling in your legs.
SIDEBAR: NURTURE YOUR EMOTIONAL WELL-BEING
Resources and referrals are available from your health care team to help you manage emotional issues that can arise from your cancer diagnosis, treatment and changing life circumstances.
You can also take advantage of proven coping strategies often recommended for people who have cancer. Fresh air, journaling, physical activity and support groups may help you manage your emotions. Consider the following suggestions for dealing effectively with specific emotions.
Anger: Avoid expressing your anger in unhealthy ways by finding safer alternatives. Punch a pillow or engage in intense physical activity. Yell as loud as you can when you’re alone. 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. Find out if your treatment facility offers cancer-related informational meetings so you can learn more about what to expect.
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 alleviate fear. Research your type of cancer and learn as much as possible about your 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. Your diagnosis may also trigger repressed grief from losing a loved one to cancer in the past. Allow yourself permission to fully grieve. Turn to loved ones or a spiritual community for comfort.
Indecisiveness: Facing such an illness and having your routine upended can make it difficult to focus enough to make clear decisions. Take charge of the things you can control, and ask people close to you to handle day-to-day decisions for now.