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Organ-Related Inflammation and Immunotherapy

Talk with your doctor before you begin immunotherapy, so you know what side effects to expect, how to manage them, and when to seek urgent medical care.

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Immunotherapy is a type of cancer treatment that strengthens your immune system’s response to cancer. One type of immunotherapy, called immune checkpoint inhibitor therapy, can trigger an immune response that causes inflammation to organs in your body. You’ll notice the suffix “-itis” (which means inflammation) in the names of many of these conditions.

Doctors and researchers are working to learn more about the best ways to prevent or manage inflammation-related side effects. Sometimes these side effects are managed with medicines, such as steroids, that work to slow down an overactive immune response. These side effects may be serious and even life-threatening. It’s important to talk with your health care team to know what signs and symptoms to expect, as well as when they may happen and what to do if they occur.

For people with an autoimmune disease it’s especially important to discuss this disease with your health care provider before starting treatment.

Side Effects in People Receiving Immunotherapy

This list of side effects can be a helpful reference as you learn more from your health care team about what to expect, based on the treatment you will be receiving.

Side effects are more common in these organs and systems:

  • Digestive system: Inflammation to organs in your digestive system, called colitis, may cause stomach or abdominal pain, diarrhea, and black or bloody stools. Some people have mild hepatitis, which is diagnosed during a blood test.
  • Endocrine system: When hormone-producing glands are inflamed you may have some of the problems listed below. Your doctor will check your hormone levels regularly to detect and diagnose these problems.
    • Pituitary gland inflammation is the most common endocrine system-related inflammatory problem; it may cause headaches and fatigue.
    • Adrenal gland inflammation may cause fatigue, muscle weakness, loss of appetite, weight loss, and abdominal pain.
    • Thyroid gland inflammation can cause problems such as hypothyroidism (which may cause weakness, constipation, dry skin, weight gain, and sensitivity to cold) and hyperthyroidism (which may cause diarrhea, weight loss, sweating, sensitivity to heat, and, in rare cases, atrial fibrillation).
    • Pancreatic inflammation, called pancreatitis, may cause severe abdominal pain, nausea, and vomiting.
  • Musculoskeletal system: Inflamed joints and muscles may cause you to feel pain and weakness. Inflammation of the muscles is referred to as myositis. You may also have rheumatologic problems.
  • Respiratory system (lung problems): Inflammation in the lungs, called pneumonitis, can cause you to feel short of breath and have a bad cough.
  • Skin: Skin inflammatory problems may include rashes, itchy skin, blisters, and sores. Learn more about how to manage skin and nail changes.

Side effects are less common in these organs and systems:

  • Blood (hematologic problems): You may bleed or bruise easier, a condition called thrombocytopenia. Other blood-related problems include anemia and neutropenia.
  • Eyes: You may have vision changes and/or eye pain caused by inflammatory problems such as uveitis or episcleritis.
  • Heart inflammation, called myocarditis, may lower your blood pressure. In rare cases, it may lower your heart’s ability to pump blood, disrupt your heartbeat, and cause a heart attack.
  • Kidney inflammation, called nephritis, may decrease the amount of urine you produce. You may see blood in your urine.
  • Liver inflammation, called hepatitis, may cause your skin and eyes to be yellowish. You may also have nausea or vomiting, stomach pain, fatigue, darker urine, and bleeding or bruising.
  • Nervous system inflammation may cause your hands, feet, and sometimes your face to tingle and feel numb or weak. Inflammation to the brain, called encephalitis, may cause mild flu-like symptoms or more serious side effects, such as a sudden and high fever, confusion, hallucinations, seizures, and vomiting.

Be Alert for Changes and Problems

It’s important to have any possible inflammatory problems assessed by your oncologist. Your oncologist may advise you to call him or her first about inflammatory symptoms, or you may be advised to seek emergency medical care.

Write down key information about your treatment and keep it handy, in case you need to share it with doctors in the emergency room. It’s important for other medical professionals to know you are receiving immunotherapy, so you’ll want to write down:

  • the drug name(s)
  • your doctor’s contact information
  • your hospital’s contact information

After Talking with Your Health Care Team, Make Sure You Have Answers to These Questions

  • What organ-related inflammatory side effects might I have, based on the type of immunotherapy I am receiving?
  • Should I try to manage any of these side effects at home?
  • What side effects should I call you about? Which side effects need urgent medical care? Where should I go to get urgent medical care?
  • When might these side effects start? How long might they last?
  • What type of medicine or therapy is used to treat side effects that I may have?
  • How long will it take to resolve any side effects?
  • How long after treatment might these side effects occur?
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