Immunotherapies have extended life expectancy and improved quality of life for people living with melanoma skin cancer. However, like all medications, they can cause side effects. Immunotherapy side effects can affect many parts of the body, presenting quality-of-life challenges of their own.

We’ll cover the most common immunotherapy side effects along with helpful tips for coping and management.

Recognizing Immunotherapy Side Effects

Side effects of immunotherapy for melanoma can range from mild to severe, with some much more common than others. Your doctor will likely tell you about possible side effects when prescribing immunotherapy for melanoma, and may recommend ways to manage them.

🗳️ Which side effect of immunotherapy has bothered you the most?

Fatigue

Gastrointestinal issues, like diarrhea or nausea

Skin problems, such as rash or itching

Pain or numbness

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In many cases, side effects are mild enough to be managed on your own. However, some side effects may be severe enough that you can’t manage them at home. For example, autoimmune reactions might require pausing treatment or spending time in the hospital for observation.

It’s important to stay in touch with your skin cancer care team about any side effects you experience, especially if they’re new, getting worse, or making it hard to continue your melanoma treatment.

Fatigue From Immunotherapy

Fatigue, one of the most common immunotherapy side effects, affects up to 50 percent of people using immunotherapies for melanoma. Fatigue is tiredness that’s more intense than your average tiredness — it often interferes with daily activities and may not improve with rest.

Immunotherapies That Cause Fatigue

Fatigue is a common side effect of an immunotherapy called an immune checkpoint inhibitor. Some melanoma cells can deactivate parts of the immune system, making it less able to fight them. Immune checkpoint inhibitors help protect the immune system so that it can keep up the fight against cancer cells.

Fatigue can also be a side effect of interleukin-2 (IL-2), alongside fever, chills, and body aches.

Coping With Fatigue

Fatigue can be a serious challenge in everyday life, but you can take steps to feel more energized. While it may be hard to muster energy at first, light exercise (like walking, gardening, or cycling) can ease fatigue and even help you handle immunotherapy better.

Doctors also recommend staying hydrated with water or electrolyte drinks to improve energy while taking immunotherapy for melanoma. Taking short naps throughout the day can help you conserve energy for other times when you need it.

Gastrointestinal Side Effects From Immunotherapy

Many people experience gastrointestinal (GI) issues while taking immunotherapy for melanoma, including appetite changes, diarrhea, or blood or mucus in stools. You might not feel like eating or feel too nauseated to eat. Up to 30 percent of people using immunotherapy for melanoma experience some degree of nausea.

Diarrhea and similar GI side effects often come from inflammation in the large intestine caused by your immune system’s reaction to immunotherapy. This is called immune-related colitis, and it can put you at risk of dehydration.

Immunotherapies That Cause Gastrointestinal Side Effects

Several immunotherapies commonly prescribed to treat melanoma can disrupt your GI system. You might experience nausea, diarrhea, or a low appetite as a side effect of immune checkpoint inhibitors.

Oncolytic virus therapy, a type of immunotherapy that uses viruses to activate the immune system against cancer cells, can cause the following GI side effects:

• Diarrhea
• Constipation
• Low appetite
• Belly pain
• Nausea
• Vomiting

Diarrhea is also a less common side effect of tumor-infiltrating lymphocyte (TIL) therapy, which can be used to treat advanced melanoma when other treatments haven’t worked well.

Coping With Gastrointestinal Side Effects

You can take many steps to manage GI side effects at home, including diet changes and over-the-counter medications such as loperamide (sold under brand names like Imodium). At-home strategies include:

• Drink plenty of water or electrolyte beverages.
• Avoid spicy foods, high-fiber foods, high-fat foods, and caffeine.
• Prioritize soft, bland foods with little fiber.
• Follow the BRATT (banana, rice, applesauce, tea, toast) diet for one or two days.

One MyMelanomaTeam member shared what helped him cope with diarrhea. “Imodium and Metamucil are my new friends. Lots of chicken and rice is on the menu.”

“Imodium and Metamucil are my new friends. Lots of chicken and rice is on the menu.”

— A MyMelanomaTeam member

Ask your doctor before using any medication or supplement to manage any GI side effects, including laxatives or stool softeners for constipation.

Body Pain or Numbness From Immunotherapy

Some forms of immunotherapy can cause neuropathy — numbness or tingling that seems most noticeable in the hands and feet. Sometimes it feels like pins and needles or a stinging sensation. Neuropathy can last for a short time, or stay for the rest of your life.

Similarly, some immunotherapies cause sensations that feel more like pain than numbness or stinging.

Pain side effects can include joint pain, neck stiffness, or muscle aches. Joint pain is an immune-related side effect, which means it comes from your immune system attacking your joints.

Immunotherapies That Cause Pain or Numbness

Experts estimate that about 1 percent of people taking immune checkpoint inhibitors experience neuropathy. Joint pain is a more common side effect of immune checkpoint inhibitors.

Body aches and pains can also be a side effect of IL-2, alongside other fever-like symptoms.

Coping With Neuropathy or Pain

Aches, pains, and neuropathy can be a major source of discomfort, but your doctor can recommend treatment if they become too much to handle. Otherwise, you can manage neuropathy by:

• Exercising frequently
• Avoiding alcohol
• Avoiding smoking
• Getting acupuncture (this might also help with aches and pains)

“I have numbness in my feet,” shared one MyMelanomaTeam member. “Moving them helps some. I have to be careful not to bump them. I need to wear good shoes to protect them. It also affects my fingers.”

“I have numbness in my feet. Moving them helps some. I have to be careful not to bump them. It also affects my fingers.”

— A MyMelanomaTeam member

Skin Changes From Immunotherapy

Skin issues like rashes, redness and discoloration, and itching affect up to 40 percent of people taking immunotherapy for melanoma. They’re usually mild, but if your skin problems are severe, your doctor can recommend treatment.

Immunotherapies That Cause Skin Side Effects

A skin rash is a common side effect of immune checkpoint inhibitors and a less common side effect of TIL therapy. Some people experience a serious skin reaction to imiquimod cream, a topical immunotherapy for melanoma.

Coping With Skin Changes

Coping with skin changes can involve using soothing ointments or protecting your skin from things that might worsen irritation. You can cope with skin side effects by:

• Wearing sunscreen with SPF 30 or higher
• Avoiding direct sunlight on your skin
• Wearing loose-fitting clothing
• Avoiding harsh chemicals on your skin
• Using gloves while cleaning
• Using fragrance-free lotions or ointments

“My husband has had a lot of itchy rashes and now travels with a lotion for itch relief,” shared a MyMelanomaTeam member. “He swears by it, and also takes an antihistamine. Doctor-approved, of course.”

“My husband has had a lot of itchy rashes and now travels with a lotion for itch relief. He swears by it, and also takes an antihistamine. Doctor-approved, of course.”

— A MyMelanomaTeam member

Infection Risk Due to Immunotherapy

Because they alter the immune system, immunotherapies can sometimes open the door to serious infections. You might experience frequent or hard-to-treat:

• Eye infections
• Fever and flu-like illnesses
• Viral hepatitis (a liver infection)
• Respiratory infections
• Urinary tract infections (UTIs)

Immunotherapies That Cause Infections

Serious infections are common side effects of TIL therapy. Because of the risk of serious infections, doctors give TIL therapy in a hospital.

Coping With Infections

Your doctor can treat any infections that arise as a side effect of immunotherapy. To cope with the increased risk of infections and keep yourself healthy, follow these steps:

• Stay away from people who are sick.
• Wash your hands frequently for at least 20 seconds.
• Keep hand sanitizer handy.
• Avoid eating raw or undercooked meat or eggs.

When To Call Your Doctor About Side Effects

While many mild-to-moderate immunotherapy side effects can be managed at home, some side effects need attention from your healthcare team as soon as possible. Call your doctor if you experience:

• A fever of 100.4 F (38 C) or higher, or any other signs of infection
• More than three watery stools in a day
• Blood in your stools
• Trouble walking or using your hands due to neuropathy or pain
• A peeling or blistering rash
• Worsening side effects or side effects that don’t get better