Cancer Immunotherapy: Alerting Your Team to Side Effects

This article is for people who are taking an immunotherapy medicine for cancer or their caregivers who want to learn more about cancer immunotherapy. The goal is to help you know when and how to take action if you have side effects of your immunotherapy medicines.

You will learn about:

• Immunotherapy medicines used to treat cancer

• Common and serious side effects of cancer immunotherapy

• What to do if you have side effects of your immunotherapy

• How to be prepared and what to tell your providers if you have side effects

• How side effects are treated

• Questions to ask your cancer provider about immunotherapy

Immunotherapy medicines, also called immune checkpoint inhibitors, work by boosting your body's immune system to attack cancer cells.

Immunotherapy medicines approved for treatment of some types of cancer include:

• Atezolizumab (Tecentriq^®)

• Avelumab (Bavencio^®)

• Cemiplimab (Libtayo^®)

• Durvalumab (Imfinzi^®)

• Ipilimumab (Yervoy^®)

• Nivolumab (Opdivo^®)

• Pembrolizumab (Keytruda^®)

Your provider will discuss the immunotherapy medicine that is right for you.

Immunotherapy is usually well-tolerated; sometimes it is even better tolerated than chemotherapy. Common side effects include:

• Fatigue (most common)

• Nausea

• Feeling less hungry than usual

• Constipation

• Rash, itching, or sensitivity to sunlight

• Aches or pain in joints, muscles, or bones

• Numbness or weakness

• Hypothyroidism (underactive thyroid gland)

These side effects can occur any time you are taking immunotherapy, early or late in your treatment or even after your treatment ends.

Sometimes immunotherapy can cause serious or life-threatening problems because the medicine may cause your immune system to attack healthy cells in your body.

Some of the symptoms that could mean you are having a serious side effect are:

• Diarrhea or abdominal pains

• Shortness of breath or cough

• Headache or stiff neck

• Fast heartbeat

• Dizziness

These side effects, which could mean that your immune system is attacking healthy cells in your body, can occur any time you are taking immunotherapy: early or late in your treatment, or even after your treatment ends.

Ask your provider if a 'wallet card' is available. A wallet card is a small card that has information about immunotherapy on it that you can hand to emergency care providers who may not be familiar with that treatment. Having this information will help them know what to do about your side effect.

If you have symptoms of a serious side effect, you should contact your provider right away or go to a hospital for emergency treatment if you can't reach your provider.

If you're having trouble breathing and can't reach your provider right away, always call 911 or go to the emergency room (ER).

If you go to an ER, tell the provider you are taking immunotherapy for cancer. Take a list of your medicines and doses, and your cancer provider's contact information with you and give to the ER provider.

Tell your provider about any change you notice in your health during and after treatment.

A key point to remember is that having a side effect won't necessarily mean you'll need to stop or change your treatment.

Your provider may be able to:

• Help you feel better if you have side effects that can be easily managed

• Prevent a mild side effect from becoming more serious

• Treat you for a serious side effect, if needed

Treatment for common side effects includes treating the specific symptom.

Treatment for serious side effects includes steroids or other immunosuppressive agents. Also, you may be referred to a specialist for further treatment. For example, if you have a serious problem with your skin, you may be referred to a dermatologist.

Side effects usually do not go away on their own, but many will go away after treatment with steroids or other immunosuppressive agents.

Other side effects, such as damages to your thyroid gland, may be lifelong.

Talk to your provider about any care you'll need after treatment ends. Your provider can help you manage your health moving forward.

Ask your provider questions about the side effects of immunotherapy, including:

• What side effects could happen?

• When do side effects happen?

• Who should I contact if I notice any changes in my health?

• When should I call 911 or go to an emergency room?

• What should other providers I may see know about my cancer treatment?

• If I have side effects, will it mean I have to stop treatment?

• How are side effects treated?

• Do you have a wallet card I can keep in case I do need emergency care?

Congratulations!

You have successfully completed the program: Cancer Immunotherapy: Alerting Your Team to Side Effects

View Additional Materials on this topic that you may find useful Immunotherapy to treat cancer