Learning About Caring for Someone Who Is Getting Immunotherapy for Cancer

Immunotherapy is a type of cancer treatment. It helps the body's immune system find and fight cancer cells. The immune system normally protects the body from sickness and infection. But cancer cells can sometimes hide from the immune system. Immunotherapy can help the immune system find cancer and fight back.

There are several types of immunotherapy. The type your care partner gets will depend on their cancer and their treatment plan. Immunotherapy may be used on its own. It may also be used with other cancer treatments, such as chemotherapy, radiation therapy, or targeted therapy.

You can support your care partner in many ways during immunotherapy. Here are some tips.

Learning about your care partner's type of immunotherapy can help you know what to expect. Ask the cancer care team what side effects are possible, what symptoms to watch for, and when to report them.

You can also encourage your care partner to follow their treatment plan and to tell their care team about any new or changing symptoms.

If your care partner wants you there, going to appointments can help you both stay informed. Before each visit, help write a list of questions or concerns. During the visit, take notes so you can both look over the information later.

Keep a folder with important health information and bring it to appointments. Also bring a list of your care partner's medicines or the bottles themselves. Before you leave the appointment, make sure you both understand the next steps.

Encourage your care partner to ask questions, share concerns, and stay involved in choices about their care. You can also help them understand the treatments their care team suggests and the choices they have.

Pay attention to changes in how your care partner is feeling. Sometimes they may not be able to describe a new symptom. If that happens, tell the care team what you have noticed.

Get to know the people on your care partner's care team, and ask questions when something is not clear. Find out who to call with questions or concerns, both during office hours and after hours. Keep their contact information somewhere easy to find so you can reach them quickly.

Ask the care team if they provide an immunotherapy wallet card or another treatment information card. If they don't, have your care partner keep information about the immunotherapy, the possible side effects, and the care team's phone numbers with them.

Cancer treatment can make daily life harder. Depending on what your care partner needs, you may be able to help with meals, rides, grocery shopping, or other daily tasks.

Emotional support matters too. Make time to listen, and encourage your care partner to talk openly about what they are going through. At the same time, respect their wishes.

Everyone responds differently to immunotherapy. Immunotherapy turns on the immune system. Sometimes this can cause the immune system to attack healthy cells and organs. This can lead to swelling (inflammation) and other side effects in many parts of the body.

Side effects can happen while someone is getting treatment. Sometimes they show up weeks or even months after treatment ends. Fatigue, or feeling very tired, is a common side effect.

Other possible side effects include:

• A skin rash or itching.
• Redness or another color change, including at the needle site.
• Flu-like symptoms, such as fever, chills, body aches, and headaches.
• Diarrhea, nausea, vomiting, or belly pain.
• A cough.
• Shortness of breath.
• Muscle or joint pain.
• Mouth sores, a dry mouth, or pain when eating.

Less common but serious side effects can affect major organs and other parts of the body. Signs and symptoms can vary based on what parts of the body are affected.

• Liver: Yellow skin or eyes, dark urine, pain on the right side of the belly, loss of appetite, or easy bruising or bleeding.
• Kidneys: Urinating less than usual, blood in the urine, fast weight gain, or swelling in the face, belly, legs, or feet.
• Heart: Chest pain, a fast or uneven heartbeat, new shortness of breath, or feeling faint.
• Lungs: A new or worse cough, trouble breathing, wheezing, or chest pain.
• Hormone-making glands, such as the thyroid: Feeling very tired, weight changes, feeling too cold or too hot, being very thirsty, or urinating often.
• Stomach and bowel: Blood or mucus in the stool, belly pain, or diarrhea.
• Brain or spinal cord: Headaches, confusion, or changes in behavior.
• Nerves: Numbness, tingling, or weakness.
• Eyes: Blurry vision, dry eyes, eye pain or redness, or light hurting the eyes.

Learning about your care partner's treatment can help you catch side effects early and report changes to the care team. Help your care partner keep track of new symptoms. Write down when they started and whether they are getting better or worse.

Report any new or worse side effects to the care team right away, even if they seem mild. Keep the team's contact information handy so you know who to call with a question or concern.

Reporting symptoms when they start can help the care team find the cause early. It can also help prevent severe side effects.

Caring for yourself is an important part of caring for someone else. Making time for your own health and well-being can help you keep supporting your care partner.

You do not have to handle everything on your own. Ask family members and friends for help. Accept help when people offer it. This may mean asking someone to cook a meal, run an errand, give a ride, or take care of another daily task.

Try to make time to rest, relax, and do things you enjoy. Stay connected with friends and family. You can also connect with other caregivers who understand what you are going through. A caregiver support group may help too.

Remember to take care of your body as well. Eat well, stay active when you can, get enough sleep, and keep up with your own doctor visits.

It is also important to pay attention to your feelings. Caring for someone with a health condition can bring up many different emotions. If you need more support, talk with someone you trust. This could be a friend, counselor, social worker, or spiritual leader.

Your time and energy may be limited. Focus on what matters most, and let others help when needed. Watch for signs of caregiver stress. If you feel overwhelmed or are having a hard time coping, reach out for support.