Supportive Care

PREPARE FOR POTENTIAL PHYSICAL AND EMOTIONAL SIDE EFFECTS

A wide-ranging group of services called supportive care can help address the physical, emotional, practical, spiritual, financial and family-related challenges you may experience. A primary focus is to help you prevent, minimize and manage treatment-related side effects. Research has shown that receiving these services as early as possible improves your overall quality of life and may make it easier to complete your therapies. Sometimes referred to as palliative care, these valuable resources are available from diagnosis through survivorship.

Side effects of immunotherapy may not appear until a few months into treatment – or even years afterward – and may affect one or more systems of the body not related to the cancer site. Each drug has a different side effect profile. Before treatment begins, ask your doctor for a list of symptoms to watch for and strategies for managing them. Determine when to contact your doctor’s office about symptoms and when to seek emergency care. Alert your health care team as soon as symptoms arise, even those that seem trivial. Prompt treatment can help prevent more serious complications and can keep you more comfortable during treatment.

POTENTIALLY SEVERE SIDE EFFECTS

Although severe side effects are not common, they are possible. Called immune-related adverse events (irAEs), they can develop rapidly, becoming serious or even life-threatening without swift medical attention. They may occur if the treatment overstimulates the immune system.

You may not be able to physically feel these symptoms at first, so it’s essential to schedule and keep all medical appointments. Routine laboratory tests and imaging may detect irAEs at an early stage. Be sure to contact your medical team if symptoms occur between appointments, and remain alert to the possibility of irAEs for two years after treatment ends. An important point is that many of the side effects associated with immunotherapy can be easily corrected if they are treated rapidly. Thus, it is very important that you contact your health care team as soon as possible if you do develop a side effect.


Infusion-related reactions
may occur with immunotherapy given intravenously (by IV), usually soon after exposure to the drug. Common symptoms are itching, rash or fever; more serious symptoms include shaking, chills, low blood pressure, dizziness, breathing difficulties and irregular heartbeat. Reactions are generally mild but can become life-threatening if not promptly treated.

Cytokine release syndrome can occur if immune cells affected by treatment rapidly release a large amount of cytokines into the bloodstream. Symptoms may include fever, headache, nausea, rapid heartbeat, decreased blood pressure and difficulty breathing. Reactions are usually mild but can be life-threatening.

COMMON SIDE EFFECTS

Each type of immunotherapy has different side effects, and every individual responds differently. Symptoms are often more intense when immunotherapies are combined.

Constipation can occur at any time, and the best way to manage is to prevent it. Talk with your doctor about preventive medications or dietary and lifestyle changes you can make. If you are already constipated, ask your doctor before using over-the-counter remedies

Coughing is a common symptom but may also signal pneumonitis (inflammation of the lungs) or a respiratory tract infection. Contact your doctor immediately so the cause of the cough can be determined and managed, particularly if the cough is new or changing.

Diarrhea, if left untreated, can lead to dehydration and loss of essential nutrients. It may also signal an immune system nearing overload. Ask your doctor about prevention medication before your treatment begins. If you have more than six episodes in 24 hours or diarrhea that routinely keeps you homebound, contact your health care team. Never use over-the-counter antidiarrheals without checking with your health care team.

Fatigue related to cancer treatment is more severe. It lasts longer than typical fatigue and may not be relieved by sleep. A proven remedy is regular exercise. Even a daily 10-minute walk can make a difference. Aim for eight hours of sleep each night, pace yourself each day and save your energy for people and activities most important to you.

Flu-like symptoms may occur, including fever, chills, aches, headaches, drowsiness, nausea, vomiting, runny nose, loss of appetite and blood pressure changes. Report symptoms to your doctor immediately.

Headache can be a common side effect. A headache that occurs and does not go away within 24 hours could be a sign of inflammation of the pituitary gland. This should be reported to your health care team.

Heart palpitations may occur. Contact your doctor immediately about abnormal heart rhythm, dizziness or lightheadedness.

Joint pain (arthralgia), muscle pain (myalgia) and pain in general may occur and typically resolves when treatment ends. People with rheumatologic or other autoimmune conditions may see those symptoms worsen or “flare,” so ensure your doctor is aware of all your medical conditions.

Mouth sores (oral mucositis) can begin as tiny sores in the lining of the mouth and may affect the gums, tongue, roof of mouth and/or lips. Pain may range from mild to severe, making it difficult to talk, eat or swallow. Ask your doctor about medications to prevent or minimize this condition. Mouth sores are much easier to treat early, so contact your health care team at the first sign of symptoms.

Nausea and vomiting can lead to dehydration in severe cases, interrupting your treatment. Both are easier to prevent than control. Ask your doctor about using antiemetics (anti-nausea drugs) before treatment begins. Non-drug approaches include progressive muscle relaxation, guided imagery, acupuncture, self-hypnosis and biofeedback.

Shortness of breath or trouble breathing after simple walking or exercise may be a sign of inflammation in the lungs or an infection. If this happens with or without a cough, you should inform your health care team.

Skin reactions can include redness and irritation similar to a sunburn, rashes that are bumpy or itchy, or dry, flaky skin that may itch. Be alert for changes in skin color, inflammation, blistering, hives, dryness, cracking around the fingertips or flushed appearance. Skin reactions can potentially become severe if not treated early, so contact your health care team about these symptoms.

Swelling (edema) in legs can be caused by fluid buildup. The effects may be reversed, so tell your health care team about recent weight gain or swelling, stiffness or a heavy feeling in your legs.

Vitiligo appears as white patches of skin that have lost pigmentation (coloration) and occurs when pigment-producing epidermal cells (melanocytes) are destroyed. It is most often seen on the face, backs of hands, knees, elbows and genitals. Affected areas may slowly become larger and are prone to sunburn. Talk with your doctor about treatment options.

QUESTIONS FOR YOUR DOCTOR

  • Is supportive care/palliative care the same thing as hospice?
  • Whom do I call if I experience side effects or feel depressed?
  • What resources are available to help my loved ones cope with my diagnosis?


TAKE CARE OF YOUR EMOTIONAL WELL-BEING

Cancer can affect you emotionally as well as physically. It’s common to experience anger, fear, guilt, insecurity and other emotions. Supportive care services can connect you with resources to help you work through your feelings. These suggestions may also help.

  • Allow yourself to fully express your emotions when they occur to help you avoid releasing bottled-up feelings in unhealthy ways.
  • Cancer survivors can be a great source of support, friendship and insight. Ask about cancer support groups available in your community, options for online support or phone-based peer support programs.
  • Explore meditation, gentle yoga, massage therapy, deep breathing exercises, or other relaxation techniques.
  • Get outside, regardless of the season. Fresh air and nature can be therapeutic.
  • Express your feelings by writing in a journal.
  • Take charge of things you can control. If decision-making feels overwhelming, ask loved ones to handle routine decisions for now.
  • Give yourself permission to grieve the loss of the life you had before cancer. Share your feelings with someone you trust.
  • Staying positive is important, but give yourself a break when you need it.
  • Find something to laugh about every day.
  • It’s extremely important to talk with your doctor about feeling depressed, hopeless or desperate, particularly if these feelings last more than a few days. Seek medical attention immediately for thoughts of suicide.


FOLLOW-UP CARE IS ESSENTIAL

To help reduce your risk of another skin cancer, three things should be added to your routine.

  1. Tell every health care professional you see from now on that you received immunotherapy. This information may alter providers´ recommendations and also alert them to consider whether any new symptoms are related to your immunotherapy treatment.
  2. Make a follow-up care plan with your oncologist for routine monitoring for early signs of recurrence, as well as to check for late effects of immunotherapy. Ask for a referral to a dermatologist if you don’t have one, and give yourself monthly full-body skin checks.
  3. Be dedicated to protecting your skin. Wear daily moisturizer with built-in sunscreen of at least SPF 15. Generously apply sunscreen with 30+ SPF before going outside, and avoid direct sun between 10 a.m. and 4 p.m. in all seasons. Wear a wide-brimmed hat or billed cap, sunglasses and protective clothing.