- Cardiovascular (myocarditis): chest pain, shortness of breath, leg swelling, rapid heartbeat, changes in EKG reading, impaired heart pumping function
- Endocrine (endocrinopathies): hyper-thyroidism, hypothyroidism, diabetes, extreme fatigue, persistent or unusual headaches, visual changes, alteration in mood, changes in menstrual cycle
- Gastrointestinal (colitis): diarrhea with or without bleeding, abdominal pain, bowel perforation
- Liver (hepatitis): yellow skin or eyes (jaundice), nausea, abdominal pain, fatigue, fever
- Nervous system (neuropathies): numbness, tingling, pain, a burning sensation or loss of feeling in the hands or feet, sensory overload, sensory deprivation
- Neurologic (encephalitis): confusion, hallucinations, seizures, changes in mood or behavior, neck stiffness, extreme sensitivity to light
- Pulmonary/lung (pneumonitis): chest pain, shortness of breath, unexplained cough
- Renal/kidneys (nephritis): decreased urine output, blood in urine, swollen ankles, loss of appetite
- Skin (dermatitis): rash, skin changes, itching, blisters, painful sores
MANAGING SIDE EFFECTS
Everyone responds differently to immunotherapy, including combinations of immunotherapy with chemotherapy or other treatments. Following are common side effects and suggestions to help manage them.
Alopecia (hair loss) can affect all parts of the body. Caps, hats, turbans, scarves and wigs are available as head coverings. If you go natural, use a sunscreen with a sun protection factor (SPF) of at least 30. Contact your health insurance provider to see if the cost of a wig is covered with a doctor’s prescription for a “cranial prosthesis due to alopecia caused by cancer treatment.” Ebeauty (www.eBeauty.com) offers a free wig exchange program. Your nurse navigator may also have information about resources for free wigs.
Bone loss may occur when lung cancer spreads to the bone, which can then become thin, porous and brittle. Your doctor can monitor your bone mass through bone density scans taken before, during and after treatment and may also prescribe bone-modifying agents to help prevent or delay bone fractures. Maintain a healthy weight. Minimize fall risks such as loose rugs, cluttered walkways and poor lighting.
Cognitive dysfunction, often called chemo brain, occurs when people have trouble with memory, concentration or processing information during or after cancer treatment. Though associated with chemotherapy, it can result from other treatments and can last for months or years. Try carrying a daily planner to help stay on track. Use to-do lists, and focus on doing one thing at a time.
Constipation can be very uncomfortable and can lead to serious medical issues. Eat high-fiber foods, drink plenty of clear fluids throughout the day and establish regular bowel habits. It’s important to discuss this condition with your doctor, and always check first before taking over-the-counter laxatives.
Coughing is a common symptom of lung cancer and occurs with some types of immunotherapy. A cough may 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, especially if the cough is new or changing.
Decreased appetite may occur. To minimize weight loss, try to maintain a nutritious diet during and after treatment, choosing high-calorie, high-protein foods rich in nutrients. If you cannot eat enough to maintain your weight, talk with your doctor.
Diarrhea is uncomfortable when mild. Left untreated, it can quickly become serious. Severe diarrhea can lead to dehydration and electrolyte imbalance. Contact your medical team immediately about severe abdominal cramping, four or more bowel movements than usual per day or episodes that keep you homebound.
Dyspnea is the medical term for difficult or labored breathing or shortness of breath. It can also be a symptom of pneumonitis, a potentially serious irAE. Contact your medical team immediately if you have difficulty breathing so they can determine the cause. If labored breathing comes on suddenly, seek immediate medical attention or call 911.
Fatigue from cancer treatment is more intense and longer-lasting than regular tiredness and can leave you physically and emotionally exhausted. Balance activity with rest, take short naps as needed and save your energy for the activities most important to you. Getting regular exercise, even walking five or 10 minutes daily, is the most effective remedy for treatment-related fatigue.
Infusion-related reactions may occur during or soon after exposure to the drug and may include itching, rash or fever. Serious symptoms are shaking, chills, low blood pressure, dizziness, throat tightness, skin rash or flushing, trouble breathing and irregular heartbeat. Report this immediately. Your doctor may slow the drug’s infusion rate or recommend analgesics, antihistamines or corticosteroids.
Injection site reactions can be painful, so discuss solutions with your health care team. Your doctor may modify your treatment.
Muscle and joint pain ranging from mild to severe may affect the whole body or only certain areas. Immunotherapy-related pain typically resolves when treatment ends. If pain persists or worsens, discuss pain management options with your doctor.
Nausea is much easier to prevent than to resolve once it progresses, so ask your doctor about prescribing antiemetic (anti-nausea) medication before you begin treatment. Avoid unpleasant odors. Try eating dry foods such as cereal, crackers or plain toast first thing in the morning. Getting fresh air at the onset of nausea may help.
Pain caused by a tumor pressing on organs, tissues or joints, or by cancer that has metastasized to bone, may occur. Contact your medical team right away to discuss ways to reduce and manage the pain.
Skin reactions may include severe itching and bumpy or itchy red rashes. Be alert to changes in skin color, inflammation, blistering, hives, dryness, cracked fingertips, sun sensitivity, flushing or redness. Moisturize skin twice a day with a thick cream. Avoid detergents, body soap or moisturizers containing alcohol, perfume or dyes. Your doctor may recommend a corticosteroid or numbing medication or prescribe an anti-histamine, medicated creams or antibiotics.
SIDEBAR: TAKE CARE OF YOUR EMOTIONAL WELL-BEING
You may be feeling intense and unfamiliar emotions as a result of your diagnosis and the uncertainties and challenges you and your loved ones are facing. Various supportive care resources and services are designed to help you and your loved ones cope, including counselors and therapists with expertise in working with people living with cancer. Don’t hesitate to ask your health care team for a referral. You can also try these helpful strategies: get regular physical exercise, keep a journal, enjoy nature’s beauty, join a local or online cancer support group or participate in phone-based peer-to-peer counseling with other lung cancer survivors.
Following are some emotions you may experience and suggestions for managing them.
- Anger is common before, during and after cancer treatment. Allow yourself to express your feelings. To avoid releasing bottled-up anger in unhealthy ways, find safe alternatives. Explain your feelings to a trusted friend or participate in intense physical activity.
- Anxiety and worry may interfere with your ability to cope with treatment and function day to day. Explore relaxation techniques, such as meditation, muscle relaxation, yoga or guided imagery. Peer-to-peer cancer support volunteers are good listeners who can offer insight into what to expect — either by phone or online.
- Depression is most likely to occur when people with cancer have pain or other unrelieved symptoms. It’s extremely important to talk with your doctor about feeling hopeless, helpless, “numb” or worthless. If these feelings last more than a few days or if you have thoughts of death or of attempting suicide, seek medical attention immediately.
- Emotional overload is common because so much of what you’re experiencing is unfamiliar and beyond your control. Yoga, meditation or guided imagery may help calm your mind. Take charge of things you can control, delegate tasks to others who can lend a hand, and ask loved ones to handle routine decision-making.
- Fear occurs because of all the sudden uncertainties, including financial worries, possible changes in your appearance or sexuality and how you’ll respond to treatment. Knowledge helps reduce fear. Learn as much as you can about all aspects of your treatment plan so you’ll have an idea of what to expect. Share your fears with a friend you trust.
- Grief is natural as you may mourn the unexpected changes in your life and the loss of a future without the cloud of recurrence. Your diagnosis may also trigger past grief if you’ve lost a loved one to cancer. Give yourself permission to grieve, feeling a full range of emotions. Talking with a grief counselor may be helpful.
- Guilt may occur if you blame yourself for getting cancer because of actions you did or didn’t take, if you feel you’re a burden to loved ones or if your prognosis is better than that of others living with lung cancer. Talk with a therapist about these feelings.
- Loneliness may occur at various times throughout treatment, especially if you feel no one understands what you’re going through or if friends or family members have stopped calling or visiting because they don’t know what to say. Consider reaching out for a conversation unrelated to cancer. Be open to meeting other survivors.
SIDEBAR: BEING SMOKE-FREE REDUCES RISK OF COMPLICATIONS
If you’re a tobacco user diagnosed with lung cancer, you may believe there’s no reason to quit now. This is not true.
The most important reason to stop smoking if you’re undergoing treatment is that your cancer therapy will be more effective. A common and potentially serious side effect of immune checkpoint inhibitors is pneumonitis (inflammation of the lungs), and smoking can further complicate this condition. Additional benefits of
quitting follow:
- Decreased heart rate and lower blood pressure
- Less risk of infection
- Faster healing from surgery and a potentially shorter hospital stay
- Less severe side effects from chemotherapy
- Less chance of developing secondary cancers
Quitting is difficult, but you don’t have to do it alone. Ask your health care team about local resources and check out these resources that are ready to assist you.
- American Cancer Society:cancer.org, 800-227-2345
- BecomeAnEx: becomeanex.org
- Freedom from Smoking: www.lung.org/stop-smoking/join-freedom-from-smoking
- National Cancer Institute Smoking Quitline: 877-448-7848
- QuitStart:smokefree.gov
- gov: smokefree.gov, 800-784-8669
- SmokefreeTXT:gov/smokefreetxt