Plan Ahead For Managing Physical and Emotional Side Effects
Managing the possible symptoms from your cancer diagnosis or treatment will help you maintain your desired quality of life throughout the continuum of care. Your multidisciplinary team can help you address the physical, emotional, practical, spiritual, financial and family-related challenges.
Discuss potential side effects with your health care team before you begin treatment, and ask for a list of symptoms to watch for. Alert your team as soon as any symptoms that need immediate attention start. Prompt treatment may help prevent more serious complications.
Potentially Severe Side Effects
Severe side effects, including but not limited to those below, are not common but can occur with certain types of treatment. Ask your doctor if you are at risk, how to identify the symptoms and when to seek emergency care. Report symptoms immediately if they occur. The side effects may be easily corrected if they are treated promptly.
Infusion-related reactions most frequently occur with treatment given intravenously (IV) through a vein in your arm, usually soon after exposure to the drug. Reactions are generally mild, such as itching, rash or fever. More serious symptoms, such as shaking, chills, low blood pressure, dizziness, breathing difficulties or irregular heartbeat, can be serious or even fatal without medical intervention.
Immune-related adverse events (irAEs) may occur with certain immunotherapy drugs. They can occur if the immune system becomes overstimulated by treatment and causes inflammation in one or more organs or systems in the body (see Table 1). Some irAEs can develop rapidly, becoming severe and even life-threatening without swift medical attention. Before beginning immunotherapy, talk with your doctor about your risk for irAEs and learn the symptoms.
Making and keeping all medical appointments on schedule are very important because routine laboratory tests and imaging may detect an irAE in its early stages before you can feel symptoms. Contact your health care team if symptoms arise between appointments, and remain alert to the possibility of irAEs for up to two years after completing immunotherapy. Let your nurse or nurse navigator know if transportation could be a problem if irAEs develop so transportation can be arranged for you.
|Body System||irAE||Symptoms and Signs|
|Cardiovascular||Myocarditis||Chest pain, shortness of breath, leg swelling, rapid heartbeat, changes in EKG reading, impaired heart pumping function|
|Endocrine||Endocrinopathies||Hyperthyroidism, 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 or cramping, bowel perforation|
|Liver||Hepatitis||Yellow/orange-colored skin or eyes (jaundice), nausea, abdominal pain, fatigue, fever, poor appetite|
|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 or fever|
|Renal/kidneys||Nephritis||Decreased urine output, blood in urine, swollen ankles, loss of appetite|
|Skin||Dermatitis||Rash, skin changes, itching, blisters, painful sores|
Ocular (eye) complications, including visual disturbances, may occur as a result of how some drug therapies work to treat cancer. Inform your doctor if you have vision or other eye problems.
Cardiomyopathy refers to disease of the heart muscle that makes it more difficult for the heart to pump blood through the body. It may cause shortness of breath, fatigue or swelling. This type of acquired cardiomyopathy may develop from certain drug therapies.
Venous thromboembolism, including blood clots, deep vein thrombosis and pulmonary embolism, may be a side effect of certain drug therapies. Tell your doctor if you have swelling, discomfort, chest pain or difficulty breathing.
Common Side Effects
Abdominal pain occurs in the stomach and may include cramping and dull aches. This type of pain can be more severe and debilitating than the occasional abdominal pain experienced by healthy individuals. Be sure to talk to your doctor openly about any abdominal pain you have so it can be controlled.
Bleeding problems (hemorrhages) may occur. Make sure your health care team is aware of any history of bleeding problems, and contact them immediately if you experience bleeding along with any of these symptoms: blood in your stools or black, tar-like stools; vomit that looks like coffee grounds; coughing up blood or blood clots or dizziness, weakness or headaches.
Constipation is characterized by difficulty passing stools or by less frequent bowel movements compared to your usual bowel habits. The best way to manage constipation is to prevent it. Talk to your doctor about preventive medications or changes you can make in your diet or lifestyle.
Coughing should be reported to your doctor immediately. Coughing may signal pneumo-nitis (inflammation of the lungs).
Decreased appetite and weight loss may occur as a result of cancer treatment. Your body needs more nutrients to replenish the healthy cells that support you before, during or after treatment. Proper nutrition helps you prevent weight loss, maintain your strength and energy, tolerate the side effects of treatment better, reduce your risk of infections and recover faster. If you are not able to maintain a healthy weight, talk with your health care team or a registered dietitian about ways to supplement your diet with nutrition support.
Diarrhea can lead to dehydration and electrolyte imbalance and may signal that the immune system is nearing overload. Contact your health care team immediately if you have four or more bowel movements than usual in a day, blood in the stools, episodes that keep you homebound or severe abdominal cramping. Make your treatment team aware of your normal bowel habits so these patterns can be factored in to managing your bowel regimen going forward.
Difficulty breathing (dyspnea), with or without coughing, can be a side effect but may also signal a serious condition, such as pneumonitis or a respiratory tract infection. Contact your doctor immediately if you are short of breath or have difficulty breathing.
Fatigue is the most common side effect for many types of therapy. Cancer-related fa-tigue is more severe than general tiredness, lasts longer and may not be relieved by sleep. It can leave you physically, emotionally and mentally exhausted. Balance activity with rest each day, focusing only on activities that are most important to you. If fatigue regularly keeps you from your normal activities and things you enjoy, talk with your health care team about your options.
Fever, which occurs when the body’s temperature is abnormally high, is a response to infection. A fever can develop when you are receiving drug therapy and can be particularly concerning if your white blood cell count is low (neutropenia). If you develop even a mild fever after receiving treatment, call your doctor immediately. If you are taking medication that has fever as a side effect, check your temperature if you feel warm or unwell. For fever that is related to flu-like symptoms, your doctor may recommend over-the-counter medications. Discuss your options with your doctor before treatment begins so you know what to do. The average normal body temperature is 98.6° F, but it is important for your treatment team to know your normal body temperature because not everyone’s normal temperature is 98.6° F.
Headache can be a common side effect. A headache that does not go away within 24 hours should be reported to your health care team. Occasionally, a headache can be associated with inflammation of the pituitary gland.
Hypertension is abnormally high blood pressure. Over time, the elevated force of the blood on the arteries is so great that it causes small tears in the artery walls. Plaque (small particles of fat, cholesterol and other substances) then gets stuck in the tears and builds up, which can slow blood flow to the heart, brain, kidneys, arms and legs.
Lymphedema occurs when lymph nodes are removed or damaged, causing swelling as lymph fluid builds up in nearby tissues (see Figure 1). A hand, arm or leg is most often affected. If lymphedema is a potential side effect of your therapy, consider meeting beforehand with a certified lymphedema specialist to learn how to reduce your risk.
Muscle and joint pain may occur with some drug therapies. Pain ranges from mild to se-vere, affecting the whole body or just certain areas. Pain typically resolves when treatment ends. If it persists or worsens, discuss pain management options with your doctor.
Nausea and vomiting may occur, particularly when drug therapies are combined. Ask your doctor about taking antiemetics (anti-nausea drugs) before treatment begins to prevent nausea and vomiting from happening at all. Severe vomiting can lead to dehydration. Contact your doctor about any of these serious symptoms: more than three episodes of vomiting an hour for at least three hours; blood in vomit; vomit resembling coffee grounds; weakness or dizziness; or being unable to keep your medications down, eat solid food for more than two days or drink more than 8 cups of fluid or ice chips in 24 hours.
Neutropenia is a low number of neutrophils, a type of white blood cell. Neutrophils play an important role in preventing infection. Having an abnormally low number increases the risk of infection. Neutropenia also makes it more difficult for an infection to resolve if bacteria do enter the body. You can reduce your risk of getting an infection by frequent hand washing, avoiding crowds and using extra precautions to avoid injuries.
Skin reactions are common with some types of immunotherapy and targeted therapy. Be alert for changes in skin color, inflammation, blistering, hives, dryness, cracking around fingertips, flushing or redness. A corticosteroid, numbing medicine, antihistamine, medicated cream or antibiotic may be recommended. Most reactions are mild to moderate, but some can become severe without early treatment.
Sleep problems can occur during treatment. The most common are insomnia (inability to fall asleep or stay asleep), disruption of the wake-sleep cycle and excessive sleepiness. Contact your doctor if you have more than a few disruptions.
Take Care of Your Emotional Well-Being
Your diagnosis may stir up a variety of unexpected feelings, such as stress, anxiety and sadness. Your life circumstances are changing, and this can be unsettling. It is important to recognize the effect that physical changes can have on your self-esteem and body image. For example, treatments may leave scars, discoloration of the skin, hair loss or lymphedema, which can all affect mood and self-image.
All these feelings are completely normal and must be addressed for the sake of your emotional health. Although physical health is the priority, realistically your emotional well-being may suffer as well when you are worried or concerned about your appearance.
Family and friends are wonderful sources of support, but they can only understand so much. Find a support group for melanoma survivors online or in your area. Opening up to people who have had a similar experience can offer comfort and support that is invaluable. Talking with a licensed counselor may also help you work through difficult emotions.
Contact your doctor about excessive crying or continued feelings of hopelessness or despair. Get immediate medical attention for thoughts of suicide or death. And remember, receiving a cancer diagnosis and treatment is like being on a rollercoaster. You’ll have ups and downs that may be unpredictable, but you don’t have to go through them alone.