It’s also important to realize that having a side effect does not mean that the immunotherapy is or isn’t working. Some people may experience little to no side effects with successful treatment.
The goal is to treat the cancer successfully with as little discomfort and disruption as possible. Noticing and treating side effects from immunotherapy early often results in a better outcome because you may be able to avoid an interruption in treatment.
The following are some of the side effects that may be associated with immunotherapy.
Immune-related adverse events (irAEs), the most serious of the possible side effects, are not common but can occur when the immune system is overstimulated by the treatment. This may cause inflammation, swelling or redness, which may be painful. Some people may not be able to physically feel these symptoms, so making and keeping regular checkups with your doctor is extra important.
The systems affected by immune-related adverse events and common symptoms are as follows. Ask your doctor for a complete list of symptoms and side effects that may apply to you.
- Cardiovascular (cardiomyositis): Chest pain, shortness of breath, swelling in the legs, palpitations (rapid heartbeat), changes in EKG reading
- Endocrine (endocrinopathies): hyperthyroidism, hypothyroidism, extreme fatigue, persistent or unusual headaches
- 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 or tingling, pain, burning, 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 (pneumonitis): chest pain, shortness of breath
- Renal (kidneys) (nephritis): Decrease in urine output, blood in urine, swelling in ankles, loss of appetite
- Skin (dermatitis): Rash, skin changes
Fatigue is the most common side effect reported in multiple immunotherapy agents, including checkpoint inhibitors and cytokines. Fatigue associated with cancer is different than simply feeling tired and may cause you to feel physically, emotionally or mentally exhausted. Fatigue can be caused or worsened by several factors.
- The extra energy your body uses to repair healthy tissues damaged during treatment
- Other side effects, such as pain, nausea and vomiting
- Medications to relieve side effects
- The interaction of two or more medications
Flu-like symptoms, such as fever, chills, aches, headache, drowsiness, nausea, vomiting, runny nose, loss of appetite and low or high blood pressure, may occur with cytokines. The exact process of how flu-like syndrome develops is not fully known. However, it’s generally believed that certain medications affect the body in a similar way as the flu virus. Both cause an inflammatory reaction in the immune system, which spurs a variety of symptoms.
Diarrhea is common with checkpoint inhibitors and cytokines, and can vary in severity and duration. It can lead to severe dehydration and electrolyte imbalance but also could be a signal that your immune system is going into overdrive. Call your health care team if you experience symptoms that interfere with your daily activities, such as severe abdominal cramping or episodes that make you fearful of leaving your home.
Mild skin reactions, such as bumpy or itchy red rashes, may occur. These reactions can be common with checkpoint inhibitors. Other skin problems include yellowing or changes in skin color, inflammation, blistering, hives, pale patches, dryness, cracking of the fingertips, sun sensitivity and flushing or redness. Although rarely severe, these symptoms can be uncomfortable. Your doctor may recommend a corticosteroid, numbing medicine, antihistamine, medicated creams or antibiotics.
Nausea and vomiting may be caused by immunotherapy and other drug therapies, such as chemotherapy and targeted therapy. It is much easier to prevent nausea and vomiting than to control them once they’ve started. Recent advances have led to the development of antiemetics, which can help prevent and control them.
Constipation is a symptom many people experience. It is characterized by difficulty passing stools or a decrease in bowel movement frequency as compared to your normal bowel schedule. People often refer to constipation issues as “feeling backed up,” and it sometimes is accompanied by pain, cramping or swelling of the abdomen.
Although it is a very common symptom, constipation can be extremely uncomfortable and can affect your quality of life. If left untreated, it can even cause serious medical issues, such as a bowel obstruction. It is important to talk to your doctor about constipation and to manage your symptoms as they occur.
Muscle and joint pain may occur. Myalgia is the medical term for any type of muscle pain and may include consistent, deep and throbbing or random, piercing pain. It can affect small or large areas or your entire body. Your muscles may feel weak or tired, and pain may range from mild to severe. Often, symptoms of myalgia also include pain in your joints, which is known as arthralgia.
Myalgia and arthralgia caused by treatments or medications typically resolve once treatment ends. There are options for pain management during treatment, however, so talk to your doctor if your muscle or joint pain persists or worsens. Keep a record of the pain you’re experiencing. Write down information about the type of pain you have, where you feel it, the severity and how long it lasts, how it affects you and any possible triggers. Your doctor will ask you questions about your pain to determine the best way to treat or manage it.
Infusion-related reactions refer to any unexpected reactions after receiving a drug and are generally due to an immune response against the drug. The reaction usually, but not always, occurs rapidly after exposure to the drug. The symptoms may be mild, consisting of minor itching, skin rash, fever and chills or more serious, such as shaking chills, low blood pressure, dizziness, difficulty breathing and irregular heart beating. The likelihood of such a reaction may differ based on the drug. Treatment may include stopping the drug, giving it more slowly, use of analgesics and antihistamine medication, or sometimes corticosteroids.
Injection site reactions can be painful and distressing. Although most are not serious, check with your doctor because your health care team may choose to modify your treatment to prevent further reactions.
Coughing can be a symptom of some immunotherapies. A cough may be an indication of pneumonitis, which is inflammation of the lungs. Any coughing or difficulty breathing should be reported to your doctor.
SIDEBAR: EMOTIONAL SIDE EFFECTS
People often expect physical side effects from cancer and its treatment, but emotional side effects are also likely to occur before, during or after treatment. Common emotional side effects include the following.
Anxiety is often described as feeling nervous, stressed, worried and/or tense. Symptoms of anxiety may include faster heartbeat, feeling sick to your stomach, having difficulty concentrating, feeling tightness in your chest area, or feeling shaky or dizzy. Being anxious may make it difficult to cope with treatment, deal with daily life or prevent your body from healing properly after treatment.
What to try:
- Explore relaxation techniques, such as deep breathing, meditation, muscle relaxation, hypnosis, biofeedback and yoga.
- See a mental health specialist.
Depression is more complex than just feeling sad or hopeless, but these emotions can accompany it, along with feelings of panic, hopelessness and discouragement. Depression can result from low hormones, a chemical imbalance in the brain, uncontrolled pain and other unrelieved symptoms. It can range from mild to severe. Many antidepressants are available, and each has its own side effects.
What to try:
- Perform regular physical activity, breathing exercises or meditation.
- Contact your doctor immediately if you have thoughts of hurting yourself or others.
Emotional paralysis is a feeling of being overloaded and out of control. This is a common feeling after being diagnosed with cancer, and it can occur while going through treatment. Learning new medical terms, undergoing treatment and coordinating multiple medical appointments may feel overwhelming.
What to try:
- Take charge of the things you can control.
- Ask your doctor to explain your diagnosis and treatment plan.
Fear is a common reaction to finding out you have cancer. It is also a normal side effect of going through treatment. Fears associated with treatment include not knowing what to expect, pain during or after treatment, inability to do daily activities while in treatment, a change in appearance (hair loss or scars), fertility issues or sexuality challenges.
What to try:
- Become informed. Learn as much as you can about your cancer and your treatment.
- Talk to others going through similar treatment.
Grief is the feeling of distress or sorrow due to the loss of something. It is normal to grieve the loss of your health, your appearance or your ideas of what your future would be without cancer.
What to try:
- Allow yourself to feel a full range of emotions.
- Ask your friends and family for support.
Guilt is the sense that you’ve done something wrong. You may feel responsible or blame yourself for developing cancer due to actions you did or didn’t take regarding your health or lifestyle. You may also feel you are upsetting loved ones or that you are a burden to them. Some people may feel guilty about not having a positive attitude all the time. In some cases, patients may be envious of other people’s good health.
What to try:
- Talk with a counselor.
- Be kind to yourself when you don’t have a positive attitude during treatment.
Loneliness is a feeling of being alone and isolated from others. Cancer patients often feel alone or alienated from others for several reasons. You may feel your diagnosis prevents you from living the life you once had. If friends avoid visiting or calling, you might feel no one understands.
What to try:
- Talk to others who have the same type of cancer as you.
- Contact a member of your faith or spiritual community.
Uncertainty is the feeling of hesitation, indecision or doubt. You may be uncertain of how the treatment will go and about your future. That can lead to feelings of fear, anxiety or anger.
What to try:
- Educate yourself about the type of cancer you have.
- Consider joining a support group.
Although many emotional side effects are negative, some survivors report having positive emotions, such as gratitude, hope, peace, appreciation and clarity about life and goals. Many survivors find strength they never dreamed they had, and they develop lasting relationships with people they’ve met as a result of their diagnosis. However, don’t expect to have positive feelings right away or ever. Everyone is different.
If you experience any of the negative emotional side effects, talk to a member of your health care team. They are trained to help you and to find the resources you need to be better prepared to complete your treatment. Some experts they may recommend include chaplains, social workers, psychologists and psychiatrists.