Most cancer treatments cause some type of side effect. Fortunately, the advances in treatment strategies include ways to prevent and minimize them. Supportive care services are now available to help you with the physical and emotional side effects that accompany your multiple myeloma diagnosis and treatment.
As you discuss treatment options with your doctor, ask about the potential side effects of each. Keep in mind that how you respond to those side effects will depend on many factors, including your specific diagnosis, health history, age and other characteristics. Ask whether telehealth appointments or an online portal are available for reporting symptoms or complications between follow-up visits.
It may also be helpful to keep track of side effects by downloading a side effect tracker at PatientResource.com/Tracker.
Physical Side Effects
Some physical side effects can be disruptive while others are an annoyance (see Table 1). Ask your doctor how you can recognize symptoms, when they might occur and ways you can help manage them.
Potentially Severe Side Effects
Some of the drug therapies used may be accompanied by side effects that can become serious and potentially life-threatening. Talk with your doctor about the signs and symptoms to watch for, how to identify them and those that require emergency care. Make sure you know whom to contact and how, especially after hours. Contact the appropriate person immediately if you experience any symptoms. Prompt treatment is necessary to keep these symptoms from becoming fatal.
Not all potentially severe side effects are ones you can recognize. Some are identified only on lab work and imaging results, so it is crucial to stay on schedule with your follow-up appointments for monitoring.
Because it is important that any treating physician knows you are susceptible to these serious side effects, you are encouraged to carry identification that lists your cancer diagnosis, biomarkers, current treatments, oncologist’s name and contact information, and cancer center.
Following are some of the most common potentially severe side effects of certain cancer treatments.
Infections. Normally, your immune system destroys harmful organisms before they can cause damage. However, because disease and its treatments weaken the immune system, it often cannot destroy them fast enough, increasing the risk for infection.
Infections are generally treatable, but if you experience any of the following symptoms, it is important to talk to your doctor immediately before your infection gets worse or spreads: fever (oral temperature higher than 100.4°F), chills and sweating; flu-like symptoms (body aches, general fatigue) with or without fever; cough, shortness of breath or painful breathing; sore throat or sores in your mouth; redness, pain or swelling on any area of your skin; pus or drainage from any open cut or sore; diarrhea (loose or liquid stools); pain or burning with urination; or vaginal drainage or itching.
Cytokine Release Syndrome (CRS). A cytokine is a type of protein that is made by certain immune and non-immune cells, and it is a part of a healthy immune system. These small proteins help control the growth and activity of your blood cells and immune cells. Some cytokines stimulate the immune system and others slow it down. CRS can occur if the immune cells affected by treatment release too many cytokines into the bloodstream. When this occurs, it can result in a cytokine storm, which can send the immune system into overdrive. It is a common side effect with chimeric antigen receptor (CAR) T-cell therapy and bispecific T-cell engager (BiTE) therapy. CRS can lead to high fever, inflammation, fatigue and nausea that can be severe and damage multiple organs. Without swift medical treatment, CRS can be fatal.
Hepatic Toxicity. Also referred to as liver damage, this may occur with some drug therapies. Symptoms may include rash, fever, stomach pain, nausea and vomiting, jaundice (yellow color in the eyes and skin) and fatigue.
Immune Effector Cell-associated Neurotoxicity Syndrome (ICANS). ICANS is a clinical and neuropsychiatric syndrome that can occur in the days to weeks following treatment with certain types of immunotherapy, especially immune effector cell and T-cell engaging therapies. ICANS affects a person’s nervous system. It is the second most common side effect of CAR T-cell therapy. Symptoms include confusion; behavioral changes; inability to speak or understand speech; attention, thinking and memory problems; muscle weakness, muscle jerks and twitching; headaches; and seizures.
Immune-related Adverse Events. Immunotherapy drugs work by altering the way the immune system operates, and it is possible that they may cause the immune system to attack normal, healthy parts of the body. The most serious of these side effects are called immune-related adverse events. They are rare. Your doctor can manage those that are low-grade reactions. Some, however, can progress and become critical. Knowing the symptoms of these reactions will help you and your caregivers observe the response to the drug and report any potential problems to your doctor.
Doctors grade adverse effects on a scale of 1 to 4, with 1 being mild and 4 being the most severe. How your doctor treats your side effects will depend on how severe they are and which organ or system is affected. Your doctor may pause your treatment, treat the side effects or refer you to a specialist. With careful management, doctors can often resolve immune-related adverse events while preserving the effectiveness of the immunotherapy medication against cancer cells.
Infusion-related Reactions. An infusion- related reaction can occur when your body has a strong, adverse immune response to a cancer treatment that is given intravenously (IV) or by injection into a vein. The types of drug therapy that can cause this reaction include chemotherapy, targeted therapy and immunotherapy.
Reactions are generally mild, such as itching, rash or fever. More serious symptoms include shaking, chills, low blood pressure, dizziness, breathing difficulties or irregular heartbeat. These can even be life-threatening without medical intervention.
Tumor Lysis Syndrome (TLS). This condition can occur after treating a fast-growing cancer, especially a blood cancer. TLS is usually linked with chemotherapy, but other types of treatment may also lead to this syndrome.
As tumor cells die, they break apart and release their contents, including potassium, phosphate and tumor DNA, into the blood. This causes a change in electrolytes and certain chemicals in the blood, which may cause damage to the nervous system, kidneys, heart, liver and other organs or increase the level of potassium in the blood.
|Anemia||Low energy, weakness, dizziness, light-headedness, shortness of breath, rapid heartbeat|
|Blood clots||Leg discomfort, swelling, warmth and reddish discoloration|
|Bone loss and pain||Weakened bone caused by the cancer or treatment|
|Chemo brain||Brain fog, confusion and/or memory problems|
|Constipation||Difficulty passing stools or less frequent bowel movements compared to your usual bowel habits|
|Diarrhea||Frequent loose or watery bowel movements that are commonly an inconvenience but can become serious if left untreated|
|Fatigue||Tiredness that is much stronger and harder to relieve than the fatigue a healthy person has|
|Fever||Raised body temperature that could signal an infection|
|Hair loss (alopecia)||Hair loss on the head, face and body|
|Hypercalcemia||Excessive thirst and/or urination, headaches, nausea/vomiting, severe constipation, confusion, depression or decreased appetite|
|Keratopathy||Changes to the surface of the eye that can lead to dry eyes, blurred vision, worsening vision, severe vision loss and corneal ulcer|
|Nausea and vomiting||The feeling of needing to throw up and/or throwing up|
|Neutropenia||Low white blood cell count that increases the risk of infection|
|Peripheral neuropathy||Numbness, pain, burning sensations and tingling, usually in the hands or feet at first|
|Respiratory problems||Shortness of breath (dyspnea) with or without coughing, upper respiratory infections.|
|Skin reactions||Rash, redness and irritation or dry, flaky or peeling skin that may itch|
|Thrombocytopenia||Low number of platelets in the blood, which can lead to bruising and bleeding|
Palliative Care vs. Hospice Care
Supportive care services are also referred to as palliative care, and these services are often confused with hospice care. Palliative/supportive care can benefit anyone with a serious or life-threatening illness. It is available at any time, whereas hospice care is reserved for end of life.
The loss of bone is a common side effect of multiple myeloma and its treatments. Although the damage usually cannot be prevented, certain things can help reduce bone pain and protect you from related injuries.
Q: What causes bone loss?
A: Multiple myeloma causes lytic lesions (holes in the bones). Additionally, certain drug therapies may cause thinning of the bones. Chemotherapy can reduce calcium levels in the body, which can lead to bone loss. Steroids can interfere with the body’s ability to absorb calcium, which could result in bone loss.
Radiation therapy only affects the part of the body that was treated. Your doctor may order a bone density scan, also known as a dual-energy X-ray absorptiometry (DEXA) scan, before treatment begins to get a baseline measurement of your bone mass to compare with measurements taken later.
Inactivity, or a lack of physical activity, can also contribute to bone loss.
Q: When does bone loss typically occur?
A: The rate of bone loss differs depending on each person’s unique characteristics, including age, bone health before diagnosis, menopausal status and treatment.
Cancer treatment often increases the risk of osteopenia (mild bone degeneration) or osteoporosis (severe bone loss). Radiation therapy typically does not immediately affect bone health. Deterioration can take several years, making it important to continue to follow up with your doctor to check for thinning.
Q: How is bone loss treated?
A: Bone-modifying (strengthening) drugs can help treat bone problems and prevent further damage from occurring. Your doctor will monitor you regularly to detect bone problems. The standard test is a bone scan, which can detect bone metastasis before pain or other symptoms occur. Sometimes, a positron emission tomography/computed tomography (PET/CT) or magnetic resonance imaging (MRI) may be needed to determine whether cancer has spread to the bone.
Q: How can you manage bone loss?
A: You can be an active partner in your own care by doing the following:
- Eat foods that are rich in vitamin D to help your body absorb calcium.
- Choose healthy habits. Avoid smoking and other tobacco products, and limit your alcohol consumption.
- Maintain a healthy body weight. Being underweight increases your risk of bone loss.
- Walk, jog or perform other weight-bearing exercises to help stimulate cells that help grow bones and build muscle.
- Take safety precautions to prevent falls, including installing grab bars in the bathroom, clearing clutter from the floor, using a nightlight, securing or removing rugs, and limiting activities after taking medications that make you tired or dizzy.
- Report pain to your doctor as soon as it occurs.