Multiple Myeloma
Supportive Care
Most cancer treatments have side effects. Fortunately, the advances in treatment strategies include ways to prevent and minimize the effects of treatment. Supportive care services are now available to help you with the physical and emotional side effects that accompany your 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.
Potentially Severe Side Effects
The drug therapies used for treating cancer are powerful. Some can even be accompanied by side effects that may become serious and potentially life-threatening. If any of your therapies have the potential to cause a severe effect, it is critical to discuss with your doctor what to watch for before treatment begins.
Not all potentially severe side effects are ones you can recognize. Some are only identifiable 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 a 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.
You can use the Patient Resource form by downloading it at: PatientResource.com/Wallet_Card.
Following are some of the most common potentially severe side effects of certain multiple myeloma 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.
Adverse effects are graded 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 the affected organ or system. 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.
Certain immunotherapy medications, as well as CAR T-cell and BiTE therapy, can cause potentially severe side effects. Some are listed below.
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. CRS can lead to high fever, inflammation, fatigue and nausea that can be severe and can damage multiple organs. Without swift medical treatment, CRS can be fatal.
Hepatic Toxicity. Also referred to as liver damage, 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 and 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. Because immunotherapy drugs work by altering the way the immune system operates, 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. 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.
Common Side Effects
| Side Effects | Symptoms |
| 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 (cognitive dysfunction) | 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 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 |
Prepare to feel a range of emotions
Cancer takes a toll on more than your body. It also affects your well-being, self-confidence and overall mental health. At times you may feel scared, angry or depressed, while at other times you may feel hopeful. It is important to find support to help you learn to manage your emotions. Simply knowing you have resources and a plan can ease your distress.
Many forms of cancer support are available, both in person and online. Some organizations offer one-on-one buddy programs that pair you with another person who also has multiple myeloma. Sharing your feelings with people who have been through something similar can be emotionally healing. Advocacy groups and national organizations are also available.
Seek medical attention immediately if you feel depressed or hopeless for more than a few days or have thoughts of suicide.
