Multiple Myeloma

Symptoms & Side Effects

When you’re newly diagnosed with multiple myeloma, it’s normal to be concerned about how you’ll be affected by your treatments and by the disease itself. Each person’s experience is different, but most symptoms can be prevented, minimized or managed with some planning and help from your doctors and supportive care professionals (See Supportive Care). Successfully managing your symptoms can make a big difference in your quality of life. Be your own best advocate by communicating frequently and openly with your health care team about how you’re feeling.

Potentially Severe Side Effects

Severe treatment-related side effects aren’t common, but they can occur. They can develop rapidly and become serious, even life-threatening, without swift medical intervention. Talk with your doctor about your risks, learn early warning signs and find out exactly what to do if you experience symptoms.

Infection can occur as a result of low white blood count (neutropenia). Contact your doctor immediately – do not wait until the next day – if you have any of these symptoms: oral temperature over 100.5°F, chills or sweating; body aches, chills and fatigue with or without fever; coughing, shortness of breath or painful breathing; abdominal pain; sore throat; mouth sores; painful, swollen or reddened skin; pus or drainage from an open cut or sore; pain or burning during urination; pain or sores around the anus; or vaginal discharge or itching.

Immune-related adverse events (irAEs) can occur with certain types of immunotherapy if treatment overstimulates the immune system. This may cause inflammation, redness or swelling, which can be painful. irAEs can develop rapidly, becoming severe and even life-threatening.

You may not be able to physically feel these symptoms at first, so it’s important to schedule and keep all medical appointments as irAEs may be diagnosed based on routine laboratory tests and X-rays. Be sure to contact your medical team if symptoms occur between appointments. Remain alert to the possibility of irAEs for two years after treatment ends, and report symptoms immediately to your doctor.

Cytokine release syndrome is associated with immune checkpoint inhibitors, which are a type of immunotherapy. Reactions are usually mild but can be severe. Symptoms may include headache, fever, nausea, rash, low blood pressure, rapid heartbeat or difficulty breathing.

Infusion-related reactions most frequently occur with monoclonal antibodies given intravenously (by IV). Most reactions are mild, but some can be serious or even fatal without medical intervention. Call your doctor immediately if you have any of these symptoms: shortness of breath or trouble breathing, dizziness or lightheadedness (hypotension), cough, wheezing, throat tightness, runny or stuffy nose, headache, itching, nausea, vomiting, chills or fever.

Tumor lysis syndrome is very rare but can become life-threatening. Symptoms may include vomiting, diarrhea, muscle cramps or twitches, neuropathy and decreased urination.

More Common Side Effects

The following side effects are more commonly seen with the disease and its treatments. They may be more intense when therapies are combined.

Anemia results from an abnormally low red blood cell count. Red blood cells carry oxygen to the body’s tissues. Anemia can be temporary or long-lasting, causing low energy, weakness, dizziness, light-headedness, shortness of breath and rapid heartbeat.

Blood clots are a risk for people with multiple myeloma, especially those who have a history of them or are newly diagnosed. Deep vein thrombosis (DVT) is a blood clot that occurs in a deep vein in the body, usually the legs or pelvis. DVT can be caused by physical inactivity, abnormal clotting or an injury to the blood vessels but may also be a side effect of certain treatments. Initial symptoms may be minor, so it’s important to speak to your doctor immediately if you experience any discomfort in your legs.

Bone pain and fractures are common because the disease begins in plasma cells in the bone marrow, causing bone loss and damage over time. Warning signs of bone deterioration include joint or back pain, arthritis-like symptoms, slouched posture, shorter stature and broken/fractured bones. Report bone pain as soon as it occurs. Pain management specialists are dedicated to keeping you comfortable while helping prevent further bone damage. Your doctor may prescribe medication to strengthen bones.

Cognitive dysfunction, often referred to as chemo brain, involves problems with normal thinking processes, such as thinking clearly, finding the right word or remembering names, dates and other details. Although associated with chemotherapy, it can result from other treatments. Make lists and avoid multi-tasking.

Constipation may occur, especially if you’re taking strong pain medication. Talk with your health care team about preventive measures to take such as dietary and/or lifestyle changes. If you are already constipated, ask how to manage it.

Diarrhea can seriously affect your quality of life. If diarrhea causes distress or keeps you homebound, tell your doctor, who may check for a Clostridium difficile (C. diff) colon infection. Severe diarrhea can lead to dehydration and loss of essential nutrients. Ask about preventive medications and how to rest your bowels, which can reduce and help eliminate symptoms. In time, you may be able to predict when diarrhea will begin based on when you received treatment, then plan accordingly.

Dyspnea is the medical term for difficult or labored breathing or shortness of breath. If you have difficulty breathing, tell your medical team. They can determine the cause of dyspnea and help you manage it.

Emotional effects may range from anxiety and fear to anger and depression. These feelings are normal, and it is important to find healthy ways to express them, such as deep breathing, yoga, listening to music and physical exercise. Cancer support groups are valuable resources for working through your feelings. Talk with your doctor if feelings of hopelessness or depression last more than a few days. Seek medical attention immediately if you have thoughts of suicide.

Fatigue related to treatment lasts longer than typical tiredness, is more severe and may not be relieved by sleep. Make sure your doctor is aware of your fatigue so that possible underlying causes, such as anemia or depression, can be addressed or ruled out. Exercise is a proven fatigue fighter.

Fever can result from certain drug therapies, and can be particularly concerning if your white blood cell count is low. Before treatment, ask your health care team about your potential risk for fever so you’ll know how to respond. Even a mild fever after chemotherapy warrants contacting your doctor immediately — don’t wait until the next day. Check your temperature if you feel warm or unwell. Acetaminophen or other medications may be recommended for fever with flu-like symptoms, but avoid taking non-steroidal anti-inflammatory drugs (NSAIDs) and aspirin if you have a bleeding disorder.

Hair loss (alopecia) may occur on your head, face and body because certain treatments destroy rapidly growing cells. For a wig, ask your oncologist for a prescription for a “cranial prosthesis due to alopecia from cancer treatment,” as this phrasing may make it eligible to be partially or fully covered by health insurance.

Hypercalcemia (high levels of calcium in the blood) may occur as myeloma cells cause bone damage and loss, which releases high levels of calcium into the bloodstream. The condition can affect the entire body, causing kidney, stomach and heart problems, resulting in a coma or even death. Contact your doctor immediately about warning signs, such as excessive thirst and/or urination, headaches, nausea/vomiting, severe constipation, confusion, depression or decreased appetite.

Kidney function is often affected by the disease or its various complications, putting the kidneys at risk of becoming overworked and ultimately failing. Contact your doctor if you experience increased fatigue, shortness of breath, increased thirst, more frequent urination, dehydration, constipation, stomach pain or decreased appetite. If tests indicate reduced kidney function, options may be recommended for reversing or minimizing further damage.

Nausea and vomiting are more easily prevented than controlled, so ask about using antiemetics (anti-nausea drugs) before treatment begins. 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; inability to drink more than eight cups of fluid or ice chips in 24 hours; inability to eat solid food for more than two days; weakness or dizziness; or being unable to keep medications down.

Neutropenia is an abnormally low white blood cell count, which increases your risk of infection and makes an infection harder to resolve. Talk with your doctor about symptoms to watch for and when to seek emergency care.

Peripheral neuropathy can result from certain treatments or the disease itself, as myeloma cells may produce a protein that damages nerve cells and causes neuropathy. Symptoms may include tingling, numbness, pain or a burning sensation, often in the hands or feet at first. Normal activities, such as buttoning clothes, writing, walking and/or keeping your balance, can be difficult. Talk to your doctor if these symptoms occur.

Skin reactions can include redness and irritation (similar to sunburn), rash, itching or dry, flaky skin. Most symptoms are mild to moderate, but some can be severe or even life-threatening without early treatment. If you have neutropenia when any reactions occur, seek immediate medical attention.

Thrombocytopenia is a low number of platelets (thrombocytes) in the blood, which can result from the disease or certain treatments. Symptoms include bruising, bleeding and clotting problems. Patients with thrombocytopenia should avoid taking Omega 3 supplements, aspirin and other blood thinners. If tiny speckled spots or large bruises appear on your arms or legs while undergoing chemotherapy, notify your doctor immediately. Inform your health care team about all nonprescription medicines and supplements you take, as some may add further complications.

 

Prevent Falls to Avoid Injuring Weakened Bones

Bones weakened from multiple myeloma are prone to fractures, which increases your risk of serious injury in a fall. Take these safety precautions at home to help prevent falls.

  • Clear clutter from hallways, stairs and floors.
  • Tape down cords and/or wires.
  • Secure rugs to the floor or remove them.
  • Repair broken or uneven stairs.
  • Install sturdy handrails on both sides of stairways.
  • Place non-slip mats in showers and bathtubs.
  • Install grab bars next to toilets, bathtubs and showers.
  • Use a shower chair.
  • Enlist others for chores requiring a stepstool or ladder.
  • Wear shoes until bedtime, avoiding open-heeled shoes and slippers.
  • Set up nightlights on the path from the bedroom to the bathroom.
  • Limit activity after taking medications that make you sleepy or dizzy.

 

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