STEP 4: Supportive care
As a myeloma patient, you need support to alleviate the physical and emotional impact of living with this illness. The IMF encourages early use of supportive care measures, which are just as important as initiating therapy. This section covers care guidelines for managing signs and symptoms of myeloma.
Myeloma is characterized by a unique form of destructive bone disease that occurs in the majority of patients. Clinicians have attempted to devise therapeutic approaches in myeloma to relieve disabling symptoms, in particular severe bone pain, thereby improving quality of life. New therapies are needed for myeloma bone disease, and targets have been identified and are being addressed in clinical trials.
Bone lesions and bone loss
Up to 90% of myeloma patients develop bone lesions during the course of their disease; 70% have bone loss in the spine. A vertebral compression fracture (VCF) occurs when the vertebra fractures, or collapses, because the bone is too weak to withstand the pressure or stress placed upon it. With multiple fractures, the spine shortens and becomes misaligned, causing a curvature of the spine known as “kyphosis.” Pain occurs both suddenly, as a result of the movement of the fracture fragments, and often secondarily, as a result of the deformity, causing a chronic dull ache in the facet joint of the vertebra.
Cancer-related or treatment-related fatigue is a persistent sense of tiredness or exhaustion that is not proportional to recent activity and interferes with usual functioning. Common causes of fatigue in myeloma patients are the following:
- Myeloma-induced anemia
- Treatments for myeloma
- High levels of cytokines
- Persistent pain
- Other medical problems and medications for them.
Weakness is often a component of fatigue. If your fatigue is the result of a source other than anemia, there are no laboratory tests that can be used to diagnose it. Your healthcare team must try to identify the source or sources of your fatigue and find ways to manage it most effectively.
Patients need to openly discuss their feelings of fatigue and weakness with members of their healthcare team. Do not think that feeling tired and weak is not important enough to mention at your appointments. Do take note of the following:
- Time when fatigue is most noticeable
- Medications that you are taking
- Emotional stress, anxiety, or depression
- Presence and location of physical pain
- Existence of other conditions or illnesses
- Sleep disturbances
- Dietary changes
- Changes in weight
- Changes in activity or daily routine
- Changes in health.
At least 60%-70% of patients with myeloma have anemia at the time they are diagnosed. Treating the myeloma may also treat the anemia. If the anemia is related to your treatment, your physician may adjust your therapy or support you with a transfusion of red blood cells. If your physician suspects you have anemia, your blood will be drawn for lab tests.
Be sure to report the following symptoms to your physician:
- Shortness of breath
- Lack of energy and motivation
- Rapid heartbeat
- Swelling of the legs, especially the ankles
- Change in appetite
- Decreased libido.
Gastrointestinal side effects
Novel therapies used to treat myeloma may be associated with gastrointestinal side effects (e.g., nausea, vomiting, diarrhea, and constipation). Do not stop or adjust medications without discussing it with your healthcare provider. Your healthcare provider may change your dose or schedule of medication to help reduce your discomfort.
Nausea and its management
Nausea is an unpleasant feeling in the throat and stomach.
- If you experience general nausea, eat small, frequent meals. Do not eat fatty or fried foods. Avoid strong odors. Do not exercise after eating. Wear loose clothing. Begin appropriate medications before chemotherapy. Use relaxation, acupuncture, biofeedback, and/or guided imagery. Take nausea medications that may be ordered.
- If you experience a loss of appetite, but you are still able to eat normally, adjust dosages of medications, drink enough water and other fluids, and keep track of medications in a daily diary.
- If you experience a decreased ability to eat or drink, see your physician for a physical examination and evaluation.
- If you are unable to eat or drink, call a physician immediately. You may need hospitalization or medications.
Vomiting and its management
- Vomiting is a forceful emptying of the stomach’s contents.
- For vomiting, your healthcare provider may prescribe apreppitant, ondansetron, or granisetron.
- For one episode of vomiting, continue medications for nausea as prescribed.
- For two to five episodes of vomiting in 24 hours, contact your physician immediately. New medications, oral or through the vein, may be needed.
- For six or more episodes of vomiting in 24 hours, contact your physician immediately. Hospitalization may be required to assess fluid status and to rule out bowel obstruction.
Constipation and its management
Constipation is a decreased frequency of defecation accompanied by discomfort and difficulty.
- For constipation, your physician may prescribe docusate, senna, magnesium sulfate, magnesium citrate, lactulose, or bisacodyl.
- For mild constipation, increase your fluid and fiber intake, increase your physical activity, and start stool softeners.
- For moderate constipation, speak with a dietician about your food intake, and consider laxatives and stimulants.
- For severe constipation, your physician may discuss treatment for an impacted colon or assess if your bowel is obstructed. You may need medication changes or a referral to a gastrointestinal specialist. If you are concurrently experiencing dehydration, you may need to have fluids administered.
Diarrhea and its management
Diarrhea is an abnormal increase in the frequency and the amount of fluid in the stool.
- For diarrhea, your healthcare provider may prescribe Imodium, diphenoxylate, or octreotide.
- For fewer than four stools a day, drink more liquids. Avoid caffeinated, carbonated, heavily sugared beverages. Dietary changes may be needed. Discontinue any medications that cause diarrhea. Keep the rectal area clean.
- For four to six stools a day, you may need medications as well as fluids and salts.
- If you have more than six stools per day for more than 24 hours, you should notify a physician. A stool culture will be ordered to see whether diarrhea is the result of an infection. Hospitalization may be considered for fluid replacement. Take very good care of your skin and use disposable pads or diapers. Cancer therapy may be stopped or the dose may be lowered.
Many of the drugs used to treat myeloma can cause myelosuppression, a decrease in bone marrow activity resulting in fewer red blood cells (anemia), white blood cells (neutropenia), and platelets (thrombocytopenia). The risk of myelosuppression varies with each medication. Managing side effects can reduce your discomfort, prevent serious complications, and allow you to receive the best treatment for your myeloma. Your healthcare provider may change your dose or schedule of medication to help manage your symptoms. Do not stop or adjust medications without discussing it with your healthcare provider.
Neutropenia is a decrease in white blood cell count. The greatest concern with neutropenia is infection. If you experience symptoms of infection, contact your healthcare provider immediately. Symptoms can include the following:
- Fever of 100.5°F (38°C) or higher
- Shaking chills
- Redness at a wound site
- Difﬁculty breathing
- Sinus congestion.
Your physician will check your blood counts based on your plan of care and may prescribe antibiotics to prevent infection, and growth factors to stimulate white blood cell growth. To reduce your risk of infection, wash your hands often, avoid crowds, and take antibiotics as prescribed by your healthcare provider.
Thrombocytopenia is a decrease in platelets. Thrombocytopenia is frequently a side effect of treatment with proteasome inhibitors (Velcade, Kyprolis, and Ninlaro). If you experience signs of thrombocytopenia, contact your healthcare provider immediately. Symptoms include:
- Pink urine
- Small red or purple spots on the body (petechiae)
- Bleeding that does not stop with pressure.
Your physician will monitor blood counts based on your plan of care and may prescribe a platelet transfusion. To reduce your risk of bruising or bleeding, avoid taking aspirin, ibuprofen, or naproxen. Avoid activities that can cause bruising or bleeding, such as contact sports, anal sex, and heavy lifting. Participate in gentle exercise only.
Peripheral neuropathy (PN) is a change in feeling in the arms, hands, fingers, legs, feet, toes, lips, or other body parts, often described as pain, numbness, tingling, or burning. Report symptoms to your physician, who may adjust your myeloma treatment to help manage your PN symptoms. These PN symptoms may be caused by myeloma or may be related to the use of medications to treat myeloma:
- Burning pain
- Muscle weakness
- Sensitivity to touch
- Prickling sensations
- Sensation of cold in the feet.
Types of neuropathy
- Tingling, numbness, or pain in your hands or feet
- Trouble hearing; ringing or buzzing in your ears
- Weakness all over.
- Trouble fastening buttons
- Difficulty opening jars or feeling the shape of small objects with your hands
- Trouble walking.
Managing the symptoms
Taking care of PN symptoms will allow you to move more easily and safely, carry out your daily activities, and prevent unnecessary pain and discomfort. The following suggestions may help you:
- Massage the affected area with cocoa butter.
- Take B-complex vitamins.
- Take folic acid supplements.
- Take amino acid supplements.
If symptoms become more severe, your healthcare provider may recommend the following:
- Pain medication or other medication for nerve pain relief
- Stopping treatment for a period of time
- Lowering the dose of treatment
- Physical therapy.
Thrombosis and embolism
Patients with cancer are at an increased risk for venous thromboembolic events (VTE): blood clots (deep vein thrombosis or DVT) that could break loose (“embolize”) and travel to the lungs or brain. Patients with myeloma may have an even higher risk for the occurrence of VTEs than other cancer patients. Therapies used to treat myeloma may increase the incidence of clots.
Types of thromboembolic events and their symptoms
Deep vein thrombosis (DVT)
DVT, a small blood clot in the arm, leg, hand, or foot, is the most common thromboembolic event. Its symptoms include the following:
- Swelling, aching, pain, tightness, or a hard or soft lump in the arm, leg, hand, or foot
- Fast heartbeat
- Veins larger than usual (distended).
Pulmonary embolus is a blood clot that travels to the lungs. Its symptoms include the following:
- Fast heartbeat and fast breathing
- Chest pain or new onset of shortness of breath
- Coughing up blood.
Stroke, or cerebral infarction, is a blood clot that travels to the brain. Its symptoms include the following:
- Change in emotional or mental behavior and confusion
- Severe headache
- Chest pain
- Loss of coordination
- Sudden numbness or weakness.
Risk factors for clot formation
- Lack of activity
- Personal or family history of blood clots
- Taking estrogen compounds (hormone replacement therapy)
- Taking drugs to increase the amount of red blood cells, such as epoetin alfa (Epogen®, Procrit®) or darbepoetin alfa (Aranesp®)
- Recent surgery
- Prolonged air travel.
Treatment of thromboembolic events
Deep vein thrombosis, pulmonary embolism, and stroke are medical emergencies. Symptoms should be immediately reported to your physician. To prevent clots, you may need regular exams and medications chosen based on your individual risk factors.
- For patients with only one risk factor, a daily dose of aspirin (81 or 325 mg) is recommended.
- For patients with more than one risk factor, use of prescribed anticoagulation medications is recommended, such as low-molecular weight heparin or warfarin. Patients taking these medications should be monitored closely for side effects, including bleeding.
Prevention of thromboembolism
- For myeloma patients using dexamethasone in combination with novel agents, it may be helpful to take dexamethasone no more than once weekly.
- In general, effective treatment of the overall disease for myeloma patients reduces risk of thromboembolism.
- Patients with risks for thromboembolic events should also avoid sitting for long periods of time.
- Manage your weight.
- Do light exercise, such as walking, ankle circles, and knee to chest lifts.
- Stop smoking.
- Take medications as prescribed by your healthcare providers.
Side effects of steroids
For many years, steroids have been an important and effective treatment for myeloma, used alone and in combination with other drugs. Steroids cause a wide range of side effects, affecting nearly every system of the body. Identifying the side effects early and managing them quickly will contribute to successful treatment and ultimately improve overall quality of life. Do not stop or adjust your medications before consulting your physician. Commonly prescribed steroids include dexamethasone, prednisone, prednisolone, and solumedrol.
Potential side effects of steroids
- “Let down” or withdrawal effect
- Flushing and sweating
- Difficulty sleeping (insomnia)
- Sexual dysfunction
- Personality changes or mood alterations
- Hyperactivity and jitters
- Difficulty concentrating
- Increased number of white blood cells
- Muscle weakness (myopathy)
- Death of bone tissue (avascular necrosis)
- Muscle cramps
- Weight gain in body or face
- Changes affecting hair
- Blurred vision
- Cataract formation
- Ulcers and heartburn (dyspepsia)
- Gas (flatulence)
- Increased appetite
- Changes in taste
- Higher blood suger levels
- Temporary diabetes or thyroid issues
- Temporary decrease in testicular size
- Swelling of hands, legs, or feet
- Acne or rashes
- Thinning of skin.
Strategies for continuing steroid treatment
- Steroids should be taken with food.
- Steroids can cause sleeplessness and therefore should be taken early in the morning.
- Patients should take medication to prevent gastrointestinal issues.
- Medications may be prescribed to prevent infection, shingles (herpes zoster), and thrush (white coating on tongue, bad taste, and painful swallowing) also.
- Know the signs and symptoms of high and low blood sugar: aggressiveness, confusion, difficulty walking, increased thirst, and frequent urination. If you have known diabetes, consult with your endocrinologist prior to starting treatment with steroids.
- Always report symptoms to your healthcare team as soon they occur.