The Symptoms and Side Effects of
and What You Can Do about Them
When you’re going through treatment for multiple myeloma, listen to your body. Keep a journal of how you feel physically and emotionally. Keeping notes can help you keep track of how you’re doing over time and of symptoms or side effects that may come and go. This can help you work closely with your doctor to manage the side effects that you experience from multiple myeloma or its treatment, and ensure that your questions are answered.
Pain can result from the myeloma itself or from nerve damage caused by the disease or its treatment. It can also occur after a bone marrow biopsy. Let your healthcare team know how you feel so they can suggest ways to relieve or reduce your pain.
Think of your pain in terms of a 10-point scale, with no pain having a score of 0 and extreme pain having a score of 9 or 10. You’ll also want to track the location of the pain, its frequency and duration, the type of pain it is (Is it burning or stabbing? Sharp or dull?), and what makes the pain change (Does medication relieve the pain?).
Some people get pain relief from complementary medical techniques such as Qi Gong or acupuncture. Talk with your doctor before considering this type of pain-relief strategy. You may also benefit from relaxation strategies, such as deep and slow breathing, meditation, or hypnosis. Ask your healthcare team for recommendations; many treatment facilities have these resources on site. If you’re feeling depressed about your pain, talk with an oncology social worker or an experienced psychologist.
Bone weakness is a common problem for people with multiple myeloma. Regular physical fitness, including daily walks, yoga, or exercise that is more strenuous (if comfortable and approved by your doctor) will help to keep bones strong and help you feel less frail.
Because previously healthy cells can usually repair themselves after chemotherapy ends, many side effects of chemotherapy are temporary and can be managed.
Bisphosphonates, such as pamidronate (Aredia) and zoledronic acid (Zometa), are commonly used drugs that work to maintain bone strength by slowing the way multiple myeloma cells dissolve and weaken bones. Treatment with bisphosphonates helps to prevent further bone damage; however, bisphosphonates have been found to cause potentially severe dental problems. It’s important to inform your dentist about your use of bisphosphonates and to have a dental exam before starting these drugs. Maintaining good oral health while using these drugs is also important. If a tooth or gum infection occurs, your doctor may want to stop bisphosphonate treatment.
Myeloma and its treatment can lead to anemia, which means that your red blood cells aren’t carrying enough oxygen through your body. This makes you feel very tired. Other symptoms of anemia include shortness of breath, feeling your heart pound, feeling dizzy or faint, or having difficulty concentrating.
If you’re concerned about anemia, there are medications that can help, or sometimes a blood transfusion is recommended. Your healthcare team will routinely assess if you are experiencing a low red blood cell count through blood tests.
People with multiple myeloma may experience very low white blood cell counts due to the disease and its treatment, making them more susceptible to infections. Your healthcare team may advise you to stay away from crowds and people with colds or other contagious diseases. If an infection develops, it can be serious and should be treated promptly.
Some people with multiple myeloma may develop kidney problems due to the disease, treatment for the disease, or a combination of both. The kidneys help regulate the body’s hydration and water balance and are responsible for getting rid of the body’s waste. When the kidneys can no longer do this, excess fluid can build up in tissues (edema) and you may notice swollen feet or ankles, or you may be short of breath if fluid builds in the lungs. If kidney problems are severe, you may need dialysis, which artificially removes waste and excess water from the blood.
A person with serious end-stage kidney problems may need a kidney transplant. This is a very challenging process for someone whose immune system is compromised from multiple myeloma. You and your doctor should discuss the potential benefits and the risks of a kidney transplant if this is warranted.
Too Much Calcium in the Blood
When calcium leaves the bones and enters the bloodstream due to multiple myeloma, you may experience many troublesome side effects. You may lose your appetite or feel nauseated, restless, or confused. A high calcium level can also make you very tired, weak, dehydrated, and thirsty. If you have a high level of calcium in your blood, you will be asked to drink a lot of fluids and take medications that lower calcium levels in your blood. These things can relieve your discomfort.
Some people with myeloma may develop amyloidosis, which is the collection of abnormal proteins in tissues of the body. For example, proteins can build up in the heart, causing chest pain and swollen feet. There are drugs to treat amyloidosis, as well as supportive measures that may help.
Side Effects of Chemotherapy
Side effects from chemotherapy often result from damage to healthy cells. Some examples include damage to the cells in your mouth (resulting in mouth sores), your hair follicles (resulting in hair loss), and the cells in your gastrointestinal tract (resulting in vomiting, diarrhea, and constipation). Because previously healthy cells can usually repair themselves after chemotherapy ends, many of these side effects are temporary and can be managed.
Every drug causes a unique set of side effects. Talk with your oncology nurse about the side effects you may experience based upon your treatment plan. If you are enrolled in a clinical trial, the research nurse will talk with you about side effects. Ask for information about the best way to manage potential problems even before they begin so you can feel prepared and avoid difficulties.
Side Effects of Stem Cell Transplant
There are several potential risks from a major procedure such as a stem cell transplant, but there are also many longer-term benefits. Talk with your doctor and nurse about what you should expect from the procedure, how to prepare for it, what recovery will be like, and what side effects to plan for.
Tip Sheet for Multiple Myeloma Side Effects
Ways to Get Relief from Your Pain
- Don’t ignore pain. Keep a journal to track it, and tell your doctor and nurse about any pain you’re experiencing.
- Ask if the use of heat or cold would help.
- Ask about drugs that fight pain anywhere in the body.
- Ask about a brace that may relieve pain in the neck or back.
- Ask if radiation therapy aimed at the bone might help reduce pressure.
- Ask if surgery to fix a compressed (squeezed) spinal cord may help.
Tips for Protecting Your Kidneys
- To protect your kidneys, or preserve your health on dialysis, lifestyle and diet changes help.
- Eating fruits, vegetables, and whole grains is important to the health of your body and your kidneys.
- Aim to reduce your intake of salt, animal protein, dairy, fat, and processed foods.
- Maintain a healthy blood pressure, cholesterol level, and blood glucose level.
- Maintain a healthy body weight.
- Try to exercise daily. Walking is a great option.
- Keep hydrated within recommended daily amounts. Drink water and juice, but avoid alcohol and caffeinated beverages.
- If you’re thirsty but have been told not to drink more than a certain amount of fluid, suck on a lemon or ice chips, or chew gum.
- Take the medications prescribed to you in the proper dose, and learn why they may help.
Tips for Managing Anemia
- Get plenty of rest.
- Ask for help from friends or family when your energy is low.
- Eat a nutritious diet with iron-rich foods, and drink plenty of fluid.
- Stand slowly to avoid feeling dizzy after sitting or resting.
- Ask your doctor if medication would help.
- Keep track of how you feel, and let your healthcare team know when you’re too tired to accomplish daily tasks.
Tips for Facing a Stem Cell Transplant
- Read all materials given to you by your healthcare team about what to expect.
- Suck on ice before receiving chemotherapy, to keep your mouth moist and cool and prevent chemo-related problems such as mouth sores or tongue swelling.
- If you are in the hospital while you recover, you can stay in touch with friends and family through Skype or texting. Ask your doctor if visitors are allowed.
- Learn whether you will need the help of a caregiver during your recovery period and if the hospital has a social worker or case manager who can help you.
- Learn whether you will need to take time off work (and for how long).
- Take naps and be patient as your level of energy builds.
- As your recovery progresses, start slowly with light exercises in your home, build up to walks, and then aim to increase your exercise and strength as you feel capable.
- Eat well-cooked foods until you’re told that it’s OK to add raw foods to your diet. Learn if you should follow the neutropenic diet (eating well-cooked foods, pasteurized dairy products, and purified water) to protect yourself from bacteria and fungi that may be present in food while your white blood cell counts are low.
Precautions to Take to Prevent Infections
- Wash your hands frequently and thoroughly (15 seconds of scrubbing) with soap and water before eating, after using the bathroom, and after a sneeze or cough.
- Use hand sanitizer when washing with soap and water is not convenient.
- Avoid things that may cause cuts, and use antiseptic immediately if you do get a cut.
- Keep your mouth clean by brushing your teeth regularly and rinsing with mouthwash.
- Avoid eating and touching uncooked meat, chicken, eggs, and seafood.
- Avoid people with colds.
- Ask about vaccinations for things like the flu or pneumonia. Remember that you should not receive any vaccinations without your oncologist’s approval.
- Ask about medications to increase your white blood cells.
- Tell your healthcare team immediately when you experience any signs and symptoms of infection. This is not the time to “watch and wait.”
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Reprinted with permission from Frankly Speaking About Cancer: Multiple Myeloma © 2013 Cancer Support Community. For more information, visit CancerSupportCommunity.org.
This article was published in Coping® with Cancer magazine, January/February 2014.