Multiple Myeloma

What is Multiple Myeloma?

Multiple Myeloma (MM) is a blood cancer that starts in the plasma cells of bone marrow. This is the spongy material in the center of bones. The marrow makes stem cells. They mature into red blood cells, white blood cells, and platelets. Myeloma cells are abnormal platelets. With Multiple Myeloma, the abnormal cells crowd out healthy cells, and cause many problems:

  • Bone pain and fractures
  • Anemia (low red blood cell count)
  • Uncontrolled infections
  • Kidney damage
multiple myeloma infographic

Risk Factors

The cause for multiple myeloma is unclear, but the risks for getting multiple myeloma include:

  • Age: Most patients are age 60 or older
  • Gender: Occurs more among men than women
  • Weight: Being obese
  • Race: African Americans are twice as likely to get MM
  • Weight: Being obese or over weight
  • Genetics: People with a family history of multiple myeloma (hereditary or genetic connection)
  • Medical conditions: People with MGUS or Monoclonal Gammopathy of Undetermined Significance. MGUS is when abnormal M proteins are present, but not enough to be diagnosed as “blood cancer.” 1 in 100 people with MGUS can develop blood cancer.

Symptoms

Multiple myeloma symptoms depend on the stage of your disease and your body’s response. Symptoms for multiple myeloma are known as “CRAB” symptoms. These include: high levels of calcium, renal (kidney) problems, anemia, and bone problems.

 

CRAB symptoms for active myeloma

Diagnosis and Staging

Your doctor will talk with you about your health. They’ll order different kinds of blood tests if they suspect a blood cancer. They might also run urine tests, scans, a bone marrow biopsy, and biomarker tests on your bone marrow. Your test results will help determine the best treatment plan for you.

Lab Tests

    • The complete blood count (CBC) counts the number and types of blood cells in a blood sample. See our CBC page for information on normal results.
    • The serum protein electrophoresis (SPEP) finds and measure M proteins.
    • Immunofixation or immunoelectrophoresis finds the exact type of abnormal M protein antibody.
    • blood calcium tests the level of calcium in your blood (a sign of bone loss)
    • Beta 2-microglobulin (ß2M) level tests how much ß2M is in your blood or urine.
    • The serum free light chain (SFLC) assay test looks for excess amounts of proteins called light chains.
    • 24-hour urine test looks for the Bence Jones protein (parts of M protein) and other abnormal immunoglobulins (signs of kidney damage).
    • Chemistry profile tests, also called metabolic panel tests, measure how well the kidneys and liver are functioning.

    Such as a skeletal survey, x-rays, MRI, CT, or a PET scan, to look for bone damage and lytic lesions (spots where bone tissue damaged) caused by multiple myeloma.

    • Looks at the cells in bone marrow.
    • It confirms if cancer cells are present, and what type.

    Biomarker tests look for changes in the DNA of cells. Types of tests include:

    • Fluorescence in situ hybridization (FISH)
    • Immunohistochemistry and Flow cytometry
    • Cytogenetics and Karyotyping
    • DNA Sequencing

    For more information about tests used to confirm, track, and follow up on treatment, see pages 15 - 16 of our Frankly Speaking About Cancer: Multiple Myeloma book.

    Staging & Types

    Myeloma is Diagnosed as from Stage 1 (least aggressive) to Stage 3 (most aggressive). It is diagnosed as:

    • Asymptomatic (smoldering) myeloma: when the M protein levels are high, and urine tests results are abnormal, but there are no “CRAB” symptoms. If this is the case, you may only need active surveillance to watch for any changes. 
    • Symptomatic (active) myeloma: when M protein levels are high and the bone marrow biopsy contains plasma cells, but one or more “CRAB” symptoms are also present. Once myeloma becomes active, it will remain active. Treatment is recommended.
    • Sometimes plasmacytoma is found in scans. This means that only one mass of abnormal myeloma cells are seen (rather than “multiple”).

    For more information about asymptomatic and symptomatic myeloma, see pg. 10 of our Frankly Speaking About Cancer: Multiple Myeloma book.

    Your M Protein Level

    It’s important to learn what your M protein level is, and track changes over time. This is the main biomarker that tells you if MM is advancing.

    If the M protein level is…

    • Less than 3 g/dL – you may have MGUS, with a 1% risk per year for MM or related conditions.
    • Greater than or equal to 3 g/dL – you may have asymptomatic myeloma, with a 10% risk per year for active myeloma.
    • Greater than or equal to 3 g/dL plus at least one “CRAB” issue (high calcium, renal problems, anemia, bone problems) – you may have active myeloma.

    Treatments and Side Effects

    A hematologic-oncologist (HEE-muh-tuh-LAH-jik on-KAH-loh-jist) is the doctor trained to treat blood cancers. Try to find one who treats many multiple myeloma patients and knows a lot about new treatments. There are many treatments available to manage multiple myeloma. New research in clinical trials is looking for a cure.

    There are a number of treatments that work to manage multiple myeloma. Until a cure is found, multiple myeloma is managed like a chronic illness. Some people can live for years without treatment. Most people will need treatment on and off throughout their life.

    Treatment Planning

    It’s important to think about the steps you can take, and talk with your doctor about what you want to do. This is called treatment planning.

    Treatment decisions are based on:

    • The results of biomarker tests and the stage of your multiple myeloma
    • Your values, goals, and preferences
    • Your age
    • Your health and symptoms (including whether you have kidney disease, heart disease, anemia, or other illnesses)
    • Your medical history and what treatments you’ve had for multiple myeloma

    Treatment for Asymptomatic (Smoldering) Multiple Myeloma

    Active Surveillance (regular testing only) can be used for many years. It is used when cancer is growing slowly and not causing symptoms. Healthy exercise and diet habits always help, and may slow progression. For more information about active surveillance and tips on how to cope, see this section of our website.

    Treatment for Symptomatic (Active) Multiple Myeloma

    The choice of treatment(s) you start with depends on the current stage of your disease. It also depends on how far it has progressed and your overall health. Most treatments for multiple myeloma use more than one drug at one time. Different combinations are used at different times in a patient’s life. Learn more about different treatment options available.

    Stem Cell Transplant: This can lead to a long cancer remission. For multiple myeloma patients, it can be done more than once (after relapse). A stem cell transplant is an infusion of blood-forming cells (stem cells), not a surgery. It allows your health care team to use higher-dose chemotherapy to kill multiple myeloma cells than would otherwise be safe. An autologous or "auto" stem cell transplant which uses your own stem cells, is most often used for multiple myeloma. See our page on stem cell transplants for more information.

    Supportive Care Drugs: Growth factors treat myeloma by helping the bone marrow produce more blood cells. They are used to increase low blood counts with growth hormones and colony stimulating factors.

    Treatment for Relapsed and Refractory Multiple Myeloma

    Treatment for Relapsed MM

    When cancer returns after treatment, more treatment is offered. Different drug combinatons may be tried. A clinical trial may also be an option.

    The treatment offered after relapse depends on:

    • Disease-related symptoms
    • The risk of another relapse
    • Your general health
    • Past treatments
    • How well past treatments worked

    Treatment for Refractory MM

    When cancer doesn’t respond to treatment, your doctor may offer another type to try. Or, a clinical trial may be an option. Supportive care and palliative care are available to help with pain and discomfort.

     

    Clinical Trials

    Be sure to ask about clinical trials. These are studies to test new treatments or learn how to use current treatments better. They may be the only way to try a promising new treatment. There are several new things being tested for multiple myeloma. Trials are often recommended for refractory disease (when other treatments don’t work). For more information, see our Clinical Trials web page and page 38 of our Frankly Speaking About Cancer: Multiple Myeloma book.

     

    Managing Symptoms & Side Effects

    Common problems from multiple myeloma include:

    • Pain- can be the cause of the myeloma itself, or from a biopsy, or treatment.
    • Anemia- when your red blood cells don’t carry enough oxygen through your body. This can make you feel tired and weak, out of breath, or dizzy.
    • Infections when your white blood counts are high, your risk for infections is high. Even a small infection can be serious. Get help immediately if you have an infection.
    • Kidney problems - The kidneys help clean the blood to remove waste (urine) and keep water balance. Some people with MM develop kidney problems from the disease and/or its treatment. Talk about strategies to protect your kidneys with your doctor. For tips on how to care for your kidneys, see page 47 of our Frankly Speaking About Cancer: Multiple Myeloma book

    Supportive care is used to manage symptoms at any stage of the disease. Eating well and doing daily exercise will also help with symptoms and side effects.

    Make sure to let your health care team know if you experience any of these symptoms.

    For tips on how to manage these symptoms and side effects, see Chapter 5 of our Frankly Speaking About Cancer: Multiple Myeloma book.

    TREATMENT AND SIDE EFFECT MANAGEMENT

     

    CAR-T cell therapy is a revolutionary treatment approach that is bringing new hope to multiple myeloma patients. Results of an early phase study were described by Reuters as “unheard of” and an industry paper called them “jaw-dropping.” On the show to help us find out all about this exciting new approach are Cherie Rineker who has been living with multiple myeloma for over five years and is participating in a clinical trial exploring this new treatment, and Dr. Jesus Berdeja, lead investigator of that study.

    For more information on CAR-T cell therapy, visit our CAR-T cell immunotherapy resource page.

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    Coping and Support

    Multiple myeloma is unique because it often has to be managed over a lifetime. There are periods of remission (when the cancer goes away) to periods of relapse (when the cancer returns). Managing the stress and anxiety of life with MM can be difficult. It’s hard to be unsure of what the future holds.

    You can regain control by taking an active role in the way you approach your life and care. If you feel depressed, it’s very important to seek help right away.

    Tips for Coping

     

    • Ask your health care team questions until you understand your diagnosis and why they recommend a certain treatment plan.
    • Know if there are signs or symptoms that you should report right away.
    • Keep a notebook to track questions, how you feel, and information you learn. Bring this with you to appointments.
    • Learn as much as you can and talk with other experts. Get a second or third opinion at any stage of your care. You are in control of your choices and can make changes along the way.
    • Control what you can. If you smoke, get help to stop. Exercise regularly, as long as it is approved by your care team. Eat healthy foods and maintain a healthy weight.
    • Know that you will be more anxious when it gets close to your doctor’s appointments. Learn relaxation techniques (like deep breathing and meditation). Be gentle with yourself.
    • Get the help you need if you feel anxious or stressed. Your medical team can refer you to a support group, one-on-one counseling, organizations that specialize in multiple myeloma, or connect you with another patient who’s ‘been there’ and may be a friend.
    • Look at the resources for support listed in Chapter 8 of our Frankly Speaking About Cancer: Multiple Myeloma book. See if any can help you.
    • Consider your priorities and ask yourself: how can I gain meaning in my life? Can I do things that give me a sense of peace or belonging? Can I spend time doing things that I enjoy and are important to me?

    See our Living with Cancer and Find Support pages for more information.

    Caregiver Support

    Multiple myeloma affects not only those with the disease, but also the people who care for them. Caregiving for a person with multiple myeloma can be stressful and frustrating. If you are caring for a person with multiple myeloma:

    Share your feelings with others. Look for caregiver support groups, either in person or online. Ask the patient’s cancer center if they have a support program for caregivers.

    Ask family, friends and members of your community if they can help. If they offer, ask for help with specific tasks. If you can afford it, consider hiring people to help with caregiving. Or have them help you with chores, childcare or errands.

    Carve out time for yourself. Spend time with people important to you, and take time for activities you enjoy. Don’t feel guilty about making time for yourself.—It is important for your own health.

    Just as a person with MM needs to pay attention to their diet, exercise and sleep, so do you. If you smoke, find a smoking cessation program. Limit alcohol.

    You may qualify to take up to 12 weeks of unpaid, job-protected leave to care for a seriously ill family member.

    You may have to deal with costs from parking, transportation and food as part of your caregiving duties. Ask the hospital if they can provide financial counseling, or even stipends, for caregivers.

    See our Caregivers page for more information and support.

    Costs and Expenses

    Treatment for multiple myeloma and follow-up care can be costly, and overwhelming. Many families say that financial worries about cancer costs are a big source of stress. It’s hard to know where to turn. Visit our Managing the Costs of Cancer Treatment page for helpful information.

    Would you like a print copy of these educational materials?

    We can mail our Frankly Speaking About Cancer pieces to you. Shipping is free for up to 20 pounds.

    FSAC: Quick Guide to Multiple Myeloma
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    Treatment for Symptomatic Multiple Myeloma
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    Treatment for Relapsed and Refractory Multiple Myeloma
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    Coping with Symptoms and Side Effects of Multiple Myeloma
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    Managing Longterm Side Effects of Multiple Myeloma - Webinar
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    Dr. Craig Cole: Precision Medicine for Myeloma
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    Patient Voices

    Aredia Taylor: We Don't Have to Suffer in Silence
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    Support Found at Cancer Support Community
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    Carol Malicki: Living Life With Cancer When You Don't Look Sick but Still Need Support
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    Carol Malicki: No One Has The Same Story
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    Carol Malicki Living With Multiple Myeloma is Not Easy
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    Aredia Talks About Why She is at the Multiple Myeloma Summit
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    Bebe: People Don't Know What Multiple Myeloma Is
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    Carol Talks About Living with Multiple Myeloma
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    Gerald Talks About Living with Multiple Myeloma
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