FAQs - Multiple Myeloma Research Foundation


Frequently Asked Questions

  • What is Multiple Myeloma?

    Multiple myeloma is a type of blood cancer that affects the plasma cells. In multiple myeloma, malignant plasma cells accumulate in the bone marrow, crowding out the normal plasma cells that help fight infections. These malignant plasma cells then produce abnormal proteins (m protein) which may cause tumors, damage the kidneys, and impair immune system function.

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  • How common is Myeloma?

    More than 77,000 people are living with multiple myeloma today, and the American Cancer Society estimates that multiple myeloma will be diagnosed in 24,050 people in 2014.

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  • What causes Myeloma?

    To date, no cause for myeloma has been identified.

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  • How does Myeloma affect the body?

    Multiple Myeloma primarily affects the bones, the blood, and Kidneys.

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  • What are the symptoms of Myeloma?

    Some of the more common multiple myeloma symptoms are:

    • Bone pain
    • Fatigue
    • Weakness
    • Infection
    • Loss of appetite and weight loss

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  • What tests are done to diagnose Myeloma?

    Blood and urine tests as well as a bone marrow biopsy are part of the initial evaluation to help confirm a diagnosis of myeloma. Other tests include X-rays, MRIs, CT scans and PET scans.

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  • What is the importance of Genomics?

    Researchers are continually working to better understand the biology of multiple myeloma, and through genomic (study of the tumor cell DNA) studies we have learned that there are many DNA alterations in myeloma cells. The ultimate goal of genomic research is to eventually develop personalized treatments based on the DNA in the myeloma cells of individual patients.

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  • How is Myeloma classified?

    Myeloma is classified according to the results of diagnostic testing, and these results indicate whether or not immediate treatment is needed. In addition, a stage is assigned to denote the extent of disease.

    Myeloma is classified into three categories:

    • Monoclonal gammopathy of undetermined significance (MGUS): Precursor to myeloma.
    • Smoldering myeloma: asymptomatic disease.
    • Active myeloma: symptomatic disease.

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  • How is Myeloma staged?

    The process of staging myeloma is crucial to developing an effective treatment plan. The most commonly used staging system is the International Staging System (ISS), which is based on two blood test results: beta2-microglobulin (ß2-M) and albumin. An older staging system that is sometimes used is called the Durie-Salmon Staging System.

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  • How is prognosis determined?

    In arriving at prognosis for myeloma, several clinical and laboratory findings provide important information. These prognostic indicators help determine how fast the tumor is growing, the extent of disease, the biologic make-up of the tumor, the response to therapy, and the overall health status of the individual.

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  • What therapies are used in Myeloma?

    There are two categories of myeloma therapies:

    • Therapies to control the myeloma or kill myeloma cells
    • Therapies that alleviate symptoms and manage complications of the disease and its treatment (known as supportive therapy)

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  • What factors are considered in development of a treatment plan?

    There is no one standard treatment. A patient’s individual treatment plan is based on a number of things, including:

    • Age and general health
    • Results of laboratory and cytogenetic (genomic) tests
    • Symptoms and disease complications
    • Prior myeloma treatment
    • Patient’s lifestyle, goals, views on quality of life, and personal preferences
    • Depending on the characteristics of a patient’s disease and his or her wishes, treatment plans may be designed to meet one or more goals

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  • How do you know if a treatment is working?

    During and after treatment, your doctor will monitor your levels of M protein and your symptoms. Your doctor may also perform some of the same laboratory tests and medical procedures that were done when you were diagnosed with myeloma, such as blood tests, X-rays, or bone marrow biopsy. All these results show how well the treatment is working and may also help to detect any side effects. These tests also help determine if, after an initial response to treatment, your myeloma relapses.

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  • What is Minimal Residual Disease (MRD)?

    Minimal residual disease (MRD) is the presence of small amounts of tumor cells following the achievement of complete response. Currently, urine and blood tests are the standard tests used to determine the response to multiple myeloma therapy. However, even patients who achieve a complete response may relapse, suggesting that some myeloma cells may still be present.

    Studies using newer more sensitive tests to detect MRD are showing that patients who achieve deeper responses with fewer remaining tumor cells may have better outcomes. With today’s therapies, more and more patients are achieving deep responses. Thus, interest in the assessment of MRD is growing.

    Monitoring of MRD is relatively new and is just beginning to be adopted in cancer centers. Tests include:

    • Flow cytometry: measures the number and characteristics of cells taken from a bone marrow sample. It is the most common test used in the US.
    • Molecular tests (e.g., polymerase chain reaction or PCR, Sequenta ClonoSIGHT™): newer technology that evaluates the DNA of cells and can detect very low numbers of cells.

    Clinical trials are ongoing incorporating MRD and are evaluating the various methods to detect it. In particular, the MMRF is collaborating with researchers to compare flow cytometry to the Sequenta ClonoSIGHT™ molecular test.

  • What are the options for initial therapy?

    The selection of initial treatment of symptomatic myeloma in newly diagnosed patients depends on many factors, including the features of the myeloma itself, anticipated risk of side effects, convenience, and the familiarity of the treating physician with the given regimen. Options are similar regardless of whether patients are candidates for, or are interested in, undergoing transplantation.

    Patients who are candidates for transplant may choose to have a transplant after three to four cycles of initial therapy (also known as induction therapy) or may decide to continue their initial therapy and potentially consider transplant later in the disease course.

    The length of therapy varies for patients who are not candidates for transplant or who choose not to undergo transplant. While some doctors recommend continuous treatment until there is evidence of myeloma progression, others recommend treatment for a fixed period of time, generally until the response of the disease to the treatment reaches a plateau. The specific characteristics of your myeloma, your preferences, and your doctor’s perspective are considerations in determining the length of therapy. Studies are ongoing to determine the best approach.

    Myeloma treatments consist of either triplets (three drugs) or doublets (two drugs). Clinical trials are an option that patients may want to discuss with their doctors.

    Triplets include:

    • Revlimid-Velcade-dex (RVD): most commonly used
    • Velcade-cyclophosphamide-dex (VCD or CyBorD)
    • Velcade-Thalomid-dex (VTD)

    Doublets include:

    • Revlimid-dex (Rd)
    • Velcade-dex (Vd)

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  • What is high-dose chemotherapy and stem cell transplantation?

    High-dose chemotherapy and stem cell transplantation is a treatment that, for many patients, offers a chance for durable remission of myeloma. High-dose chemotherapy, though effective in killing myeloma cells, also destroys normal blood-forming cells, called stem cells, in the bone marrow. Stem cell transplantation replaces these important cells.

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  • Should I receive maintenance therapy?

    Since myeloma is not yet curable, it may recur even in patients who obtain a complete response. The goal of maintenance therapy is to maintain the response for as long as possible and hopefully improve survival. There is increasing evidence supporting the role of maintenance therapy after the completion of initial therapy or after transplantation.

    Studies are showing that maintenance therapy may improve survival and help keep myeloma in remission after transplantation. They also suggest that maintenance therapy provides benefit for patients who have not received a transplant.

  • What are the options for relapsed or refractory Meyloma?

    If myeloma does not respond to initial therapy or if relapse occurs soon after the completion of initial therapy, the myeloma is considered to be refractory, or resistant to the treatment. Therefore, the disease is not likely to respond to the same treatment by itself. An additional drug may be added to the treatment regimen, or a different combination of drugs may be used as second-line therapy. If relapse occurs after a period of response to initial therapy, the initial therapy may be repeated, or another regimen may be given.

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  • How are symptoms and side effects managed?

    Myeloma often weakens bones, affects blood counts resulting in anemia and infection, and causes reduced kidney function. Medications used to treat myeloma also have side effects. For example, some medications have the potential to lower blood counts and cause peripheral neuropathy or blood clots.

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  • Should I participate in a clinical trial?

    Clinical trials are critically important in order to develop new myeloma treatments and better understand the biology of the disease. The more people who enroll in clinical trials, the faster we can develop new drugs and obtain the answers to important questions about myeloma.

    Patients who enroll in clinical trials have the opportunity to be amongst the first to receive the newest drugs or drug combinations in development and receive close monitoring.

    Placebos are not given. All clinical trial participants receive the experimental therapy being tested for multiple myeloma or the best available standard treatment. It is important to understand that new treatments may be equivalent to, more effective than, or not as effective as standard treatment options. They may also have unexpected side effects.

    Clinical trials take place at cancer centers, hospitals, clinics, or doctors’ offices. Before you enroll, all details of the treatment will be explained and you must consent to participate. Remember, you can withdraw from a clinical trial at any time.

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  • What are some of the most promising agents in clinical trials?

    There are a variety of new agents in various stages of development for myeloma. Agents in development may act in different ways against myeloma than currently available drugs, may have fewer side effects, or may have more convenient dosing. However, the availability of some of these drugs may be limited to individuals at particular stages of disease, and the drugs are not without side effects of their own. Numerous other agents are in Phase II studies.

  • What does the future look like for Myeloma treatments?

    Many new drugs are in development, and researchers continue to study the best combination of available drugs, the best approaches to treatment, and the biology of the disease. As research in myeloma evolves, new treatments have the potential to substantially improve survival and patients’ quality of life.

    The MMRF is working to advance our knowledge of disease and is sponsoring a groundbreaking study—The CoMMpass℠ Study. This study is focused on learning more about the biology of myeloma throughout the course of the disease, particularly focusing on the genetics of myeloma. There will be 1,000 newly diagnosed patients who will be followed for 10 years.

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  • How can I connect with other patients?

    There are many ways to connect with other people with multiple myeloma.