FAQ

Also known as plasma cell myeloma, multiple myeloma is cancer that affects bone marrow plasma cells. These cells are responsible for making antibodies that help the body fight against bacteria and viruses. A malignant or cancerous plasma cell is called a myeloma cell. Myeloma is described as “multiple” because it frequently grows in several areas of the bone marrow.

While multiple myeloma is currently incurable, it is treatable. With advances in therapies, many patients can achieve remission and manage their disease for extended periods. Early diagnosis and treatment by a myeloma specialist are recommended for the best outcomes.

Multiple myeloma affects areas where the bone marrow is active in adults. These include the bones of the spine, skull, pelvis, rib cage, and areas around the shoulders and hips. This condition impacts the body by:

• Causing bone breakdown.
• Preventing new bone cell production.
• Increasing the risk of fractures.
• Releasing calcium into the blood (hypercalcemia).
• Disrupting the production of new blood cells, leading to anemia, neutropenia, or thrombocytopenia.
• Suppressing the immune response.
• Reducing the number of normal antibodies.

Kidney disease is also identified as a serious complication of multiple myeloma, affecting 20% to 25% of newly diagnosed patients. Up to 50% of patients with active myeloma are also at risk of developing kidney disease.

In 70% of patients, the most common symptoms of multiple myeloma are: 

• Back or bone pain
• Fatigue
• Recurrent or persistent infections

Other possible symptoms include:

• Consistent or worsening tiredness.
• Recurrent unexplained infections (such as pneumonia, sinus infection, or urinary tract infection).
• Swollen arms, legs, hands, or feet.
• Shortness of breath.

If you are experiencing any of these symptoms, it is important to consult your physician. 

The exact cause of multiple myeloma is unknown, but several potential risk factors have been identified, including:

• Radiation exposure.
• Immune system problems or infections.
• HIV, hepatitis, and herpes viruses that may act as triggers.
• Family history.

Although it's not proven, some theories suggest that exposure to toxic chemicals (benzene, dioxins, agricultural chemicals, solvents, fuels, and engine exhaust) may be linked to the development of myeloma.

Research is ongoing to better understand the genetic and environmental factors that may contribute to the development of myeloma. Some studies are investigating whether dietary and lifestyle factors play a role, especially in the progression from precursor conditions to active myeloma.

A multiple myeloma prognosis is determined by both the number and specific properties of myeloma cells in a patient, which include: 

• Growth rate of myeloma cells.
• Production rate of monoclonal antibody proteins.
• Production or non-production of various cytokines and chemicals that damage or significantly impair other tissues, organs, or bodily functions.

Multiple myeloma has different types and subtypes based on the immunoglobulin (protein) produced by the myeloma cell:

• Heavy protein chains: G, A, D, E, and M
• Light protein chains: Kappa (κ) and lambda (λ)

Find out more about the types of myeloma.

There are three stages of multiple myeloma:

1. Monoclonal gammopathy of undetermined significance (MGUS): The earliest precursor and disease state associated with the subsequent development of myeloma, with a low level of abnormal plasma cells and monoclonal protein (or M protein) found in the blood. There are several types of MGUS — multiple myeloma may develop from plasma cell type MGUS (comprising 85% of all MGUS cases). MGUS occurs in 3%-5% of the U.S. population, with higher rates among those aged 50 and older. Progression from MGUS to active myeloma occurs at a low rate of 1% per year. MGUS is a benign condition, and patients do not need to undergo treatment unless they choose to take part in a clinical trial. However, a hematologist should monitor patients with MGUS.
2. Smoldering multiple myeloma (SMM): An asymptomatic precursor state of active myeloma, similar to MGUS but at an intermediate level. SMM patients have higher levels of monoclonal protein and abnormal plasma cells than MGUS, but no indications of end-organ damage based on the CRAB criteria. The average risk progression from SMM to active myeloma is 10% per year. SMM patients should be observed by a hematologist-oncologist at regular intervals.
3. Active multiple myeloma: Also known as symptomatic myeloma, active multiple myeloma is diagnosed when specific tests indicate the presence of end-organ damage (based on the CRAB criteria), which may include hypercalcemia, anemia, bone lesions, and/or kidney damage. A patient experiencing 10% or more clonal plasma cells in the bone marrow and at least one myeloma-defining event (MDE) is diagnosed with active myeloma.

The progression from MGUS to SMM to active myeloma involves increasing levels of abnormal plasma cells and monoclonal protein production. Careful monitoring and timely intervention are crucial to manage the disease course.

The earlier staging system for multiple myeloma was the Durie-Salmon Staging System. It shows the correlation between the amount of myeloma and the damage it has caused, such as bone disease or anemia.

Today, multiple myeloma is staged using the following:

• International Staging System: Developed by the International Myeloma Working Group (IMWG), the International Staging System is based on prognostic factors and predictors of survival, which include Serum β2 microglobulin (Sβ2M), serum albumin, platelet count, serum creatinine, and age.
• Revised International Staging System for Multiple Myeloma: Published by the IMWG in August 2015, the R-ISS expanded upon the ISS by incorporating two additional prognostic markers assessed from bone marrow samples taken at the time of diagnosis:
  • Lactate dehydrogenase (LDH): An enzyme whose elevated levels can reflect more aggressive disease activity
  • Chromosomal abnormalities (cytogenetic abnormalities): Detected by fluorescence in situ hybridization (FISH), a technique that uses fluorescent chemical probes to bind to specific DNA sequences on chromosomes, revealing structural differences. The high-risk chromosomal abnormalities assessed are del(17p), t(4;14), and t(14;16).

Certain factors may increase a person's risk of developing multiple myeloma, including:

• Age: Multiple myeloma is most commonly diagnosed in older adults between the ages of 65-74. 
• Gender: Men are 1.5 times more likely to develop multiple myeloma than women. 
• Race: African Americans have a higher risk of developing multiple myeloma compared to other racial or ethnic groups.
• Family history: Having a first-degree relative (parent, sibling, or child) with multiple myeloma or a related plasma cell disorder may increase one's risk. 
• MGUS: MGUS is a condition characterized by the presence of an abnormal protein in the blood but without the symptoms or complications of multiple myeloma. Over time, those with MGUS have a higher risk of progressing to multiple myeloma. 
• Individuals with plasma cell diseases: Plasma cell diseases, such as solitary plasmacytomas, increase the risk of developing multiple myeloma.
• Exposure to radiation or toxic chemicals: While not proven, some studies suggest that prolonged exposure to radiation or toxic chemicals, such as benzene, dioxin, pesticides, solvents, fuels, and engine exhaust, may increase the risk of developing multiple myeloma.
• Obesity: Some evidence suggests that obesity may be associated with an increased risk of multiple myeloma. 

It is important to note that while these factors may increase the risk of developing multiple myeloma, not everyone will develop the disease. Additionally, individuals without these risk factors may still be diagnosed with multiple myeloma.  

The exact cause of multiple myeloma is not fully understood. Additional research is ongoing to better understand the underlying factors.   

Multiple myeloma is the second most common blood cancer in the world. According to the National Cancer Institute (NCI) SEER data, an estimated 36,110 new multiple myeloma cases are projected to be diagnosed in the United States in 2025, with myeloma representing 1.8% of all new U.S. cancer cases.

Multiple myeloma is typically diagnosed using a combination of the following methods:

Medical History and Physical Examination

Symptoms, medical history, and family history of cancer will be assessed, and a physical examination may be performed to check for signs of multiple myeloma or related complications. 

Tests to Assess Blood Cells

Complete blood count (CBC) is used to identify the presence of MGUS, SMM, or multiple myeloma. A CBC also measures red blood cells, hemoglobin, hematocrit, white blood cells, neutrophils, and platelets.

Additionally, mass spectrometry is conducted to detect and measure the amount of M-protein in the blood. Mass spectrometry is helpful in diagnosing and monitoring MGUS, SMM, and active myeloma. However, mass spectrometry has not yet been approved by the FDA and is currently only being conducted at a few reference laboratories.

Tests to Assess Kidney Function

The International Myeloma Working Group (IMWG) and National Comprehensive Cancer Network (NCCN) recommend kidney function tests for diagnosis and management of multiple myeloma, which include: 

• Serum creatinine.
• Estimated glomerular filtration rate.
• Electrolyte measurements.
• Free light chain assessment.
• Urine electrophoresis of a sample from a 24-hour urine collection.

Tests to Assess Monoclonal Protein

This important group of blood and urine tests assesses the amount and activity of myeloma. These tests measure the monoclonal protein that myeloma cells secrete into the blood and/or urine. 

These blood and urine tests include Serum Quantitative Immunoglobulins (QIg), Serum Protein Electrophoresis, Urine Protein Electrophoresis, and serum Free Light Chain.

Bone Marrow Testing

Bone marrow tests (aspirate and biopsy) are performed routinely to diagnose multiple myeloma and are also used for monitoring during treatment:

• Bone marrow aspiration uses a needle to collect a sample of fluid and cells from the bone marrow for examination under a microscope. 
• Bone marrow biopsy uses a hollow-bore needle to collect a sample of bone tissue. If cancerous plasma cells are found, the pathologist estimates how much of the bone marrow is affected.

Imaging Tests

Because bone disease is a common symptom of multiple myeloma (with 70%-80% of patients found to have bone disease at diagnosis), imaging tests are crucial in assessing the status of a patient's bones and/or bone marrow at diagnosis and relapse. These tests include:

• X-rays 
• CT or CAT (computerized axial tomography) scans 
• MRI (magnetic resonance imaging) scans 
• PET (positron emission tomography) scans 
• PET/CT scans 
• Bone density testing 

Early diagnosis is important to guide appropriate treatment planning. The IMWG criteria for diagnosing myeloma are based on these test results.

The IMF has a database of essential information to help you understand your condition. If you are newly diagnosed with myeloma, we recommend these resources to help you navigate these significant life changes:

• The IMF's Patient Handbook for the Newly Diagnosed
• The IMF's Understanding Stem Cell Transplant in Myeloma
• Resource library for IMF publications and videos
• Care partner resources for designated care providers

The key is to be an engaged, informed patient while maintaining a hopeful outlook. The IMF is here to provide free educational resources every step of the way. 

Multiple myeloma can affect bones, red blood cells, and kidneys, as well as a patient's immune response, which may lead to chronic, sometimes even severe, infections. 

Urgent medical problems may also arise at diagnosis, which require medical attention before systemic therapy for myeloma begins:

• Vertebral compression fractures 
• Myeloma tumors (plasmacytomas) that can press on the spinal nerves 
• Nerve damage in the spinal cord 
• Infections 
• Hypercalcemia from bone breakdown 
• Kidney failure due to high levels of calcium and monoclonal protein in the blood 

Other possible medical problems include: 

• Anemia due to myeloma cells interfering with red blood cell production.
• Peripheral neuropathy (numbness, tingling, or pain in hands and feet).
• Blood clots or venous thromboembolism.

Myeloma and its treatments can impact various organs and systems in the body. Learn more about possible myeloma-related complications within and outside the bone marrow.

While multiple myeloma has traditionally been considered incurable, advances in treatment and research are changing that outlook. Today, many patients achieve deep, long-lasting remissions and live longer, healthier lives than ever before. Researchers are actively exploring whether some patients who remain in complete remission, are minimal residual disease (MRD)-negative, and show no signs of active disease for many years could be considered cured. The question of sustained remissions equaling a cure is still being studied. Although a cure is not yet the standard outcome, ongoing innovations in immunotherapy, MRD testing, and cure-focused research are bringing the myeloma community closer to that goal.

Multiple myeloma life expectancy varies from person to person based on factors such as age, overall health, disease stage, and individual risk factors. Recent studies show that the average survival for people with myeloma now exceeds 10 years, thanks to significant advances in treatment. While statistics cannot predict an individual's outcome, many patients today are living longer and maintaining a good quality of life with modern therapies, ongoing monitoring, and personalized care.

The “Hazardous Five” refers to five key additives that are considered “the worst of the worst.” In the blog, “You Are What You Don't Eat,” multiple myeloma patients are advised to avoid foods that contain these additives at all costs:

• Red dye #3
• Titanium dioxide
• Brominated vegetable oil
• Potassium bromate
• Propyl paraben

Your attending myeloma clinician may recommend a consultation with a physical or occupational therapist to assess your physical activity level and assistance needs. Common questions to discuss with your healthcare providers when considering your physical activity level include:  

• How do you move in and out of bed?  
• How long can you tolerate exercise? For example, can you comfortably ride a stationary bike for 10 minutes?  
• Are you experiencing any pain in certain parts of your body? 

For healthcare providers, an exercise prescription should consist of the four components of the FITT Principle:  

• Frequency: The number of sessions per week
• Intensity: How hard the person is exercising
• Time: The duration of the exercise session
• Type: The activity mode 

Before starting any exercise program, healthcare providers should assess a patient's overall fitness and safety level. Patients should also be educated about when to modify or abstain from their exercise regimens. As always, discuss your planned physical activities with your healthcare provider.

The IMF is dedicated to finding a cure for myeloma and preventing its onset through various research initiatives: 

• The International Myeloma Working Group (IMWG) comprises nearly 300 leading myeloma experts who conduct collaborative research to improve patient outcomes and provide treatment guidelines followed worldwide.
• The Black Swan Research Initiative (BSRI) is the IMF's signature project bridging the gap from long-term remission to an actual cure. The BSRI aims to develop the first definitive cure for myeloma. 
• The annual Brian D. Novis Research Grant Program supports promising research projects by junior and senior investigators working toward better treatments and a cure. 
• The Nurse Leadership Board develops recommendations for optimal nursing care of myeloma patients as part of the cure effort.

Through these robust research programs, the IMF is making significant strides and bringing hope for improved outcomes, prevention strategies, and ultimately a cure for this disease. 

Additionally, the IMF promotes health equity worldwide through the Global Myeloma Action Network and the M-Power Initiative, which aim to reduce healthcare disparities that can contribute to myeloma development in underrepresented communities. 

The IMF can help you in many ways after a myeloma diagnosis: 

• Provide free educational resources like the IMF Patient Handbook for the Newly Diagnosed to help you understand this complex disease, treatment options, and supportive care measures.
• Connect you with the IMF InfoLine staffed by trained specialists who can answer your myeloma-related questions and concerns in a caring and compassionate manner. 
• Offer opportunities to attend IMF Patient & Family Seminars or Regional Community Workshops where you can learn from myeloma experts and connect with other patients.  
• Help you find a local IMF-facilitated Support Group to share experiences and receive emotional support from others on a similar journey. 
• Empower you to make informed decisions about your care by staying up to date through IMF publications, webinars, and the latest myeloma research. 

The IMF InfoLine is staffed by trained specialists who can provide information about myeloma treatment centers and specialists in your area. While they cannot directly refer you to a specific doctor, they can guide you on factors to consider when choosing a myeloma specialist and treatment facility.  

The InfoLine team aims to empower you with knowledge to have informed discussions with your healthcare providers. You may call 1-800-452-CURE (2873) in the U.S./Canada, or worldwide at 1-818-487-7455. You may also email your inquiries to [email protected].

The IMF utilizes corporate and foundation support to advance its mission of improving the quality of life for myeloma patients while working toward prevention and a cure. Corporate gifts and foundation grants provide critical seed funding to accelerate the path to a cure. This funding can expedite the discovery of innovative treatments and expand IMF programming to support those affected by this incurable disease. 

The IMF guides corporate giving strategies to align with companies' goals, target audiences, and marketing objectives. By partnering with the IMF, corporations make a wise investment in the future while providing value for their organization. Corporate and foundation funding allows the IMF to continue its vital research initiatives, educational resources, support services, and advocacy efforts for the myeloma community worldwide. 

Know more about what the IMF does in the latest IMF Annual Report.

Unfortunately, the IMF is not able to provide direct monetary assistance to patients, but we do have information about financial resources that may be available to you.

You can view a list of co-pay assistance programs or contact the IMF InfoLine at 1-800-452-CURE (2873) in the U.S./Canada, or globally at 1-818-487-7455. Phone lines are open Monday through Friday, 9 a.m. to 4 p.m. (PST). You may also email your inquiries to [email protected].