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About Myelodysplastic Syndromes (MDS)

  • Myelodysplastic Syndromes team members

  • When choosing a treatment center for myelodysplastic syndromes (MDS), you want a team of experienced and compassionate experts. The team at Dana-Farber Brigham Cancer Center has extensive experience caring for patients with MDS and leading impactful research to improve the understanding and treatment of MDS.

    Patients with MDS are cared for by expert oncologists in our Adult Leukemia Program. Our clinical and research teams are recognized leaders in MDS care and research. We collaborate closely with physicians in our Stem Cell Transplantation Program — one of the largest and most experienced stem cell transplant programs in the world — to care for MDS patients requiring stem cell/bone marrow transplant.

    Exceptional Care for MDS Patients

    • A highly specialized program focusing on MDS diagnostics, treatment, and research
    • Access to clinical trials exploring new treatments, based on promising scientific discoveries
    • Consultations and second opinions for patients and physicians nationally and internationally
    • Access to the latest diagnostics, such as molecular and genomic profiling, including the Rapid Heme Panel, available only to patients at Dana-Farber Brigham Cancer Center
    • Ability to schedule your first appointment the same day or the next day
    • Collaboration with our internationally recognized bone marrow/stem cell transplantation program
    • The full expertise of two renowned medical centers: Dana-Farber Cancer Institute and Brigham and Women's Hospital
    • Care plans tailored to the needs of each patient, from the first meeting through long-term monitoring
    • Access to support programs such as nutrition services, social work support, integrative therapies, and survivorship programs

    What Are Myelodysplastic Syndromes?

    Myelodysplastic syndromes (MDS) are a group of rare blood disorders in which the bone marrow does not make enough healthy blood cells. Typically, the bone marrow is the factory in the body that makes blood cells, the key components to a healthy immune system. The bone marrow makes:

    • Red blood cells that carry oxygen from the lungs to the cells throughout your body
    • White blood cells that fight disease and infection
    • Platelets that help blood clot and stop bleeding

    When a person has MDS, these blood cells do not mature, resulting in low numbers of healthy and functioning red blood cells, white blood cells, and/or platelets. These low blood cell counts can cause anemia and increase risk of infection, bleeding, and other complications for patients with MDS. Approximately 30% of patients with MDS will develop a more aggressive related condition called acute myeloid leukemia (AML).

    Incidence

    MDS are a group of rare blood disorders. There are an estimated 12,000 to 15,000 new cases diagnosed each year in the U.S. MDS can be diagnosed at any age, but mostly affects older adults (age 65 years or older). About 75% of MDS patients are age 60+ years. MDS can also affect children and young adults.

    Risk Factors

    Some patients with MDS have no known risk factors for developing the disease. Some recognized risk factors are:

    • Being older (65 years or more).
    • Prior chemotherapy or radiation treatment: Treatment-related MDS is very rare.
    • Long-term exposure to certain environmental or industrial chemicals, such as benzene.
    • Clonal hematopoiesis of indeterminate potential (CHIP) and clonal cytopenia of undetermined significance (CCUS) are benign precursor conditions for MDS. Specialists in our Center for Prevention of Progression help patients with CHIP and CCUS to monitor and manage their risk of progression to MDS. Patients may have the opportunity to participate in clinical trials and research evaluating prevention strategies.
    • Bone marrow failure syndromes increase the risk of developing MDS. Specialists in our adult bone marrow failure syndromes clinic work closely with our pediatric colleagues in the Dana-Farber/Boston Children's Cancer and Blood Disorder Center. Patients may have the opportunity to participate in clinical research studies and clinical trials to better understand the relationship between bone marrow failure and MDS.
    • Germline, or inherited, mutations are also recognized as a risk factor for developing MDS, particularly germline mutations in DDX41 and GATA2.

    Signs and Symptoms of Myelodysplastic Syndromes

    Some patients may not experience symptoms, and MDS may be detected through a routine blood test that shows low counts for red blood cells, white blood cells, and/or platelets. Sometimes, these low blood counts cause patients to experience:

    • Fatigue
    • Heart palpitations: feeling of having a fast-beating, fluttering, or pounding heart
    • Shortness of breath
    • Pale appearance
    • Frequent infections (skin, sinus, lung, or urinary tract infections are common)
    • Easy bruising or bleeding

    These symptoms can have many causes, and may not be due to cancer. However, it is important that you discuss persistent symptoms with your primary care doctor.

    Growth and Spread

    For many patients, MDS is not an aggressive disease, and can be managed with treatment. In about 30% of patients, MDS develops into the more aggressive acute myeloid leukemia, which requires fast attention and treatment.

    Factors Affecting Prognosis

    The number of immature white blood cells, called blasts, is used to determine a patient's MDS risk level:

    • In normal, healthy bone marrow, no more than 5% of white blood cells are blasts.
    • A patient has lower-risk MDS if fewer than 5% of their white cells are blasts.
    • A patient has higher-risk MDS if 5-19% of their white cells are blasts.

    These factors influence whether MDS can be managed, or is more aggressive and likely to progress to AML:

    • A patient's blood counts, including the number of blasts.
    • The molecular profile of the disease. The molecular profile includes specific changes in the chromosomes and DNA of the MDS cells.

    Your Dana-Farber physician will develop an individualized risk assessment, which considers traditional risk assessment factors, as well as your specific mutational profile. If necessary, we will conduct next-generation sequencing using our Rapid Heme Panel to identify your specific mutational profile.