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What is myelodysplastic syndrome?

Myelodysplastic syndrome (MDS) is a group of blood diseases that cause an abnormally low production of blood cells. MDS is more common in older adults and rare in children and may develop before the start of a more serious blood disease, acute myelogenous leukemia.

Symptoms of MDS include a decreased production of red blood cells (anemia) and bleeding caused by a decreased production of platelet cells (thrombocytopenia). Later symptoms include enlargement of the liver (hepatomegaly), enlargement of the spleen (splenomegaly) and swelling of the lymph nodes (lymphadenopathy).

Treatment of MDS depends on the severity of the disease and can include blood transfusions and chemotherapy.

Our approach

At Northwell Health Cancer Institute, our specialists are highly trained in the treatment of MDS. Because every diagnosis is unique, our physicians meet once a week to share ideas and review every step of your care. Every effort is made to administer your treatment in one convenient location.

Our specialized treatments and services for patients with MDS include:

  • Leading-edge therapies that reduce fatigue, alleviate pain and help you stay strong
  • Innovative approaches to delivering chemotherapy
  • Targeted therapies that block the growth and spread of cancer
  • Immunosuppression that boosts your bone marrow (if you have a low blood count)
  • Foundation for the Accreditation of Cellular Therapy (FACT)-accredited bone marrow/stem cell transplantation program
  • Blood transfusions

Research at Northwell

As part of your MDS treatment plan, you may have opportunities to participate in clinical trials. These trials study new chemotherapy drugs, radiation technologies and surgical approaches. While not every patient is a candidate for clinical trials, your care team will work with you to determine eligibility. Learn more about clinical trials at Northwell Health.

Symptoms

Symptoms of myelodysplastic syndromes include:

  • Weight loss
  • Fever
  • Loss of appetite
  • Tiredness
  • Shortness of breath
  • Infections and high fevers
  • Easy bruising and bleeding

Be aware that these symptoms could be due to conditions other than myelodysplastic syndromes, so it’s best to see a doctor right away.

Risk factors

While there are no know direct causes of MDS, there are risk factors that can increase your chance of developing one of these precancerous conditions. These include:

  • Past treatment with chemotherapy or radiation therapy for cancer
  • Being exposed to certain chemicals, including tobacco smoke, pesticides, fertilizers and solvents, such as benzene
  • Being exposed to heavy metals, like mercury or lead

Diagnosis

The first step to making a diagnosis of myelodysplastic syndromes is usually a physical, during which a doctor will check for general signs of health and signs of disease such as an enlarged spleen and liver and consider personal and family medical history. If myelodysplastic syndromes are suspected, the patient will receive further tests.

Specialists use a variety of procedures and tests to deliver an accurate diagnosis of myelodysplastic syndromes, as well as to determine if it is an aggressive or slow-moving type.

  • Blood tests—Blood tests can help your doctor establish what type of MDS you have. One important test is a complete blood count (CBC). This test measures the number of each blood cell type in the blood sample to determine if each type is within the normal range. Other blood tests will be done to check levels of EPO (a protein produced by the kidneys), iron, vitamin B12 and folate, as well as the presence of blast cells.
  • Bone marrow/needle aspiration and biopsy—Sample tissue is taken from bone and bone marrow by inserting a needle into the hipbone or breastbone. This is typically an outpatient procedure. The sample is used in several tests for the diagnosis of myelodysplastic syndromes.
  • Cytogenetic studies—These studies help to determine chromosome changes in bone marrow cells that indicate the presence of myelodysplastic syndromes.
  • Flow cytometry—A lab test that measures the number of cells in a sample of blood or bone marrow, the percentage of live cells and their size and shape.
  • Histochemistry studies—Physicians look at the bone marrow cells to determine whether the cells look abnormal (dysplastic).
  • Molecular genetic studies—Very sensitive DNA and RNA tests that identify specific genetic traits of the bone marrow cells.

Treatment types

There are different types of treatment for myelodysplastic syndromes. Your treatment plan will be developed for your specific needs. Treatments include:

  • Chemotherapy—Chemotherapy for myelodysplastic syndromes is used to destroy unhealthy cells before they grow and divide. Chemotherapy is typically taken orally or administered via an intravenous tube placed into a vein.
  • Stem cell transplantation—For some patients diagnosed with myelodysplastic syndromes, a stem cell transplant may be an option. The goal with this treatment is to destroy all the cancer cells in the bone marrow, blood and other parts of the body with a high dose of chemotherapy. Replacement blood stem cells are then introduced via transfusion to create new, healthy bone marrow.

We offer the largest bone marrow and stem cell transplant program on Long Island and Queens, with the most advanced, individualized options available.

Learn more

Living with myelodysplastic syndrome

  • Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine. You will get more details on the specific medicines your doctor prescribes.
  • If your doctor prescribed antibiotics, take them as directed. Do not stop taking them just because you feel better. You need to take the full course of antibiotics. If you have side effects from antibiotics, tell your doctor.
  • Take steps to control your stress and workload. Learn relaxation techniques.
    • Share your feelings. Stress and tension affect our emotions. By expressing your feelings to others, you may be able to understand and cope with them.
    • Consider joining a support group. Talking about a problem with your spouse, a good friend, or other people with similar problems is a good way to reduce tension and stress.
    • Express yourself with art. Try writing, crafts, dance, or art to relieve stress.
    • Be kind to your body and mind. Getting enough sleep, eating a healthy diet, and taking time to do things you enjoy can contribute to an overall feeling of balance in your life and help reduce stress.
    • Get help if you need it. Discuss your concerns with your doctor or counselor.
  • Do not smoke. Smoking can make blood problems worse. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.
  • If you have not already done so, prepare a list of advance directives. Advance directives are instructions to your doctor and family members about what kind of care you want if you become unable to speak or express yourself.
  • Call the American Cancer Society (1-800-227-2345) or visit its website at www.cancer.org for more information.
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