Myelodysplastic Syndromes

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After completing a thorough lab analysis of your recent biopsy, a specialized doctor called a pathologist reported the diagnosis of myelodysplastic syndrome, a type of cancer that most often affects adults over the age of 60. Myelodysplastic syndromes are a group of disorders that can range from mild to severe and involve blood-forming cells in the bone marrow.

About the Condition

The soft inner tissue that fills the cavities of bones is called bone marrow. In adults, certain bones such as the skull, shoulder blades, ribs, pelvis and vertebrae (backbones) contain red bone marrow, which is the site of the body’s blood stem cells. These cells develop into blood-forming cells that then produce various components of the blood such as red and white blood cells and platelets. (Blood stem cells are not the same as embryonic stem cells.)

Myelodysplastic syndromes (MDS) are cancers that occur when myeloid cells in the bone marrow do not proliferate and mature effectively, leading to low blood counts, and the cells that do get released into the blood are somewhat defective.

The cause of the disease is often not known, in which case it is classified as primary MDS. When it occurs as a response to chemotherapy or exposure to radiation, heavy metals or certain chemicals, it is called secondary MDS, which includes treatment-related MDS. Symptoms may include fatigue, shortness of breath, increased risk of infection, excessive bruising or bleeding, and anemia (reduced red blood cell count). A small percentage of MDS patients develop acute myeloid leukemia, but most do not.

MDS is classified into several types, such as refractory anemia, based on specific features of the bone marrow, blood cell counts and other factors. The stage of the disease is reflected by the International Prognostic Scoring System (IPSS), which assigns risk levels into four groups: low, intermediate-1, intermediate-2, and high. Your doctor can tell you more about your particular type of MDS and risk level.

Treatment Options

Different types of MDS vary in how well they respond to treatment; some treatment options focus primarily on relieving symptoms and improving quality of life. Deciding on a treatment plan for MDS can be complex and depends upon a variety of factors, such as the disease risk level and type, and your age, general health condition and personal preferences. The following treatment possibilities are available:

Watchful Waiting – Some low-risk or intermediate-1 MDS patients decide not to pursue active therapy but adopt a “watch and wait” tactic, avoiding the side effects of standard treatments.

Transfusion Therapy – Some MDS patients are given red blood cells or platelets via blood transfusions to improve their blood counts. This form of treatment can help relieve fatigue and shortness of breath.

Chemotherapy – The use of anti-cancer drugs, or chemotherapy, provides a way to kill cancer cells systemically (throughout the body) via the bloodstream. Often a combination of several drugs is given, which varies based on the stage of cancer.

Hypomethylating Agents (Epigenetic Therapy) – Another form of chemotherapy involves the use of hypomethylating agents, which reactivate switched-off tumor-suppressor genes that usually protect cells from becoming cancerous. Azacitidine and decitabine are two such drugs used to treat low- and high-risk MDS patients, and can help reduce the need for blood transfusions.

Growth Factors – Erythropoietin (EPO) is a hormone made in the kidneys that assists the body in producing blood cells. A small percentage of MDS patients who have low levels of EPO are given growth factors called erythropoietin-stimulating agents to promote red blood cell production and help reduce the need for blood transfusions. At times another hormone to stimulate white blood cell production may be given.

Immunotherapy – Antithymocyte globulin is an immunosuppressing drug that destroys abnormal T-lymphocytes, which are a type of white blood cell that can interfere with normal blood cell production in patients with certain MDS subtypes. Immunomodulating agents such as lenalidomide are sometimes used to stimulate the immune system and lessen the need for red blood cell transfusions for certain MDS patients who may benefit from the therapy.

(Hematopoietic) Stem Cell Transplant – Stem cell transplant involves the transfer of specific blood-forming (hematopoietic) cells after high-dose chemotherapy (and at times added radiation therapy). Cancer cells in the body along with healthy blood-forming cells in the bone marrow are destroyed by chemotherapy. Stem cells harvested from the bone marrow or blood of a matched donor are frozen and later thawed when needed for infusion into the body to help the bone marrow regenerate. When the stem cells come from a matched donor it is called an allogeneic transplant. Allogeneic stem cell transplant is the only treatment that may cure some MDS patients, but not all patients are candidates for the procedure.

You may also consider participating in clinical trials. These investigative studies help doctors learn about new treatments and better ways to use established treatments. Talk with your doctor about the possibility of taking part in a clinical trial in your area.

What You Can Do

You can choose to take an active role in your health and well-being. Learn as much as you can about your condition and have a list of questions ready each time you meet with your doctor. Join a cancer support group, and talk with your family, friends, clergyperson or counselor as you feel comfortable. Keep all of your doctor’s appointments and promptly report any new symptoms or treatment side effects that develop. Also be sure to eat a healthy diet and stay as active as you can.

Additional Resources

American Cancer Society, 800.227.2345, www.cancer.org
Myelodysplastic Syndromes Foundation, 800.637.0839, www.mds-foundation.org
The Leukemia & Lymphoma Society, 800.955.4572, www.leukemia-lymphoma.org

 This patient resource sheet is provided to you as a service of CBLPath® and is intended for information purposes only. It may not fully describe all aspects of your diagnosis and is not meant to serve as medical advice or a substitute for professional medical care. Your physician can provide you with a thorough explanation of your diagnosis and appropriate treatment options, which may vary. Only you and your physician can determine your best treatment plan.

Updated 8.12