Myelodysplastic Syndromes

GENERAL INFORMATION:

What are myelodysplastic syndromes?

• Myelodysplastic syndromes (MDS) are a group of conditions where hemopoietic stem cells do not work properly. Hemopoietic stem cells are found in the bone marrow, and produce red blood cells (RBC), white blood cells (WBC), and platelets. The bone marrow is a soft, spongy material found in the bones. Red blood cells carry oxygen to the cells of the body and take away wastes, such as carbon dioxide. Platelets help stop bleeding when you are cut or hurt, and white blood cells help fight infection in the body.
  
  
• In MDS, defective (faulty) stem cells grow and increase in number without control or order. The red and white blood cells, and platelets produced are faulty and too few in number. These cells get destroyed easily, and may die even before your body uses them. This makes you at risk of having anemia (low levels of RBC), bleeding, infections, and leukemia (cancer of blood cells).

What causes myelodysplastic syndromes? Defective stem cells in MDS may appear after treatment with strong medicines used to treat other diseases. These medicines include radiation and chemotherapy. MDS may also be caused by problems in your immune system, such as an autoimmune disease. The immune system is your body's defense system against infections and diseases. An autoimmune disease happens when immune cells produce antibodies that attack your body's own cells. When your family members or close relatives have MDS, there is a higher risk that you may have it also.

What are the signs and symptoms of myelodysplastic syndromes? MDS usually affects the elderly. The signs and symptoms may include pale skin, weight loss, weakness, and fatigue (getting tired easily). You may have low blood pressure and feel dizzy when you stand up too quickly. You may have fevers or get infections very easily. You may also throw up blood, have blood in your stools, bruise easily, and bleed more than usual.

How are myelodysplastic syndromes diagnosed? Your caregiver may need a complete medical history from you. He may also need to know the health condition of your family. A complete physical exam may be done. Your caregiver may have to rule out other conditions similar to MDS. You may have any of the following tests:

• Bone marrow biopsy: This is when a sample of bone marrow is removed and sent to a lab for tests. Bone marrow is the soft, spongy tissue inside the bone. The skin over your upper hipbone is first cleaned. Caregivers put numbing medicine into your skin so you will have little pain. A bandage is put on the biopsy area after the tissue sample is taken.
  
  
• Blood tests: You may need blood taken for tests. The blood can be taken from a blood vessel in your hand, arm, or the bend in your elbow. It is tested to see how your body is doing. It can give your caregivers more information about your health condition. You may need to have blood drawn more than once.
  
  
• Peripheral blood smear: A drop of your blood is put on a flat piece of glass and seen through a microscope. With this test blood cells can be checked for problems.

How are myelodysplastic syndromes treated? The aim of treatment is to produce enough normal RBC, WBC, and platelets, and prevent anemia, bleeding, and infections. You may be given any of the following:

• Blood transfusion: During a blood transfusion, you will get whole blood, or parts of blood through an IV. Many people are worried about getting AIDS, hepatitis, or West Nile Virus from a blood transfusion. The risk of this happening is rare. Blood banks test all donated blood for AIDS, hepatitis, and West Nile Virus. If you refuse a blood transfusion, your condition may get worse, and you may die.
  
  
• Medicines:
  
  
  • Antibiotics: Antibiotics may be given to help treat or prevent an infection caused by germs called bacteria.
    
    
  • Chemotherapy: This medicine, often called chemo, is used to kill faulty hemopoietic stem cells. Chemo may also be used to prevent normal stem cells from becoming defective cells. Many different chemo medicines may be used, and you may need frequent blood tests. Chemo can have many side effects. Caregivers will watch you closely and will work with you to decrease side effects. Even if the chemotherapy does not cure you completely, it may help you feel better or live longer.
    
    
  • Immunosuppressives: These medicines help stop your immune system from attacking your body's own cells. They may also prevent death of normal RBC, WBC, and platelets.
    
    
  • Others: Medicines to increase cell production, such as erythropoietin and steroids, may help increase the amounts of RBC, WBC, and platelets in your body. They may also stop the growth of faulty stem cells.
  
  
• Hemopoietic stem cell transplantation: During a hemopoietic stem cell transplant, blood cells called stem cells are put into your body. Blood may be taken from a carefully chosen person (donor). The blood is then put through a process called apheresis. During apheresis, the stem cells are taken out of the blood. The stem cells are then put back into your body and they usually return to the bone marrow. In the bone marrow, stem cells may then grow and become RBC, WBC, or platelets.

Where can I get more information? Having a myelodysplastic syndrome may be hard for you. You and your family may feel sad, angry, or afraid. Talk to your caregiver or friends about your feelings. Contact the following for more information:

• The Leukemia & Lymphoma Society Inc.
  1311 Mamaroneck Avenue
  White Plains, NY 10605
  Phone: 1-914-949-5213
  Phone: 1-800-955-4572
  Web Address: http://www.leukemia-lymphoma.org
  

• Aplastic Anemia and MDS International Foundation, Inc.
  P.O. Box 613
  Annapolis, MD 21404-0613
  Phone: 1-800-747-2820
  Web Address: http://www.aplastic.org
  

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

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