Myelodysplastic Syndromes

WHAT YOU SHOULD KNOW:

• Myelodysplastic syndromes (MDS) are a group of conditions where hemopoietic stem cells do not work properly. Hemopoietic stem cells produce red blood cells (RBC), white blood cells (WBC), and platelets, and are found in the bone marrow. Red blood cells carry oxygen to the cells of the body and take away wastes. 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 even die before your body uses them. MDS may be caused by problems in your immune system, or from using strong medicines such as radiation and chemotherapy to treat other diseases.
  
  
• People affected with MDS usually look pale, feel weak, get tired and have infections easily. They may throw up blood, have blood in their stools, bruise easily, and bleed more than usual. To diagnose MDS you may need a bone marrow biopsy, blood tests, and a peripheral blood smear. Treatment may include medicines to increase blood cell production, blood transfusions, and stem cell transplantation. Signs and symptoms of MDS may come and go, even after treatment. Diagnosing and treating MDS as soon as possible may relieve its symptoms, and help you live longer.

AFTER YOU LEAVE:

Take your medicine as directed.

Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.

• Antibiotics: This medicine is given to help treat or prevent an infection caused by 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 the 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.

Ask for information about where and when to go for follow-up visits:

For continuing care, treatments, or home services, ask for more information.

Avoid spreading germs:

Decrease your chance of getting lung infections and other illnesses by washing your hands often with soap and water. Carry germ-killing hand lotion or gel with you and use it to clean your hands when there is no water available. Avoid touching your eyes, nose, or mouth unless you have washed your hands first. Cover your mouth when you cough. Cough into a tissue or your shirt sleeve rather than into your hand.

Colds or the flu:

Stay away from people who have an infection such as colds or the flu. Also try to stay away from large groups of people. This decreases your chance of getting sick. The medicines and treatments you are getting can decrease your ability to fight infection. You may need to get shots to keep from getting the flu and pneumonia (noo-MOH-nyah).

Sports:

Do not play contact sports since you may bleed or bruise easily.

Wellness tips:

• Eat a variety of healthy foods: This may help you have more energy and heal faster. Healthy foods include fruit, vegetables, whole-grain breads, low-fat dairy products, beans, lean meat, and fish. Ask if you need to be on a special diet.
  
  
• Drink liquids as directed: Adults should drink between 9 and 13 eight-ounce cups of liquid every day. Ask what amount is best for you. For most people, good liquids to drink are water, juice, and milk.
  
  
• Get plenty of exercise: Talk to your caregiver about the best exercise plan for you. Exercise can decrease your blood pressure and improve your health.
  
  
• Do not smoke: If you smoke, it is never too late to quit. You are more likely to have heart disease, lung disease, cancer, and other health problems if you smoke. Quitting smoking will improve your health and the health of those around you. If you smoke, ask for information about how to stop.
  
  
• Manage stress: Stress may slow healing and cause illness. Learn new ways to relax, such as deep breathing.

For more information:

Having MDS 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 & MDS International Foundation
  100 Park Ave., Ste 108
  Rockville , MD 20850
  Phone: 1- 800 - 747-2820
  Web Address: http://www.aplastic.org
  

CONTACT A CAREGIVER IF:

• You have a fever.
  
  
• You get dizzy and feel like fainting.
  
  
• You have chills, a cough, or feel weak and achy.
  
  
• You cannot make it to your next appointment.
  
  
• You have chest pain or trouble breathing that is getting worse over time.
  
  
• You have questions or concerns about your disease or medicine.

SEEK CARE IMMEDIATELY IF:

• You have a fever.
  
  
• You have a wound that does not stop bleeding.
  
  
• You have very bad pain in your abdomen (stomach).
  
  
• You have blood in your stools.
  
  
• You throw up blood.
  
  
• You suddenly feel lightheaded and have trouble breathing.
  
  
• You have new and sudden chest pain. You may have more pain when you take deep breaths or cough. You may cough up blood.
  
  
• Your arm or leg feels warm, tender, and painful. It may look swollen and red.

Learn more about Myelodysplastic Syndromes (Discharge Care)