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:

Medicines:

• Keep a written list of the medicines you take, the amounts, and when and why you take them. Bring the list of your medicines or the pill bottles when you see your caregivers. Learn why you take each medicine. Ask your caregiver for information about your medicine. Do not use any medicines, over-the-counter drugs, vitamins, herbs, or food supplements without first talking to caregivers.
  
  
• Always take your medicine as directed by caregivers. Call your caregiver if you think your medicines are not helping or if you feel you are having side effects. Do not quit taking your medicines until you discuss it with your caregiver. If you are taking medicine that makes you drowsy, do not drive or use heavy equipment.

• 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 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 your caregiver when to return for a follow-up visit. Keep all appointments. Write down any questions you may have. This way you will remember to ask these questions during your next visit.

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 hints:

• Eating and drinking:
  
  
  • Eat a variety of healthy foods such as fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meat and fish. Eating healthy foods may help you have more energy and heal faster. Ask your caregiver if you need to be on a special diet.
    
    
  • Men 19 years old and older should drink about 3.0 Liters of liquid each day (close to 13 eight-ounce cups). Women 19 years old and older should drink about 2.2 Liters of liquid each day (close to 9 eight-ounce cups). Follow your caregiver's advice if you must change the amount of liquid you drink. For most people, good liquids to drink are water, juices, and milk. If you are used to drinking liquids that contain caffeine, such as coffee, these can also be counted in your daily liquid amount. Try to drink enough liquid each day, and not just when you feel thirsty.
  
  
• Start exercising: Talk to your caregiver before you start exercising. Together you can plan the best exercise program for you. It is best to start slowly and do more as you get stronger. Exercising can help make your heart stronger, lower your blood pressure, and keep you healthy.
  
  
• Quit smoking: It is never too late to quit smoking. Smoking harms the heart, lungs, and the blood. You are more likely to have a heart attack, lung disease, and cancer if you smoke. You will help yourself and those around you by not smoking. Ask your caregiver for more information about how to stop smoking if you are having trouble quitting.
  
  
• Avoid stress: Stress may slow healing and cause illness. Since it is hard to avoid stress, learn to control it. Learn new ways to relax, such as deep breathing. Talk to your caregiver about things that upset you.

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

CONTACT A CAREGIVER IF:

• You have a fever (increased body temperature).
  
  
• 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 questions or concerns about your disease or medicine.

SEEK CARE IMMEDIATELY IF:

• You have a fever (increased body temperature).
  
  
• You have a wound that does not stop bleeding.
  
  
• You have chest pain.
  
  
• You have trouble breathing all of a sudden.
  
  
• You have very bad pain in your abdomen (stomach).
  
  
• You have blood in your stools.
  
  
• You throw up blood.

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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