Consumer Information

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.

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.

RISKS:

Treating MDS carries risks. Medicines may cause nausea (upset stomach), vomiting (throwing up), and dizziness. Medicines may kill some normal RBC, WBC, and platelets along with the faulty stem cells. During a stem cell transplant you may bleed more than usual or have an infection. It may take some time for your condition to improve. Your signs and symptoms may also come and go, even after treatment.
If left untreated, your red and white blood cells, and platelets may continue to decrease. You may feel very weak, dizzy, and have trouble breathing. You may get infections very easily and have high fevers. You may throw up a lot of blood, have blood in your stools, or bleed inside your body. There is also a risk that you may get leukemia (cancer of blood cells). These conditions may cause death if they are not found and treated as soon as possible. Call your caregiver if you have questions about your condition, treatment, or care.

WHILE YOU ARE HERE:

Informed consent: You have the right to understand your health condition in words that you know. You should be told what tests, treatments, or procedures may be done to treat your condition. Your doctor should also tell you about the risks and benefits of each treatment. You may be asked to sign a consent form that gives caregivers permission to do certain tests, treatments, or procedures. If you are unable to give your consent, someone who has permission can sign this form for you. A consent form is a legal piece of paper that tells exactly what will be done to you. Before giving your consent, make sure all your questions have been answered so that you understand what may happen.

Reverse isolation: You may be put on reverse isolation safety measures if your body is having a hard time fighting infections. You are given a private room to protect you from other people's germs. Caregivers and visitors may wear gloves, a face mask, or a gown to keep their germs away from you. Everyone should wash their hands when entering and leaving your room.

IV: An IV is a tube placed in your vein for giving medicine or liquids. This tube is capped or connected to tubing and liquid.

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.

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 wiped on a flat piece of glass and seen through a microscope. With this test blood cells can be checked for problems.

Treatment options:

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.
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.

Vital signs: This includes taking your temperature, blood pressure, pulse (counting your heartbeat), and respirations (counting your breaths). To take your blood pressure, a cuff is put on your arm and tightened. The cuff is attached to a machine which gives your blood pressure reading. Caregivers may listen to your heart and lungs by using a stethoscope. Your vital signs are taken so caregivers can see how you are doing.

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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