A physical exam, medical history and tests might be used if your doctor suspects you have a myelodysplastic syndrome.
Tests might include:
- Blood tests. Your doctor might order a number of blood tests to determine the number of red cells, white cells and platelets and look for unusual changes in the size, shape and appearance of various blood cells.
- Removing bone marrow for testing. During a bone marrow biopsy and aspiration, a thin needle is used to withdraw (aspirate) a small amount of liquid bone marrow, usually from a spot on the back of your hipbone. Then a small piece of bone with its marrow is removed (biopsy). The samples are examined in a laboratory to look for abnormalities.
Treatment for myelodysplastic syndromes most often targets slowing disease progression, managing symptoms, such as fatigue, and preventing bleeding and infections.
If you have no symptoms, your doctor might recommend watchful waiting with regular exams and lab tests to see if the disease progresses.
Research on myelodysplastic syndromes is ongoing. Ask your doctor about clinical trials for which you might be eligible.
Blood transfusions can be used to replace red blood cells, white blood cells or platelets in people with myelodysplastic syndromes.
Treatment for myelodysplastic syndromes might include medications that:
Increase the number of blood cells your body makes. Called growth factors, these medications are artificial versions of substances found naturally in your bone marrow.
Some growth factors, such as epoetin alfa (Epogen, Procrit) or darbepoetin alfa (Aranesp), reduce the need for blood transfusions by increasing red blood cells. Others, such as filgrastim (Neupogen, Zarxio) might help prevent infections by increasing white blood cells in people with certain myelodysplastic syndromes.
- Stimulate blood cells to mature. Medications such as azacitidine (Vidaza) and decitabine (Dacogen) might improve the quality of life of people with certain myelodysplastic syndromes and reduce the risk of acute myelogenous leukemia.
- Suppress your immune system. These types of medications are used in certain myelodysplastic syndromes, and might lessen the need for red blood cell transfusions.
- Help people with a certain genetic abnormality. If your myelodysplastic syndrome is associated with a gene mutation called isolated del(5q), your doctor might recommend lenalidomide (Revlimid).
- Treat infections. If your condition causes you to have infections, you'll be treated with antibiotics.
Bone marrow transplant
During a bone marrow transplant, also known as a stem cell transplant, high doses of chemotherapy drugs are used to clear out the defective blood cells from your bone marrow. Then the abnormal bone marrow stem cells are replaced with healthy, donated cells (allogeneic transplant).
Newer techniques use less-toxic chemotherapy before the transplant than did older ones. However, bone marrow transplants carry a significant risk of side effects. For this reason, few people with myelodysplastic syndromes are candidates for bone marrow stem cell transplant.
Lifestyle and home remedies
Because people with certain myelodysplastic syndromes have low white blood cell counts, they're subject to recurrent, and often serious, infections.
To reduce your risk of infections:
- Wash your hands. Wash hands frequently and thoroughly with warm, soapy water, especially before eating or preparing food. Carry an alcohol-based hand sanitizer for times when water isn't available.
- Take care with food. Thoroughly cook all meat and fish. Avoid fruits and vegetables you can't peel, especially lettuce, and wash all produce you do use before peeling. To increase safety, you might want to avoid all raw foods.
- Avoid people who are ill. Try to avoid close contact with anyone who is sick, including family members and co-workers.
Preparing for your appointment
You'll likely start by seeing your family doctor or primary care doctor. If your doctor suspects you have a myelodysplastic syndrome, you might be referred to a doctor who specializes in blood disorders (hematologist).
Here's some information to help you get ready for your appointment.
What you can do
When you make the appointment, ask if there's anything you need to do in advance, such as restrict your diet.
Make a list of:
- Your symptoms, including those that seem unrelated to the reason for the appointment, and when they began
- Key personal information, including previous treatment for cancer or exposure to toxic chemicals
- All medications, vitamins and supplements you take, including doses
- Questions to ask your doctor
Consider taking a family member or friend along to help you remember the information you're given.
For myelodysplastic syndromes, questions to ask your doctor might include:
- What type of myelodysplastic syndrome do I have?
- Will I need more tests?
- What is my prognosis?
- What is my risk of leukemia?
- If I need treatment, what are my options and what do you recommend?
- I have these other health conditions. How can I best manage them together?
- Are there restrictions I need to follow?
- Are there brochures or other printed material that I can have? What websites do you recommend?
Don't hesitate to ask other questions.
What to expect from your doctor
Your doctor is likely to ask questions, such as:
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- What, if anything, seems to improve your symptoms?
- What, if anything, appears to worsen your symptoms?