Myelodysplastic Syndromes
But your chance of having MDS goes up as you age. If you’re over 70, you can be at a higher risk of developing one of these cancers that keeps your blood stem cells from turning into healthy blood cells. As people live longer in the U.S., we’re seeing more cases of myelodysplastic syndromes (also called myelodysplasia). If you have MDS, you might not even know it. Often there aren’t any symptoms, or they can be similar to symptoms of other conditions, like anemia. Bleeding easily or having frequent infections could also be signs of MDS.
Because it can be tricky to diagnose, it’s important to have a care team experienced with this group of cancers. At Cleveland Clinic, we’re home to some of the nation’s top myelodysplasia specialists. Our team of healthcare providers is uniquely qualified to treat this group of cancers with expert, compassionate care.
Why Choose Cleveland Clinic for Myelodysplastic Syndrome Care?
Collaborative care:
Cleveland Clinic focuses on team-based care. This means you get the expertise of different providers from different specialties, selected based on your needs. Your team works together to diagnose your condition, plan personalized treatment and provide follow-up care as long as you need it.
Trusted experts:
We’ll listen carefully, answer your questions and talk with you about your concerns. Your personalized treatment plan will focus on your unique diagnosis and specific needs.
Research and innovation:
We work closely with the MDS International Foundation and the Center of Excellence of the MDS Foundation, and we’ve made important discoveries for treating MDS. We offer access to many clinical trials of new treatments or combinations of treatments for MDS. Your provider will go over options with you if they feel you might benefit from joining a study.
Demonstrated expertise:
Our providers have long-standing clinical and research success in these kinds of cancers. We work with patient advocacy groups and advisory organizations that help set national recommendations and treatment standards. And providers nationwide refer their patients to us for MDS treatment. Meet our team.
Virtual visits:
Cleveland Clinic cares for patients from all over the U.S. — and the world. We know it’s not always easy to travel for appointments when you’re far away or not feeling well. Our virtual visits let you check in with your care team from home using a smartphone, tablet or computer.
National recognition:
Cleveland Clinic is a trusted healthcare leader. We're recognized in the U.S. and throughout the world for our expertise and care.
Diagnosing Myelodysplastic Syndromes at Cleveland Clinic
Myelodysplastic syndromes cause your body to make less of one or more of these blood cell types:
All of this happens in your bone marrow, the spongy center of your bones that makes blood cells. When you have MDS, your stem cells die off in the marrow or soon after they enter your bloodstream. They never become fully formed. They don’t disappear, though. So, it leaves less room for healthy cells to develop and do their jobs.
Types of myelodysplastic syndromes and leukemia risk
Myelodysplastic syndromes are cancers of the bone marrow cells, which normally are responsible for producing mature blood cells. Patients with myelodysplastic syndromes, over time, are at risk of developing a more aggressive bone marrow cell cancer, which is called acute myeloid leukemia (AML). The risk of developing AML in a patient with MDS varies from person to person and can be calculated based on certain features of the disease.
Your providers will evaluate or stage your MDS based on your risk of developing AML. If you’re at low risk, your therapy will focus on slowing MDS progression and alleviating low blood counts. If you have more advanced MDS, you’re at a higher risk of AML, and your therapy goals will focus on preventing AML.
No matter what type of myelodysplastic syndrome you have, you want to be confident you’re getting the correct diagnosis and the most personalized treatment. We streamline the diagnostic process by scheduling the tests you need in fewer visits — with quick updates on results.
What to expect at your first visit
If you’re nervous about your first appointment, that’s OK. It’s understandable. Your provider will ease you into the visit by first getting to know you. They’ll ask you about:
- What kind of symptoms you’re having.
- How long you’ve had these symptoms.
- If the symptoms are getting worse.
- What tests you may have already had.
- If you have or have had any other health conditions.
- If anyone in your family has health conditions.
Your provider will also do a physical exam to look for signs of MDS like a fever, bruising or petechiae (tiny spots of bleeding under your skin). They’ll also order tests to help confirm a diagnosis. We use the test results to diagnose MDS and pinpoint your risk for developing AML.
Testing for myelodysplastic syndrome
- Complete blood count (CBC): Measures white blood cells, red blood cells and platelets.
- Peripheral blood smear: Looks for abnormally shaped or sized (dysplastic) cells.
- Cytogenetic testing: Looks for abnormal chromosome changes using a karyotype test.
- Bone marrow aspiration and biopsy: Test bone marrow and its fluid for blood cell abnormalities.
Second opinions for MDS
Finding out you may have myelodysplastic syndrome can change your world — and leave you wondering about your future. It’s important to find a team of healthcare providers you trust. That’s why we encourage second opinions.
Our expert blood cancer providers take the time to help you understand your diagnosis and explain your treatment options. We also know that cancer doesn’t wait, so we work to schedule your appointment as soon as possible. A second opinion can give you peace of mind when you know you’re in the most capable and compassionate hands.
Meet Our MDS Team
We believe in a team approach to care at Cleveland Clinic. Healthcare providers from different specialties will work together to diagnose and treat your myelodysplastic syndrome. Your team may include:
- Hematologists.
- Geneticists (gene specialists).
- Pathologists.
- Hematopathologists (pathologists specializing in blood cell disorders).
- Bone marrow transplant specialists.
Providers Who Treat Myelodysplastic Syndromes
Locations
Our healthcare providers see patients at convenient locations throughout Northeast Ohio and Florida.Treating Myelodysplastic Syndromes at Cleveland Clinic
We consider many factors when we plan your care — your age, symptoms, risk group and any related conditions you may have, such as anemia or recurrent infections. For some people, high doses of chemotherapy or frequent blood transfusions (common treatments for MDS) can cause more discomfort and anxiety than long-term benefits. But for others, aggressive chemotherapy followed by a stem cell transplant can be highly effective.
Your care team works with you to design a treatment plan that eases symptoms and slows disease progression and recurrence (coming back) with options like:
Medications
Some people with MDS have low levels of neutrophils (a type of white blood cell). This condition, neutropenia, means your body can’t fight infections. Antibiotics prevent infections in people with neutropenia.
Your care team may also recommend blood cell growth factor medication to increase the number of red and white blood cells and platelets in your blood. If you respond well to growth factor medication, you may not need transfusions.
Blood transfusions
You may need a blood transfusion to replace unhealthy blood cells with cells from a healthy donor. Some people with MDS need frequent transfusions to manage the symptoms of anemia or thrombocytopenia.
Immune treatments
Immunosuppressants and immunomodulators may help people with low-risk MDS. Immunosuppressants deactivate the immune system to trigger healthy blood cell production. If you have a certain gene mutation (change), immunomodulators target specific proteins to turn your immune system up or down as needed.
Chemotherapy
Chemotherapy drugs destroy cancer cells but also have side effects. Your healthcare providers will go over what to expect if they feel you may benefit from chemo.
Stem cell transplant
We may recommend a stem cell transplant of healthy blood-forming cells from a donor or from your own blood. We store the healthy cells while you get chemotherapy to destroy abnormal MDS cells. Then, we’ll put the healthy cells back into your blood intravenously (through a vein in your arm). These cells will grow and restore your blood cell levels.
A successful stem cell transplant is the only known treatment that can potentially cure myelodysplastic syndromes. It’s not for everyone, though. Your provider will let you know if your age, general health and ability to handle the intensive chemotherapy necessary before treatment make you a good candidate for the procedure.
Living With Myelodysplastic Syndrome
Myelodysplastic syndrome is a chronic (ongoing) cancer. It may go into remission permanently or may come back even after treatment. That’s why you’ll have regular checkups and testing with your care team. We keep an eye on things and can start treatments to slow or stop MDS from progressing as quickly as possible.
We also understand that living with a chronic condition like MDS can affect your emotional and mental well-being. Cleveland Clinic offers many ways to support you and your loved ones with counseling, support groups and more. We’re here to care for the whole you.
Taking the Next Step
Finding out you have myelodysplastic syndrome probably wasn’t the diagnosis you expected. And while it might be hard to take the next step, it’s important to do it. Getting treatment as quickly as possible — with caring providers you trust — can improve your results. At Cleveland Clinic, you’ll get highly personalized care and support. From streamlined testing and appointments to the latest treatments, we’re on your side from the moment you reach out to us.
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