Do You Have Higher-Risk Myelodysplastic Syndrome? What to Know About Treatment

Christin Melton, ELS Disclosures Published on Feb 24, 2023

This article is for people who are living with higher-risk myelodysplastic syndrome (MDS) and their care partners or anyone who wants to learn about higher-risk MDS. The goal of this activity is to help you be able to work with your MDS healthcare team on a treatment plan.

You will learn about:

What MDS is and what it means to have higher-risk MDS
Treatments for higher-risk MDS and their possible side effects
How to work with your MDS healthcare team on a treatment plan
Questions you can ask your MDS healthcare team

Medicines listed in this activity may not be approved by the US Food and Drug Administration (FDA) for MDS but are recommended by the National Comprehensive Cancer Network (NCCN).

Test Your Knowledge

What Is Myelodysplastic Syndrome (MDS)?

MDS is a type of blood cancer where your body doesn't make enough healthy blood cells. To understand MDS, it helps to know how blood cells are made.

Blood cells start life as stem cells. They're made in your bone marrow (a spongy tissue inside your bones). Stem cells grow into young immature blood cells -- called blasts -- before becoming mature blood cells and joining your bloodstream.

There are 3 main types of blood cells, each with an important job:

Red blood cells carry oxygen throughout your body
White blood cells fight infection
Platelets form clots to stop bleeding

You need the right amount of each type to stay healthy.

MDS and Your Blood Cells

With MDS, your bone marrow makes damaged stem cells that stop growing at the blast stage or become dysplastic cells, which are abnormal immature blood cells.

The abnormal blasts crowd your bone marrow, leaving less room for healthy blood cells. Some blasts spill over into your bloodstream, where they don't belong.

There are many types of MDS. Your doctor will look at samples of your blood and bone marrow under a microscope and do other tests to identify which type you have.

MDS often gets worse over time and can become a more serious blood cancer called acute myeloid leukemia or AML.

What's Higher-Risk MDS?

MDS is grouped into lower and higher risk based partly on how likely it is to become AML. Knowing your risk group is important because lower-risk and higher-risk MDS act differently and are managed differently.

Lower-risk MDS causes few or no symptoms in the beginning, grows slowly, and is less likely to become AML
Higher-risk MDS often causes many symptoms, gets worse quickly, and is much more likely to become AML

Some people initially thought to have lower-risk MDS are later found to have higher-risk MDS.

Ways to Help Manage Higher-Risk MDS

There's no "right way" to manage higher-risk MDS. Treatments depend on your MDS type, symptoms, age, overall health, and what matters most to you.

Treatment options for MDS include:

Hematopoietic (stem) cell transplant
Medicines
Clinical trials
Supportive care

Some treatments try to slow MDS down, while others help manage symptoms. People with MDS often need both kinds of treatment.

Your doctor and healthcare team will work with you on a treatment plan. Together, you can discuss treatment choices, their possible side effects, and follow-up testing.

Hematopoietic (Stem) Cell Transplant

Allogeneic hematopoietic cell transplant, or allo-HCT, is the only treatment that can sometimes cure MDS.

After getting chemotherapy or other treatments to destroy the stem cells in your bone marrow, you'll receive an intravenous (IV) infusion of healthy stem cells from a donor. The donor stem cells travel to your bone marrow and start making mature blood cells.

Not everyone wants or is healthy enough to have allo-HCT. It has many side effects, a high risk of death, and doesn't always work. It also requires a long hospital stay lasting several weeks.

Chemotherapy and Other Medicines

Chemotherapy (or "chemo") doesn't cure MDS, but it may help you live longer and improve your symptoms. Chemotherapy is usually given monthly as pills, injections, or infusions.

Hypomethylating agents (HMAs) are the most common form of chemotherapy for higher-risk MDS. Standard chemotherapy agents are sometimes recommended for healthier people whose AML risk is very high.

If your blood stem cells have certain DNA changes, your doctor may recommend medicines besides chemotherapy. Chemotherapy and other medicines for MDS eventually stop working for most people.

Side Effects of Treatment

All treatments can cause side effects. Common side effects of chemotherapy include fever, nausea, vomiting, diarrhea, constipation, tiredness, weakness, and a temporary drop in your blood counts. Standard chemotherapy often causes more severe side effects than HMAs.

Before you start treatment, it's important to ask your doctor and healthcare team about possible side effects, when and how to report them, and how you can work together to manage them.

Clinical Trials

Clinical trials are research studies in people to learn more about a health condition or how to help prevent or manage it. Some clinical trials are looking for ways to improve care for people living with higher-risk MDS.

You can ask your doctor and healthcare team for help finding a clinical trial you may be able to join.

Supportive Care for Higher-Risk MDS

Goals of supportive care are to manage symptoms and health problems due to MDS, as well as treatment side effects, and improve your quality of life. It doesn't treat your cancer.

Depending on your needs, your doctor and healthcare team may recommend medicines, blood transfusions, and other medical care. Supportive care can also include counseling to help you and your family deal with the effects of MDS on your mental and social well-being.