The main goal of treatment for myelodysplastic syndrome (MDS) is to improve the number of healthy blood cells circulating in your bloodstream. Treatment can vary greatly from person to person, so it’s important to come to a center, like Seattle Cancer Care Alliance (SCCA), that has specialized expertise.
SCCA experts offer comprehensive treatment for all subtypes of myelodysplastic syndrome.
A diagnosis of MDS can feel overwhelming. We have an experienced, compassionate team ready to help.
- Expertise at SCCA
- Watchful waiting
- Supportive care
- Leukemia-type chemotherapy
- Bone marrow transplant
- Clinical studies
- Next steps
MDS expertise at SCCA
Everything you need is here
We have hematologists who specialize in MDS, the most advanced diagnostic and treatment programs and extensive support. Each year, we see about 200 patients with MDS or related diseases — including people whose disease was just found and many who began treatment elsewhere and then chose SCCA for their ongoing care.
Innovative MDS therapies
SCCA patients have access to advanced therapies being explored in clinical studies for MDS conducted here and at our founding organizations Fred Hutchinson Cancer Research Center and UW Medicine.
MDS treatment tailored to you
We view treatment as a collaborative effort. Your doctor will develop an individualized long-range management plan — considering everything medical science has to offer, as well as how and when different treatments should be used in your particular situation — and discuss all your options with you.
Along with your hematologist, nurses and nurse case manager, we’ll involve additional experts who specialize in treating people with blood disorders and cancer if you need them — experts like a social worker, physical therapist, palliative care professional or dietitian.
Ongoing care and support
Throughout treatment, your team provides follow-up care on a schedule tailored to you. During these visits, you’ll have an exam and may need tests to detect signs of disease. Follow-up visits are a good time to talk with your doctor about how to manage any side effects and how to enhance your well-being and quality of life.
Personalized risk assessment
The SCCA Hematologic Malignancy Genetics Clinic offers personalized risk assessment and follow-up care for adult patients and family members who may be at increased risk for developing blood-based malignancies due to an underlying genetic cause, including some people with MDS.
Watchful waiting for MDS
If your disease is mild and interferes only a little or not at all with your usual activities, your doctor may recommend watchful waiting. This means you receive no treatment, but you visit your doctor on a regular basis (or if you notice changes) to check your health. Some people with MDS go for several years with no major health changes.
Supportive care for MDS
If you have symptoms from your MDS, your doctor may recommend supportive care — steps to help reduce your symptoms. For MDS, supportive care may include medicines and transfusions.
You might receive:
- The growth factor erythropoietin (EPO) to increase your red blood cells
- The growth factor granulocyte colony-stimulating factor (G-CSF) or granulocyte macrophage colony-stimulating factor (GM-CSF) to increase your white blood cells
- Medicines to manipulate your immune system
- Medicines that may reduce your need for transfusions, such as lenalidomide (Revlimid) and antithymocyte globulin (ATG)
- Antibiotics and antiviral medicines to fight infections that your white blood cells cannot fight on their own
Transfusions add red blood cells or platelets to your bloodstream if medicines do not increase your levels enough.
If you have more severe symptoms, your doctor is likely to recommend treatments aimed at controlling your underlying disease, such as:
- Medicines to treat MDS
- Chemotherapy like that given for acute myeloid leukemia
- Bone marrow transplantation
Medicines to treat MDS
Three medicines are used to treat MDS.
- Lenalidomide (Revlimid) — to reduce the need for transfusions; given as a pill
- Azacitidine (Vidaza) — to help increase red blood cells, white blood cells and platelets and reduce blasts (very immature abnormal cells); given as an injection or an infusion
- Decitabine (Dacogen) — which may be toxic to abnormal MDS cells and promote growth of normal blood cells; given as an infusion
Many questions remain about how doctors can use azacitidine and decitabine most effectively. Clinical studies are going on to try to answer these questions.
Your SCCA team will talk with you about the medicines we recommend for you, how you’ll receive them, your treatment schedule and what to expect. We’ll also explain how to take the best possible care of yourself during treatment and after, and we’ll connect you with medical and support resources throughout SCCA.
Leukemia-type chemotherapy for MDS
Doctors may use intensive anti-cancer medicines, or chemotherapy, like that used for acute myeloid leukemia, to kill myelodysplastic cells and control MDS.
You might receive chemotherapy through an intravenous (IV) line or by mouth. (Rarely, people with MDS receive chemotherapy directly into their spinal fluid to treat their central nervous system.) The medicines can help control your body’s production of abnormal blood cells. Chemotherapy for MDS can lower blood cell counts at first but may lead to remission (a period of no detectable disease activity).
Bone marrow transplant for MDS
If your MDS is severe or advanced, your team may recommend a bone marrow transplant (also called a hematopoietic cell transplant). This is currently the only type of treatment that has the potential to cure MDS.
In some groups of patients with MDS, the success rate (how many people are cured of their disease) is as high as 70 to 75 percent. Some of these patients have now been followed for 25 years or longer by their healthcare teams, with no sign that the disease has returned.
People having a transplant for MDS get stem cells from a donor (allogeneic transplant). The transplant works in two ways.
- After you receive strong chemotherapy to eliminate the diseased cells in your marrow, the donor’s healthy stem cells restart your body’s ability to form blood cells.
- White blood cells from the donor may recognize as foreign and attack any myelodysplastic cells that remain in your body.
A transplant is not right for everyone. For instance, it may be too challenging for older people, especially if they have other health problems along with MDS, as many older people do. Though some people have had successful transplants at age 70, a transplant is not the standard treatment in this age group.
That said, more people are eligible for allogeneic transplants than ever before, due to advances available at SCCA, such as:
- Non-myeloablative (reduced-intensity) transplants, which use lower-dose chemotherapy and are less toxic, generally with milder side effects
- Transplants using stem cells from donated umbilical cord blood or haploidentical (half-matched) donors
Clinical studies for MDS
Most people with MDS receive treatment through clinical studies, also called clinical trials, because these offer a way to get the latest promising therapies. Access to clinical studies by researchers at SCCA and our founding organizations Fred Hutch and UW Medicine is one reason many patients come to SCCA.
Your doctor can identify clinical trials that match your circumstances and talk with you about whether and how to participate. If you are eligible for a trial, we strongly recommend considering this option.
Medicines and chemotherapies
Agents that showed promise in pilot studies and are being tested in clinical studies may include:
- Azacitidine given by mouth
- Clofarabine (Clofarex, Clolar) given by mouth
- Decitabine given by mouth
- Rigosertib (Estybon)
- Venetoclax (Venclexta)
- Vorinostat (Zolinza)
- Different combinations of chemotherapy agents
- Different transplant regimens, such as radiolabeled BC8 (anti-CD45), which is an experimental transplant conditioning agent, and the chemotherapy medicine treosulfan
Doctors are also working on studies to:
- Determine whether immune cells in a person with MDS can be modified so they will attack and kill the MDS cells (a type of immunotherapy)
- Understand the chain of events that leads to severe MDS, with the hope of finding an agent that blocks one or more of these events to at least stabilize the disease
At Fred Hutch, researchers are also using antibodies to deliver radiation specifically to disease-causing cells. This lets doctors get more powerful doses of radiation where it’s needed to destroy the disease, while sparing most healthy tissue. People who receive targeted radiotherapy may be able to have low-dose transplant conditioning, which tends to cause milder side effects. This combination was first used successfully in high-risk MDS patients here who had no other curative options.
More research questions
Our researchers are working on a number of other topics related to MDS, such as:
- How to identify subtypes of MDS more precisely, come up with more specific treatments and match each patient with the most effective medicines
- What the best approach is for people who receive a bone marrow transplant, including chemotherapy intensity and transplant timing
- What causes MDS, including whether changes in blood stem cells that occur naturally with age can provide clues and whether environmental factors play a role