Treatment for MDS

Treatment looks different for different people, depending on your diagnosis. We tailor your treatment plan to you. 

Our myelodysplastic syndrome (MDS) specialists work closely with you, your family and each other to get you back to health. At Fred Hutchinson Cancer Center, we provide all standard therapies for MDS and offer you access to the latest innovations through clinical trials.  

Treatment Plan

Myelodysplastic syndrome treatment at Fred Hutch is highly customized for each patient’s needs.

Your Fred Hutch medical oncologist works with an entire group of MDS specialists. They include other medical oncologists and researchers who are looking for better ways to treat this disease.

Every week, this team gathers to discuss their patients’ treatment plans. This approach means each patient benefits from the experience of the whole group.

With support from the larger team, your physician will:

  • Decide if your MDS needs treatment now, and if not, when treatment should happen
  • Talk about the standard therapy for your type of MDS
  • Find out if any clinical trials match your needs so you can think about joining them

Your medical oncologist will walk you and your caregiver through the treatment plan that has been recommended for you. You will have a chance to share your personal preferences and options, and you will decide together what happens next.

Why Do Treatment Plans Differ?

  • The treatment plan we design for you depends on many things, including:
  • Your MDS subtype
  • Your age and overall health
  • Your needs and preferences, like what type of treatment schedule works in your life and if you want to join a clinical trial

What Is The Standard Therapy For MDS?

There is no one way to treat everyone. Some people need infusions or other medications. Other people need chemotherapy. They might need a blood or marrow transplant. Or they may not need any active treatment for years, but they should be carefully monitored over time. This is called watchful waiting.

At Fred Hutch, our standard always involves caring for you as a whole person. We help you get relief from side effects and provide many other forms of support, like integrative medicine, nutrition counseling and physical therapy.

Our patients can also choose to have promising new MDS therapies that you can only get through a clinical trial. Many people come to Fred Hutch for access to these studies. Your care team will tell you about studies that might be right for you, so you can think about joining them.

Treatment Process

Different subtypes of MDS start, progress and respond to treatments in different ways. We choose, combine and schedule your treatments based on what works for your subtype. Your care team makes sure you understand each type of treatment and all your choices.

Watchful Waiting

Some patients do not need treatment right away. This approach allows your physician to watch your condition but not start treatment until it is needed.

Patients may think that they should have treatment right away. But “watch and wait” with monitoring lets you avoid the side effects of therapy. Watch and wait involves careful monitoring that includes regular exams and blood tests. If you start to have signs or symptoms that appear or change, your physician will recommend starting treatment.

Supportive Care

The goal of supportive care in MDS treatment is to improve quality of life by reducing symptoms caused by low blood cell counts.

Treating Low Red Blood Cell Counts

Patients with symptoms of low red blood cell counts, like extreme tiredness, dizziness and shortness of breath, may have treatment to increase their red blood cell counts. These treatments may include red blood cell infusions and medications that help the bone marrow make more red blood cells.

Treating Low Platelet Counts

Some MDS patients may have low platelet counts that can cause easy bruising or uncontrolled bleeding. These patients may have treatment to increase their platelet counts. This can include platelet transfusions and medications to help the body make platelets.

Treating Low White Blood Cell Counts

MDS and MDS treatments often cause low white blood cell counts. This can increase the risk of infection. Your physician will pay close attention to any infection or fever. If a bacterial infection is found, you will be treated with antibiotics. White blood cell transfusions are generally not used for patients with MDS, so physicians sometimes use medications called growth factors to help increase a patient's white blood cell count. 

Iron Chelation Therapy

Because some MDS patients get many red blood cell transfusions, they may be at risk for “iron overload,” a disorder that can damage the heart and liver. Iron chelation therapy uses medicine to remove the extra iron from the body.
 

Beginning Treatment

The decision to begin treatment is based on a patient’s signs and symptoms. For patients who need to begin treatment, it may include supportive care measures and/or:

  • Hypomethylating agents: These drugs are a type of chemotherapy that may help improve blood cell counts, which may lead to fewer blood transfusions and improve quality of life. In general, they cause less severe side effects. 
  • Immunomodulators: These drugs change different parts of the immune system and may help the body fight cancer.
  • Immunosuppressive therapy: Drugs that suppress (slow down or stop) some parts of the immune system can help some patients with lower-risk MDS. 

Treatment of Higher-Risk MDS

Higher-risk MDS tends to grow quickly and is more likely to progress to acute myeloid leukemia (AML). Treatment for higher-risk patients depends on if they can have a stem cell transplant. Treatment for people who cannot have stem cell transplantation may include:

Treatment for people who cannot have stem cell transplantation may include:

  • Hypomethylating agents: These drugs are a type of chemotherapy that may help improve blood cell counts, which may lead to fewer blood transfusions and improve quality of life. In general, they cause less serious side effects. 
  • Intensive chemotherapy: For patients who are eligible for intensive therapy but who do not have a stem cell donor, the same intensive chemotherapy regimens that are used to treat acute myeloid leukemia (AML) may be used.
  • Targeted therapy: This type of treatment uses drugs or other substances to identify and attack certain types of cancer cells with less damage to normal cells. Not all cancers have the same targets. Each type of targeted therapy works a bit differently, but they all interfere with the growth and survival of cancer cells. 

Blood or Marrow Transplant

If you will need a blood or marrow transplant, a team of Fred Hutch transplant experts will care for you. Your team will include a transplant oncologist, transplant nurse, physician assistant or advanced registered nurse practitioner, pharmacist, registered dietitian, team coordinator and social worker. 

Physicians and researchers at Fred Hutch pioneered blood and marrow transplants decades ago. Today we continue to improve transplant techniques and to develop new options.

Learn more about Blood and Marrow Transplant

Monitoring Your Health

While you are in active treatment, your MDS care team will see you regularly for exams and tests to check:

  • How well your treatment is working
  • If there is any reason to change your treatment
  • If you need help with side effects or supportive care services, like nutrition care or mental health counseling

We update your treatment plan based on the best scientific evidence as well as how your disease responds and what you prefer.

Possible Results of Treatment

Throughout treatment, your care team looks for signs of:

  • Remission: Fewer signs and symptoms of MDS. Partial remission means some signs and symptoms remain, and complete remission means there are no signs or symptoms.
  • Stable disease: No change in the extent or severity. The disease is not going away, but it is not getting worse, either.  
  • Disease progression: The disease is getting worse or spreading.
  • Relapse: The disease, signs or symptoms have come back after they had improved.
  • Refractory disease: The disease does not respond to treatment.

What about “cured”? Sometimes physicians use the word “cured” if you have been in complete remission for at least five years. After five years, cancer is less likely to come back (recur), but recurrence is still possible.

Managing Side Effects

You might be wondering about possible side effects from treatment, like hair loss or nausea from chemotherapy. If you are, it might be helpful to know that many of today’s treatments are more targeted to cancer cells, so they don’t cause as many side effects as standard chemotherapy. 

You are always at the center of everything we do. MDS physicians, nurses and advanced practice providers are here to help prevent or relieve side effects of treatment. 
 

Get Help with Side Effects

Before you begin treatment, we talk with you about what to expect, based on your treatment plan, and what can help if you do have side effects.

At your appointments, we want you to tell us about any side effects you are having. If you have questions or concerns between appointments, you can call or email us. We will make sure you know how to reach care providers at Fred Hutch after hours, if that is when you need us. 

We have many tools to help you feel better, such as:

  • Antibiotics, vaccines and antiviral drugs to prevent or treat infections
  • Transfusions, steroids and medicines that help the immune system treat low levels of blood cells (low blood counts)
  • Nutrition care and medicines to help with digestive problems
  • Conventional and integrative therapies for pain 

Coping with Side Effects

Common Side Effects

Side effects are different depending on which treatment you get. They also depend on other things, like how strong your immune system is. These are some of the common side effects of MDS treatment:

  • Unusual tiredness (fatigue)
  • Hair loss
  • Higher risk of infection (due to low levels of white blood cells)
  • Anemia (due to low levels of red blood cells)
  • Easy bruising or bleeding (due to low levels of platelets)
  • Problems in your digestive tract, like sores in your mouth, nausea, vomiting, constipation or diarrhea
  • Rash or other skin changes
  • Numbness, tingling or pain from nerve damage (neuropathy)
  • Fever 

Supportive Care Services

Along with treating your MDS, Fred Hutch provides a range of services to support you and your caregiver before, during and after treatment. This is part of how we take care of you — not just your disease.

From registered dietitians to chaplains, we have experts who specialize in caring for people with this condition. We understand this may be one of the most intense and challenging experiences you and your family ever go through. We are here to provide the care you need.

Learn about Supportive Care Services

Continuing Care

When your disease is in remission and your active treatment ends, it is still important to get follow-up care on a regular basis. At follow-up visits, you will see the same Fred Hutch team who treated your MDS. They will check your overall health and look for signs that your MDS has come back (signs of recurrence). 

Your team will also help with any long-term side effects (which go on after treatment ends) or late effects (which may start after treatment is over).

Schedule For Follow-up Visits

Just like we personalize your treatment plan for you, we personalize your follow-up schedule, too. Your medical oncologist will base your schedule on many things, including:

  • Which treatments you had and how your disease responded 
  • How the disease and treatments affected you 
  • How long it has been since your treatment ended

Most patients have follow-up appointments for at least five years. Some patients will have follow-up appointments for the rest of their life. It is common to have visits more often in the first months and years after active treatment ends and less often as time goes on.

What Happens at Follow-up Visits

Follow-up for MDS usually means seeing your medical oncologist for a physical exam and having blood tests.

Meet the Myelodysplastic Syndrome Care Team

MDS Team at Fred Hutch