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Myelodysplastic Syndromes - MDS - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Myelodysplastic Syndromes (MDS). To see other pages, use the menu. Think of that menu as a roadmap to this full guide.

About the blood and bone marrow

The bone marrow is the soft, spongy tissue found in the center of large bones that stores immature cells called stem cells. Stem cells usually mature into white blood cells, red blood cells, and platelets during a process called hematopoiesis. In the body, white blood cells fight infections, red blood cells carry oxygen throughout the body, and platelets help the blood to clot.

About myelodysplastic syndromes

Myelodysplastic syndromes, also known as MDS, are a group of blood and bone marrow disorders. MDS is considered a type of cancer. In MDS, stem cells do not mature as expected. This causes an increase in the number of immature cells, called blasts, and abnormally developed cells, called dysplastic cells. Also, the number of healthy mature cells in the blood decreases, causing the bone marrow to not work well or to stop working. This means that there are fewer healthy red blood cells, white blood cells, and platelets. The numbers of blood cells are often called blood cell counts (see Diagnosis).

Because of the decrease in healthy cells, people with MDS often have anemia, a low red blood cell count. They may also have neutropenia, a low white blood cell count, and thrombocytopenia, a low platelet count. In addition, dysplastic white blood cells and platelets, in particular, may not work correctly. Also, the chromosomes, or long strands of genes, in the bone marrow cells may be abnormal. Sometimes, the numbers of blood cells can be normal, but the blood and bone marrow cells are still abnormal.

There are several subtypes of MDS. Some subtypes of MDS may eventually turn into acute myeloid leukemia (AML). AML is a cancer of the blood in which immature cells called blasts increase and grow uncontrollably.

The next section in this guide is Statistics. It helps explain how many people are diagnosed with MDS and general survival rates. Or, use the menu to choose another section to continue reading this guide.

Myelodysplastic Syndromes - MDS - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will find information about the number of people who diagnosed with MDS each year. Remember, survival rates depend on several factors. Use the menu to see other pages.

Approximately 13,000 people in the United States are diagnosed with MDS each year. Most people who are diagnosed with the disease are 65 and older.

Death from MDS is often caused by bleeding and/or infection from low blood cell counts or after the disease becomes acute myeloid leukemia (AML). About a third of patients with MDS develop AML.

It is important to remember that statistics on MDS are an estimate. The estimate comes from annual data based on the number of people with MDS in the United States. People should talk with their doctor if they have questions about this information. Learn more about understanding statistics.

Sources: American Cancer Society and the MDS Foundation.

The next section in this guide is Risk Factors. It explains what factors may increase the chance of developing this disease. Or, use the menu to choose another section to continue reading this guide.  

Myelodysplastic Syndromes - MDS - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2017

ON THIS PAGE: You will find out more about the factors that increase the chance of developing MDS. To see other pages, use the menu.

A risk factor is anything that increases a person’s chance of developing a disease. Although risk factors often influence the development of MDS, most do not directly cause MDS. Some people with several risk factors never develop MDS, while others with no known risk factors do. However, knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

The following factors may raise a person’s risk of developing MDS:

  • Age. MDS occurs most often in people older than 60 and is less common in younger people. MDS is rare in children.

  • Gender. Men develop MDS more often than women.

  • Exposure to environmental/occupational hazards. Long-term exposure to benzene, tobacco smoke, insecticides, and other toxins may increase the risk of developing MDS.

  • Previous chemotherapy or radiation treatment. Approximately 20% of people who develop MDS previously received chemotherapy or radiation therapy. This type of MDS is called secondary MDS (see Subtypes and Classification).

  • Genetics. Most often, MDS is not inherited, meaning passed from parent to child within a family. However, some genetic changes may increase a person’s risk of developing MDS. Many of these are linked with the inherited genetic conditions listed below, with the specific genes involved when identified. Research continues to identify other likely genetic factors.

    • Fanconi anemia

    • Familial MDS/AML (GATA2, DDX41)

    • Thrombocytopenia 2 (ANKRD26)

    • Thrombocytopenia 5 (ETV6)

    • Familial aplastic anemia (SRP72)

    • Shwachman-Diamond syndrome

    • Diamond Blackfan anemia

    • Congenital neutropenia

    • Familial platelet disorder

    • Myeloid neoplasms with germline predisposition (ATG2B, GSKIP)

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems this disease can cause. Or, use the menu to choose another section to continue reading this guide.

Myelodysplastic Syndromes - MDS - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu.

People with MDS may experience the following symptoms or signs. Sometimes, people with MDS do not have any of these changes. Or, the cause of a symptom may be another medical condition that is not MDS.           

  • Fatigue

  • Weakness

  • Easy bruising or bleeding

  • Fever

  • Bone pain

  • Shortness of breath

  • Frequent infections

If you are concerned about any changes you experience, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

Relieving the symptoms caused by MDS is an important part of your care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about symptoms you experience, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu to choose another section to continue reading this guide.

Myelodysplastic Syndromes - MDS - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. To see other pages, use the menu.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn the extent of the disease. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know whether an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

This list describes options for diagnosing this type of cancer, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your signs and symptoms

  • Your age and medical condition

  • The results of earlier medical tests

In addition to a physical examination, the following tests may be used to diagnose MDS:

  • Blood tests. A complete blood count, or CBC, measures the numbers of red blood cells, white blood cells, and platelets. Blood tests may also be done to rule out other conditions that can cause symptoms similar to MDS, such as low levels of vitamin B12, folate, copper, and thyroid problems.

  • Peripheral (circulating) blood smears. A drop of blood is placed on a slide, smeared into a thin film, and placed under a microscope for examination. The percentages of the different types of cells are counted. Also, the appearance of cells under the microscope, called cell morphology, is looked at to find out if or how the cells are different from healthy cells.

  • Bone marrow aspiration and biopsy. These 2 procedures are similar and often done at the same time to examine the bone marrow. Bone marrow has both a solid and liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle.

    A pathologist then analyzes the sample(s) to determine the percentage of red blood cells, white blood cells, platelets, and blasts. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. A common site for the bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The skin in that area is numbed with medication beforehand, and other types of anesthesia, which is medication to block the awareness of pain, may be used. The appearance of the bone marrow tissue, along with blood cell counts and chromosomal analysis (see below), is needed to confirm a diagnosis of MDS.

  • Molecular testing. Your doctor may recommend running laboratory tests on a bone marrow sample to identify specific genes, proteins, and other factors unique to MDS. Results of these tests will help decide your doctor plan treatment, find out how treatment is working, and the likelihood of recovery after a stem cell/bone marrow transplant (see Treatment Options).

  • Cytogenetic (chromosomal) analysis. Looking at the chromosomes of the cells in the blood and bone marrow shows specific abnormalities that help doctors tell the difference between MDS and other blood disorders. About 50% of people with MDS have 1 or more chromosomal abnormalities, regardless of the subtype. Primary MDS often has 1 chromosomal abnormality. Secondary MDS often has many or complex chromosomal changes. The most common abnormalities affect chromosomes 5, 7, 8, 11, 12, and 20.

  • Immunophenotyping. Immunophenotyping is the examination of antigens, a specific type of protein, on the surface of the MDS cells. Immunophenotyping can help identify the type of MDS.

After diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is MDS, these results also help the doctor describe the disease.

The next section in this guide is Subtypes and Classification. It explains the system doctors use to describe MDS. Or, use the menu to choose another section to continue reading this guide.  

Myelodysplastic Syndromes - MDS - Subtypes and Classification

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will learn about how doctors describe MDS. This is called subtype and classification. To see other pages, use the menu.

MDS is classified into several different subtypes based on the following features:

  • Blood cell counts

  • Percentage of blasts in the bone marrow

  • Risk that it will turn into AML

It is also classified as either primary MDS or secondary MDS. And, MDS is given a stage called an IPSS-R score. These classifications help doctors plan treatment and predict a patient’s prognosis, which is the chance of recovery. Each is described below in more detail.

WHO system for MDS subtypes

The World Health Organization (WHO) developed a classification system for MDS to standardize the definitions of the different subtypes. The 7 subtypes of MDS in this system include: 

  • Refractory anemia (RA). The primary sign of RA is anemia. White blood cell counts and platelet counts are healthy. There are less than 5% blasts found in the bone marrow. This subtype of MDS does not often turn into AML.

  • Refractory anemia with ringed sideroblasts (RARS). People with this subtype of MDS have anemia, similar to those with RA, except more than 15% of the red blood cells are sideroblasts. A sideroblast is a red blood cell in which the iron in the cell appears to be in a ring around the center of the cell where the genes are found, called the nucleus. The white blood cell and platelet cell counts are usually healthy. People diagnosed with RARS have a low risk of developing AML.

  • Refractory cytopenia with multilineage dysplasia (RCMD). In this subtype, people have less than 5% blasts and less than 15% ringed sideroblasts in the bone marrow. The other bone marrow cells look abnormal when viewed under the microscope. At least 2 of the blood cell counts are low. RCMD may eventually turn into AML.

  • Refractory cytopenia with multilineage dysplasia and ringed sideroblasts (RCMD-RS). This subtype is similar to RARS, in which people have anemia and more than 15% sideroblasts. The other bone marrow cells also look abnormal when viewed with a microscope. In addition, at least 2 types of blood cell counts are low. RCMD-RS may eventually turn into AML.

  • Refractory anemia with excess blasts (RAEB). People with RAEB can have decreases in all or some of their blood cell counts. There are less than 5% blast cells in the blood and 5% to 20% blasts in the bone marrow. People with more than 20% blasts in the bone marrow are diagnosed with AML. People with RAEB may also have lower white blood cell and platelet counts. About 40% of people diagnosed with RAEB eventually develop AML.

  • Myelodysplastic syndrome, unclassified (MDS-U). People diagnosed with this subtype have decreased numbers of white blood cells, red blood cells, or platelets, but do not have the specific signs of the other MDS subtypes.

  • MDS associated with isolated del(5q). People with this subtype have anemia and fewer than 5% blasts, and genetic material is missing from chromosome 5.

  • CMML and JMML. In addition to the 7 MDS subtypes above, chronic myelomonocytic leukemia (CMML) and juvenile myelomonocytic leukemia (JMML) are types of blood cancers that the WHO classifies as “mixed myelodysplastic/myeloproliferative diseases.” Unlike other types of MDS in which blood counts are low, white blood cell counts are higher in these subtypes. Both CMML and JMML begin after a change, or mutation, happens in a type of blood cell called a monocyte. CMML generally occurs in people ages 65 to 75. JMML is most common in children younger than 6. Treatment is similar to MDS and can include chemotherapy and/or stem cell transplantation (see Treatment Options).

Primary/secondary MDS

In addition to subtype, MDS is called either primary or secondary MDS. Primary MDS is much more common than secondary MDS. About 80% of people with MDS have primary MDS.

  • In primary MDS, no apparent risk factors can be found. This may also be called de novo MDS.

  • Secondary MDS occurs because of damage to the DNA from chemotherapy or radiation therapy previously given to treat another medical condition. MDS can develop 2 to 10 years after such treatment. Secondary MDS is often associated with more complex chromosomal abnormalities.

IPSS-R system

The revised International Prognostic Scoring System (IPSS-R) is another classification system used by doctors to help predict a person’s risk of developing AML and overall survival. The IPSS-R looks at factors such as the percentage of blasts found in the bone marrow, type and extent of chromosomal changes, and levels of hemoglobin found in red blood cells, platelets, and a type of white blood cell called neutrophils.

Poor prognostic factors include:

  • Type and number of chromosomal changes

  • Percentage of blasts in the bone marrow

  • Low levels of hemoglobin, platelets, and neutrophils

The total IPSS-R score places people with MDS into 5 distinct groups:

  • Very low risk

  • Low risk

  • Intermediate risk

  • High risk

  • Very high risk

People with MDS who have a lower IPSS-R score have the best outlook for survival and need less aggressive treatment. For patients with lower IPSS-R scores, overall survival rates tend to be lower when they need red blood cell transfusions. A red blood cell transfusion is a procedure in which blood or blood cells from 1 person are given to another person. A person diagnosed with a high-risk subtype of MDS and whose IPSS-R score is high usually needs more intensive treatment.

Recurrent MDS

Recurrent MDS is MDS that has come back after a period of remission, or absence of symptoms, also called “no evidence of disease” or NED. If the MDS does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Information about the subtype and classification will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu to choose another section to continue reading this guide.

Myelodysplastic Syndromes - MDS - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will learn about the different ways doctors use to treat people with MDS. To see other pages, use the menu.

This section tells you the treatments that are the standard of care for MDS. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn if it is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections.

Treatment overview

For MDS, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. Your health care team may include a variety of other health care professionals, including physician assistants, nurses, social workers, pharmacists, counselors, dietitians, and others.

Descriptions of the most common treatment options for MDS are listed below. The goal of treatment is to bring about a remission and to bring blood counts back to healthy levels. Treatment options and recommendations depend on several factors, including the subtype and IPSS-R score of MDS, the risk of developing AML, possible side effects, and the patient’s preferences, age, and overall health. As explained in the Subtypes and Classification section, a patient’s IPSS-R score and MDS subtype help doctors determine when treatment should begin. It is important to note that the treatments may not be equally effective for every patient.

Your care plan may also include treatment for symptoms and side effects, an important part of your medical care. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your doctor and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Chemotherapy

Chemotherapy is the use of drugs to destroy unhealthy cells, usually by stopping those cells’ ability to grow and divide. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication, or by a hematologist, a doctor who specializes in treating blood disorders.

Systemic chemotherapy gets into the bloodstream to reach unhealthy cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or combinations of different drugs at the same time.

Common drugs for MDS include:

Hypomethylating drugs

  • Azacitidine (Vidaza)

  • Decitabine (Dacogen)

Both azacitidine and decitabine are approved by the U.S. Food and Drug Administration (FDA) to treat all types of MDS. However, these drugs are used most often for patients with higher IPSS-R scores. Both can be given in the doctor’s office or clinic, and patients often need more than 1 round of treatment given monthly before it starts improving a patient’s condition.

Conventional drugs

  • Cytarabine (Cytosar-U)

  • Daunorubicin (Cerubidine)

  • Idarubicin (Idamycin)

People with high-risk subtypes of MDS who have an increased risk of developing AML may benefit from conventional chemotherapy. Overall, 30% to 40% of patients may benefit from chemotherapy for MDS. Your doctor will consider factors such as your age and health before making any recommendations for conventional chemotherapy.

Immunomodulatory drugs (IMiD)

  • Lenalidomide (Revlimid)

Lenalidomide is taken by mouth, or an oral, medication that is very effective when given to patients with low-risk MDS and 5q chromosomal abnormalities (See Subtypes and Classification). Therefore, it is very important for doctors to find out whether a patient has this chromosomal change.

In general, the side effects of drug therapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.

Learn more about the basics of chemotherapy and preparing for treatment. The medications used to treat MDS are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Immunotherapy

Immunotherapy, also called biologic therapy, is designed to boost the body's natural defenses to fight MDS. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. Although this is rarely used for MDS, it may be an option for some patients. A type of immunotherapy for MDS is anti-thymocyte globulin (ATGAM, Thymoglobulin), which is given after chemotherapy. Learn more about the basics of immunotherapy.

Stem cell transplantation/bone marrow transplantation

High-dose chemotherapy with stem cell/bone marrow transplantation is the only current treatment that can produce a long-term remission. However, transplantation is a higher-risk treatment and may not be recommended for patients who are older or have other medical problems. However, for patients ages 50 to 75, an ALLO transplant may be an option after reduced intensity treatment. Before recommending transplantation, your doctor will talk with you about the risks of this treatment and consider several other factors, such as the subtype of MDS, results of any previous treatment, and your age and general health.

A stem cell transplant is a medical procedure in which bone marrow that contains unhealthy cells is replaced by highly specialized cells, called hematopoietic stem cells, that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

There are 2 types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the patient’s own stem cells. In both types, the goal is to destroy all of the unhealthy cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow. An ALLO transplant is usually the type recommended for people with MDS. Learn more about the basics of stem cell and bone marrow transplantation.

Getting care for symptoms and side effects

MDS and its treatment often cause side effects. In addition to treatment for MDS, an important part of care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. It works best when palliative care is started as early as needed in the treatment process. People often receive treatment for MDS and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. You may also receive palliative treatments similar to those meant to treat the MDS, such as chemotherapy (see above). Talk with your doctor about the goals of each treatment in the treatment plan.

Some people with MDS who do not have any symptoms may only need close monitoring, including measuring blood counts, to watch for any symptoms. People with low-risk MDS, meaning those with RA and RARS subtypes, usually receive supportive care to control symptoms and improve quality of life. Supportive care may include:

  • Transfusions to treat anemia and thrombocytopenia

  • Use of growth factors that help cells mature, such as epoetin (Epogen, Eprex, Procrit), a red blood cell growth factor, and filgrastim (Neupogen, Zarxio), a white blood cell growth factor

  • Antibiotics to fight infection, a common side effect of low white blood cell counts

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care.

If MDS worsens

If MDS continues to worsen despite treatment, it is a good idea to talk with doctors who have experience in treating the disease. Doctors can have different opinions about the best standard treatment plan. Also, clinical trials might be an option. Learn more about getting a second opinion before starting treatment, so you are comfortable with your treatment plan chosen.

Your treatment plan may include a combination of the treatments discussed above. Palliative care will also be important to help relieve symptoms and side effects.

For most patients, worsening MDS is very stressful and, at times, difficult to bear. Patients and their families are encouraged to talk about the way they are feeling with doctors, nurses, social workers, or other members of the health care team. It may also be helpful to talk with other patients, including through a support group.

Remission and the chance of recurrence

A remission is when MDS cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the disease will come back. While many remissions are long-lasting, it is important to talk with your doctor about the possibility of the disease returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the disease does return. Learn more about coping with the fear of recurrence.

If MDS does return after the original treatment, it is called recurrent MDS. When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your doctor will talk about your treatment options. Often the treatment plan will include the treatments described above, such as chemotherapy and stem cell transplantation, but they may be used in a different combination or given at a different pace. Your doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent disease. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

People with recurrent MDS often experience emotions such as disbelief or fear. Patients are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with a recurrence.

If treatment fails

Recovery from MDS is not always possible. If the MDS cannot be cured or controlled, the disease may be called advanced or terminal.

This diagnosis is stressful, and advanced MDS is difficult to discuss for many people. However, it is important to have open and honest conversations with your doctor and health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

Patients who have advanced disease and who are expected to live less than 6 months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Learn more about advanced care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss.

The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with MDS. Or, use the menu to choose another section to continue reading this guide.  

Myelodysplastic Syndromes - MDS - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for patients with MDS. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the FDA was tested in clinical trials.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Patients who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there is no guarantee that the new treatment will be safe, effective, or better than what doctors use now.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying ways to prevent cancer.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating MDS. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with MDS.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” However, placebos are usually combined with standard treatment in most cancer clinical trials. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options, so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trials before it ends.

Finding a clinical trial

Research through clinical trials is ongoing. For specific topics being studied for MDS, learn more in the Latest Research section.

Cancer.Net offers a lot of information about clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials.

In addition, this website offers free access to a video-based educational program about clinical trials, located outside of this guide.

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for MDS. Or, use the menu to choose another section to continue reading this guide.   

Myelodysplastic Syndromes - MDS - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will read about the scientific research being done now to learn more about MDS and how to treat it. To see other pages, use the menu.

Doctors are working to learn more about MDS, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your doctor about the diagnostic and treatment options best for you.

  • New drugs and drug combinations. Researchers are looking at treatments with the following:

    • Azacitidine given by mouth and in combination with other drugs

    • Decitabine in combination with other drugs

    • Lenalidomide in patients who do not have abnormalities of chromosome 5

    • Drugs called histone deacetylase inhibitors

    • Drugs called polo-kinase inhibitors

    • Different approaches to stem cell/bone marrow transplantation

    Some of these medications, such as azacitidine, decitabine, and lenalidomide, have been approved by the FDA for the treatment of MDS and are now being evaluated in different doses and schedules and in combination with other drugs.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current MDS treatments to improve patients’ comfort and quality of life.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding MDS, explore these related items that takes you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance in how to cope with the physical, emotional, and social changes that MDS and its treatment can bring. Or, use the menu to choose another section to continue reading this guide.  

Myelodysplastic Syndromes - MDS - Coping with Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of MDS and its treatment. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu.

Every treatment for cancer can cause side effects or changes to your body and how you feel. For many reasons, people don’t experience the same side effects even when given the same treatment for the same disease. This can make it hard to predict how you will feel during treatment.

As you prepare to start treatment for MDS, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of treatment “palliative care.” It is an important part of your treatment plan, regardless of your age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for MDS are described within the Treatment Options section. Learn more about side effects of MDS and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the subtype and classification of MDS, the length and dose of treatment, and your general health.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a diagnosis of MDS. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in return.

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

Coping with financial effects

Treatment for MDS can be expensive. It is often a big source of stress and anxiety for people and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost stops them from following or completing their treatment plan. This can put their health at risk and may lead to higher costs in the future. Learn more about managing financial considerations, in a separate part of this website.

Caring for a loved one with MDS

Family members and friends often play an important role in taking care of a person with MDS. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away.

Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:

  • Providing support and encouragement

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward, too. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of MDS.

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan.

The next section in this guide is Follow-up Care. It explains the importance of check-ups after treatment is finished. Or, use the menu to choose another section to continue reading this guide.  

Myelodysplastic Syndromes - MDS - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will read about your medical care after treatment is completed, and why this follow-up care is important. To see other pages, use the menu.

Care for people diagnosed with MDS doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the disease has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. People treated for MDS need ongoing tests for blood counts and bone marrow function to check if or how the disease changes, how well current treatment is working, and whether additional treatment is needed. Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will also ask specific questions about your health. Some people may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors including the subtype and classification of MDS originally diagnosed and the types of treatment given.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on your individual treatment plan and your overall health. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them. People who received a stem cell/bone marrow transplant need follow-up care more often. This includes watching for symptoms and signs of graft-versus-host disease, a possible side effect of an ALLO transplantation (See Treatment Options).

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the treatment you received and develop a survivorship care plan once treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see the health care team involved in their care for MDS, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the possible side effects, health insurance rules, and your personal preferences.

If a doctor who was not directly involved in your care for MDS will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with him or her, as well as all future health care providers. Details about your treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis of MDS. Or, use the menu to choose another section to continue reading this guide.  

Myelodysplastic Syndromes - MDS - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will read about how to cope with challenges in everyday life after a diagnosis of MDS. To see other pages, use the menu.

What is survivorship?

The word “survivorship” means different things to different people. Common definitions include:

  • Having no signs of disease after finishing treatment.

  • Living with, through, and beyond the disease. According to this definition, survivorship begins at diagnosis and includes people who continue to have treatment over the long term, to either reduce the risk of recurrence or to manage chronic disease.

Survivorship is one of the most complicated parts of having MDS. This is because it is different for everyone.  

Survivors may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after the diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain of how to cope with everyday life.

Survivors may feel some stress when frequent visits to the health care team end following treatment. Often, relationships built with the health care team provide a sense of security during treatment, and people miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexuality and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action you choose.

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with MDS, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving in this article.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make positive lifestyle changes.

People recovering from MDS are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

In addition, it is important to have recommended medical check-ups and tests (see Follow-up Care) to take care of your health. Rehabilitation may also be recommended, and this could mean any of a wide range of services such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your needs.

Looking for More Survivorship Resources?

For more information about survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes next after finishing treatment.

  • Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including for survivors in different age groups.

The next section offers Questions to Ask the Doctor to help start conversations with your health care team. Or, use the menu to choose another section to continue reading this guide.

Myelodysplastic Syndromes - MDS - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu.

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

Questions to ask after getting a diagnosis

  • What subtype of MDS do I have?

  • What risk group am I in? What does this mean?

  • Can you explain my pathology report (laboratory test results) to me?

  • What is my prognosis?

  • How do I find a doctor who specializes in the treatment of MDS?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • Do I need to start treatment right away?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment?

  • What clinical trials are available for me? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the MDS, manage my symptoms, or both?

  • How often will I need to be treated, and for how long will I receive treatment?

  • Will treatment be given in the hospital, or can it be given at the doctor’s office or clinic?

  • Do I need someone to come with me when I get my treatment?

  • What are the possible side-effects of this treatment, both in the short term and the long term?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Could this treatment affect my sex life? If so, how and for how long?

  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?

  • If I’m worried about managing the costs of cancer care, who can help me?

  • What follow-up tests will I need, and how often will I need them?

  • What support services are available to me? To my family?

  • Is there concern about this disease occurring in other members of my family?

  • Whom should I call for questions or problems?

  • Is there anything else I should be asking?

Questions to ask about having chemotherapy, immunotherapy, or a stem cell transplant

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • What are the possible long-term effects of having this treatment?

  • What can be done to relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the treatment I received?

  • What follow-up tests will I need, and how often will I need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • Who will be leading my follow-up care?

  • What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu to choose another section to continue reading this guide.   

Myelodysplastic Syndromes - MDS - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 10/2016

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about medical care and treatment. This is the final page of Cancer.Net’s Guide to Myelodysplastic Syndromes (MDS). To go back and review other pages, use the menu.

Cancer.Net includes many other sections about the medical and emotional aspects of MDS, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Myelodysplastic Syndromes (MDS). Use the menu to select another section to continue reading this guide.