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Myelodysplastic Syndromes - MDS - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2013

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 on the side of your screen. 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 normally 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. In MDS, stem cells do not mature normally, and the number of blasts (immature cells) and dysplastic (abnormally developed) cells increases. Also, the number of healthy mature cells decreases, meaning there are fewer normal 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), and may have neutropenia (a low white blood cell count) and thrombocytopenia (a low platelet count). Also, the chromosomes (long strands of genes) in the bone marrow cells may be abnormal.

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

To continue reading this guide, use the menu on the side of your screen to select another section.

Myelodysplastic Syndromes - MDS - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2013

ON THIS PAGE: You will find information about how many people learn they have MDS each year and some general survival information. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

Approximately 13,000 people in the United States are diagnosed with MDS each year. MDS is rare in people younger than 40, and most people who are diagnosed with MDS are over 60. Death from MDS is often caused by bleeding and infection from low blood cell counts and if the MDS progresses to AML. About one third of patients with MDS develop AML.

Statistics should be interpreted with caution. Estimates are based on data from thousands of people with MDS in the United States each year, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with MDS. Learn more about understanding statistics.

Source: American Cancer Society.

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Myelodysplastic Syndromes - MDS - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2013

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

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 or other toxins, such as tobacco smoke and insecticides, 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). 

Genetics. There are no known direct genetic risk factors associated with MDS. An increased risk of developing MDS is rarely inherited (passed from generation to generation in a family).

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Myelodysplastic Syndromes - MDS - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2013

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 on the side of your screen.

People with MDS may experience the following symptoms or signs. Sometimes, people with MDS do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not MDS. If you are concerned about a symptom or sign on this list, please talk with your doctor.         

  • Fatigue
  • Weakness
  • Easy bruising or bleeding
  • Fever
  • Bone pain
  • Shortness of breath
  • Frequent infections

Your doctor will ask you questions about the symptoms you are experiencing to help find out the cause of the problem, called a diagnosis. This may include how long you’ve been experiencing the symptom(s) and how often.

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 helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select another section, to continue reading this guide.

Myelodysplastic Syndromes - MDS - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2013

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose MDS. Some tests may also determine which treatments may be the most effective. This list describes options for diagnosing MDS, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition
  • Type of disease suspected
  • Signs and symptoms
  • Previous test results

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

Blood tests. A complete blood count (CBC) test measures the numbers of red blood cells, white blood cells, and platelets.

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, and cell morphology (the appearance of cells under the microscope) is looked at to find out if or how the cells are different from healthy cells. 

Bone marrow biopsy and aspiration. These two procedures are similar and often done at the same time. Bone marrow has both a solid and liquid part. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle. An aspiration removes a sample of fluid with a needle. The samples are then analyzed by a pathologist (a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease) to determine the percentage of red blood cells, white blood cells, platelets, and blasts. A common site for the bone marrow biopsy and aspiration 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 (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.

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 one or more chromosomal abnormalities, regardless of the subtype. Primary MDS often has one 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 these 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 helps explain the subtypes of MDS and how the disease is classified. Use the menu on the side of your screen to select Subtypes and Classifications, or you can select 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, 08/2013

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

MDS is classified into several different subtypes, depending on blood cell counts, the percentage of blasts in the bone marrow, and the risk that it will turn into AML. Also, MDS is classified as either primary MDS or secondary MDS, and it may be given a disease staging called an IPSS score. These classifications help doctors plan treatment. 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 seven 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 normal. 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 nucleus (the center of the cell where the genes are found). The white blood cell and platelet cell counts are usually normal. 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 two 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 two 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 seven 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 mutation (change) 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 two to 10 years after such treatment. Secondary MDS is often associated with more complex chromosomal abnormalities.

IPSS system

The International Prognostic Scoring System (IPSS) is another classification system used by doctors to help predict a person’s risk of developing AML and overall survival. The IPSS looks at factors such as the percentage of blasts found in the bone marrow, extent of chromosomal changes, and the degree of cytopenia (low blood cell counts).

Poor prognostic factors include:

  • Low numbers of more than one type of blood cell
  • More blasts in the bone marrow
  • Many chromosomal abnormalities

The total IPSS score places people with MDS into four distinct groups: low risk, intermediate risk-1, intermediate risk-2, and high risk. People with MDS who have a low IPSS score have the best outlook for survival and need less aggressive treatment. For patients with lower IPSS scores, overall survival rates tend to be lower when they need red blood cell transfusions (a procedure in which blood or blood cells from one person are given to another person) compared to those who do not need transfusions. A person diagnosed with a high-risk subtype of MDS and whose IPSS score is high usually needs more intensive treatment.

Recurrent: Recurrent MDS is MDS that has come back after a period of remission (absence of symptoms; also called “no evidence of disease” or NED). If there is a recurrence, the subtype and IPSS score may need to be determined again using the systems above.

Information about the MDS subtype and classification will help the doctor recommend a treatment plan.  The next section helps explain the treatment options for this type of cancer. Use the menu on the side of your screen to select Treatment Options, or you can select 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, 08/2013

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

This section outlines treatments that are the standard of care (the best proven treatments available) for this specific disease. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study to test a new treatment to evaluate whether it is safe, effective, and possibly better than the standard treatment. Your doctor can help you review all treatment options. For more information, see the 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.

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 normal. Treatment options and recommendations depend on several factors, including the subtype and IPSS 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 section, a patient’s IPSS score and MDS subtype help doctors determine when treatment should be begin, but it is important to note that the treatments may not be equally effective for every patient. Take time to learn about 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.

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 can help a person at any stage of illness. 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, and other therapies. You may also receive palliative treatments similar to those meant to treat the MDS, such as chemotherapy (see below). 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 (RA and RARS subtypes) usually receive supportive care to control symptoms and improve quality of life. Supportive care may include:

  • Use of growth factors that help cells mature, such as epoetin (Epogen, Eprex, Procrit), a red blood cell growth factor, and filgrastim (Neupogen), 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 supportive 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 is addressed as quickly as possible. Learn more about palliative care.

Chemotherapy

Chemotherapy is the use of drugs to kill cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Systemic chemotherapy is delivered through the bloodstream to reach cancer cells throughout the body. 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. A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

Chemotherapy used for MDS includes the following drugs:

  • Lenalidomide (Revlimid)
  • Decitabine (Dacogen)
  • Azacitidine (Vidaza)
  • Cytarabine (Cytosar-U)
  • Idarubicin (Idamycin)
  • Daunorubicin (Cerubidine)

People with high-risk subtypes of MDS who have an increased risk of developing AML may benefit from chemotherapy. Medications that are used to treat AML, such as cytarabine, idarubicin or daunorubicin, are also sometimes considered, particularly if the MDS has turned into AML. Overall, 30 to 40% of patients may benefit from chemotherapy for MDS. Factors such as the patient’s age and medical condition are evaluated before starting chemotherapy. Supportive care (see above) is an alternative treatment option for patients when the side effects of chemotherapy are too severe.

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

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

The side effects of chemotherapy 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 chemotherapy and preparing for treatment.  The medications used to treat cancer 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

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. 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 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 two types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO transplants are most commonly the type used for patients with MDS.

The goal of transplantation is to destroy unhealthy cells in the marrow, blood, and other parts of the body and allow replacement blood stem cells to create healthy bone marrow. In most stem cell transplants, the patient is treated with high doses of chemotherapy and/or radiation therapy to destroy as many unhealthy cells as possible. Learn more about bone marrow and stem cell transplantation.

Recurrent MDS

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

A remission can be temporary or permanent. This uncertainty leads to many survivors feeling worried or anxious 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 the 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, including whether the subtype or classification has changed. After testing is done, you and your doctor will talk about your treatment options. Often the treatment plan will include the therapies described above (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.

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 MDS worsens

If MDS continues to worsen despite treatment, patients are encouraged to talk with doctors who are experienced in treating this disease because there can be different opinions about the best treatment plan. Learn more about seeking a second opinion before starting treatment, so you are comfortable with the treatment plan chosen. This discussion may include clinical trials studying new treatments.

Your health care team may recommend a treatment plan that includes a combination of the treatments discussed above. Supportive 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.

If treatment fails

Recovery from MDS is not always possible. If treatment is not successful, the disease may be called advanced or terminal disease.

This diagnosis is stressful, and this 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 six 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 bereavement.

The next section helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select 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, 08/2013

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 on the side of your screen.

Doctors and scientists are always looking for better ways to treat patients with MDS. To make scientific advances, doctors create research studies involving volunteers, called clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. 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 are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

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, by participating in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials is rare. 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.

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.

For specific topics being studied for MDS, learn more in the Latest Research section.

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.

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.

The next section helps explain the areas of research going on today about this type of cancer. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide.

Myelodysplastic Syndromes - MDS - Current Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2013

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 on the side of your screen.

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:

  • Arsenic trioxide (Trisenox)
  • ATG (anti-thymocyte globulin)
  • Azacitidine 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

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.

Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current MDS treatments in order 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 this related item that takes you outside of this guide:

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select another section, to continue reading this guide.

Myelodysplastic Syndromes - MDS - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2013

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of MDS, but it may help to know that preventing and controlling side effects is a major focus of your health care team. This is called palliative or supportive care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

Common side effects from each treatment option for MDS are described in detail within the Treatment section. Learn more about the most common side effects of MDS and different treatments, along with ways to prevent and control them. Side effects depend on a variety of factors, including the subtype of MDS, the length and dosage of treatment(s), and your overall health.

Before treatment begins, talk with your doctor about possible side effects of each type of treatment you will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving you may need during treatment and recovery, as family members and friends often play an important role in the care of a person with MDS. Learn more about caregiving.

In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team, who can help with coping strategies. Learn more about the importance of addressing such needs, including concerns about managing the cost of your medical care.

During and after treatment, be sure to tell the health care team about the side effects you experience, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the After Treatment section or talking with your doctor.

The next section helps explain medical tests and check-ups needed after finishing cancer treatment. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide.

Myelodysplastic Syndromes - MDS - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2013

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

After treatment for MDS, talk with your doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests for the coming months and years. 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. 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).

ASCO offers treatment summary forms to help keep track of the treatment you received and develop a survivorship care plan once treatment is completed.

People treated for MDS are encouraged to follow established guidelines for good health, such as maintaining a healthy weight, not smoking, eating a balanced diet, and receiving appropriate screening for types of cancer other than AML. Talk with your doctor to develop a plan that is best for your needs. Moderate physical activity can help rebuild your strength and energy level after receiving more intensive treatments. Your doctor can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level.  Learn more about the next steps to take in survivorship, including making positive lifestyle changes.

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select 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, 08/2013

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 on the side of your screen.

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.

  • 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?
  • Who will be part of my health care team, and what does each member do?
  • Who will be coordinating my overall treatment and follow-up care?
  • Do I need to start treatment right away?
  • What are my treatment options?
  • What clinical trials are open to me?
  • 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 related to my medical care, who can help me with these concerns?
  • 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?

The next section offers some more resources that may be helpful to you. Use the menu on the side of your screen to select Additional Resources, or you can select 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, 08/2013

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 on the side of your screen.

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. Here are a few sections that may get you started in exploring the rest of Cancer.Net:


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