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Myelodysplastic Syndromes

Overview

Getting treated for myelodysplastic syndromes at City of Hope gives you access to unparalleled treatment options and exceptional care from experts in all aspects of these rare blood disorders. And it means you are the focus of a team of world class scientific leaders that know the newest and best treatments for myelodysplasia.

Comprehensive care

City of Hope is one of only a few dozen centers in the country that treat diseases like myelodysplasia using a comprehensive approach — by a multidisciplinary team whose sole focus is treating these types of blood disorders. Your care includes regular interaction and input from a team that includes hematologists and hematopathologists — along with nurses, social workers and specially trained support staff. This team brings together deep experience and diverse perspectives — shaped by seeing and treating rare diseases every day — to arrive at the ideal treatment for every patient.

If you have been diagnosed with myelodysplastic syndromes or are looking for a second opinion consultation about your treatment, or contact us at 800-826-HOPE. Please visit Making Your First Appointment for more information.

City of Hope is recognized internationally for research and breakthrough treatments of blood disorders and cancers. Our Hematologic Malignancies and Stem Cell Transplantation Institute is one of the largest bone marrow and blood stem cell transplant centers in the country, consistently producing some of the best outcomes.

Coordinated, compassionate care

City of Hope has an unmatched reputation for coordinated, compassionate care. For each patient we bring together a broad array of expertise from multiple disciplines and offer leading edge therapeutic options including:

  • State-of-the-art diagnostic tools
  • Pioneering drug research and clinical trials
  • Unique transfusion, transplant and chemotherapy options

We are designated a comprehensive cancer center by the National Cancer Institute, and for over a decade, U.S. News & World Report has named City of Hope one of the top cancer hospitals in America.

NEWS & BREAKTHROUGHS

Myelodysplastic syndromes, or MDS, refers to a group of blood disorders that affect approximately 13,000 people in the United States each year, according to the American Cancer Society. In about one-third of cases it develops into leukemia, but is a life-threatening condition on its own.

What are myelodysplastic syndromes?

Myelodysplastic syndromes is an umbrella term describing several blood disorders that begin in the bone marrow. People with MDS are unable to produce the proper amount of mature, healthy blood cells in their marrow.

Parts of the body involved in MDS include:

  • Bone marrow, spongy blood-producing tissue inside the bones, where all of the blood in the body is produced
  • White blood cells, produced in the bone marrow and a part of the immune system; a type of cell that plays an important role in fighting infection
  • Red blood cells, produced in the bone marrow, that carry oxygen throughout the body
  • Platelets, produced in bone marrow, that stop excessive bleeding by forming blood clots

In patients diagnosed with myelodsyplastic syndromes, blood cells do not mature, and these abnormal cells are either destroyed or take up space in the marrow cavity that would typically be occupied by normal cells. This lack of healthy blood cell development is what leads to symptoms associated with MDS.

Myelodysplastic syndromes symptoms

Usually there are no early warning signs of myelodysplastic syndromes. In some cases, a routine blood test for some other reason or condition will reveal problems associated with MDS. Some of the most common symptoms of MDS include:

  • Feeling weak, tired
  • Experiencing shortness of breath
  • Pale skin
  • Bruising, bleeding that happens easier than normal
  • Flat skin spots related to bleeding called petechiae

Symptoms of other medical conditions may mirror these. If you are treated for those conditions, or if your symptoms last for several weeks despite medical treatment, you may need further consultation to rule out MDS.

What increases your risk of myelodysplasia?

Things that put you at higher risk for getting MDS are called risk factors. Doctors do not know what causes most cases of myelodysplasia, and there is very little that can be done to avoid being diagnosed. Risk factors for MDS include:

Types of myelodysplastic syndromes

There are several types of myelosdysplasia — all related, yet appearing and acting differently in the body. While MDS are rare diseases overall, some types are more commonly diagnosed including:

  • Refractory cytopenia with multilineage dysplasia: A common type of myelodysplasia, RCMD involves low levels of two types of blood cells — white, red or platelets — and in 10 percent of cases will evolve to leukemia.
  • Refractory cytopenia with unilineage dysplasia: When there are unusually low levels of one type of blood cell — red, white or platelets — and normal levels of the other two the patient is said to have RCUD.
  • Refractory anemia with ring sideroblasts: When there are low levels of red blood cells and normal levels of white cells and platelets, the patient has RARS.
  • Refractory anemia with excess blasts: Divided into RAEB-1 and RAEB-2, this type of myelodysplasia involves low levels at least one blood cell type, and too many abnormal, immature blood cells called blasts in the marrow. Both types of refractory anemia with excess blasts can progress to acute myeloid leukemia, although RAEB-2 is more likely to.
  • Refractory anemia: There are too few red blood cells in the blood and the patient has anemia. The number of white blood cells and platelets is normal.
  • Unclassifiable myelodysplastic syndrome: A type of myelodysplastic syndrome that is unclassifiable, and in which the number of immature cells (blasts) is normal
  • Myelodysplastic syndrome associated with an isolated del(5q) chromosome abnormality: This type of myelodysplasia involves lower than normal levels of red blood cells, leading to anemia and an abnormal change to a chromosome in bone marrow cells.

Myelodysplasic syndromes is group of blood disorders with overlapping features — identifying its different forms is challenging — and since every patient’s disease looks different, getting an accurate diagnosis is important. For these reasons treatment at City of Hope begins with leading-edge diagnostics, performed by world-renowned hematopathologists who are well versed about the entire spectrum of this disease.

Diagnosing myelodysplastic syndromes

Tests used for the most accurate diagnosis of MDS include:

  • Complete blood count: One of the first steps when diagnosing MDS is a complete blood count, to determine where there are potential shortages among the blood cells generated in bone marrow. Blood samples are saved to later be examined under a microscope.
  • Blood chemistry studies: These blood tests look for too much or too little of specific substances (such as vitamin B12 and folate) that may indicate MDS.
  • Bone marrow aspiration, biopsy: Samples of the bone marrow (and bone) are extracted, using a hollow needle, from the back part of the hip bone. These tests are used first to diagnose MDS, but may later be used to test how well a particular therapy is working. Blood and/or bone taken during this test are later examined by a pathologist.
  • Immunocytochemistry: Antibodies are added to blood and bone marrow samples so that they change color. These changes are viewable under special microscopes and help to decipher one type of MDS from another.
  • Cytogenetics: A test that looks at the insides of cells to determine of a defect inside them is driving the MDS
  • Molecular genetic studies: Tests, including an advanced technology called FISH (fluorescent in situ hybridization) used to find genetic defects that may be driving MDS. These tests are often more sensitive than traditional cytogenetic testing.

Not all of these tests are required to make an accurate diagnosis of MDS.

Stem cell transplant is the only treatment that can cure myelodysplastic syndromes. City of Hope is a world leader in setting standards for stem cell transplantation and improving long-term outcomes for both children and adults. Using innovative approaches for blood and bone marrow transplantation to treat MDS has led our Hematologic Malignancies and Stem Cell Transplantation Institute to be considered an industry leader with unrivaled survival rates.

Superior survival outcomes

City of Hope was among the first facilities to build and develop a transplant program which has performed tens of thousands of procedures since 1976. City of Hope has been recognized for superior survival outcomes — one of the only transplant centers in the United States with such an achievement.

Myelodysplastic syndromes treatment options

There are different types of treatment for patients with myelodysplastic syndromes. Treatments for MDS, which may be used alone or in combination, include:

These may be paired with drug and other therapies designed to reduce side effects of treatment.

Clinical trials

In addition to standard therapies, City of Hope's active clinical trials program is testing new treatments for MDS, including identifying new potential targets for new drugs, therapies designed to reduce the risk of graft-versus-host disease in transplant patients, and reducing the risk of MDS developing into leukemia.

Clinical trials may be an option before, during or after standard treatments for MDS.

City of Hope’s renowned physicians and researchers use the latest in technology and innovation to treat cancer, coupled with an enduring belief in providing unparalleled compassionate care.

Hematology/Oncology

Chatchada Karanes, M.D.

Clinical Specialties

  • Hematology/Oncology
Ryotaro Nakamura, M.D.

Clinical Specialties

  • Hematology/Oncology
Margaret R O'Donnell, M.D., F.R.C.P.C.

Clinical Specialties

  • Hematology/Oncology
Eileen P. Smith, M.D.

Clinical Specialties

  • Hematology/Oncology
Anthony S. Stein, M.D.

Clinical Specialties

  • Hematology/Oncology

Research

Clinical trials – research studies that involve volunteer patients – are a crucial component to developing new, more effective treatments that save lives. Many of today’s standard therapies are based on the results of previous trials, some of which were initiated at City of Hope.

Getting treated for myelodysplasia at City of Hope means you are steps away from labs where new treatments are being developed every day. That proximity means you benefit from something unique — bench to bedside treatment. "Bench to bedside" means innovative research we are conducting in our labs is moved quickly to the bedside to treat our patients.

We are at the forefront of new therapies, and have the technology to identify new potential targets for new drugs. And we offer access to a wide variety of clinical trials not always available to the general public. Our latest research is focused on eliminating graft-versus-host disease in transplant patients, and reducing the risk of MDS developing into leukemia.

Browse through some of our clinical trials and research projects.
 

Living with Myelodysplastic Syndromes

When you come to City of Hope, you automatically gain access to an unparalleled array of support services to help you and your family take each step in your MDS journey. We can help with all of these concerns, and more:

  • Managing side effects
  • Pain management
  • Navigating the health care system
  • Your emotional, social and spiritual health
  • Staying healthy and active
  • Healthy cooking and eating
  • Healing arts
  • Caregiver skills
  • Dealing with family, school or work stress

Learn more about these resources at our Living with Cancer or Supportive Care Medicine sites.

Join a community of people who understand what you’re going through

The Leukemia & Lymphoma Society’s Community is an online community of people living with or supporting someone with a blood disorder. Get connected and share your voice to drive change.

 

Myelodysplastic Syndrome

Hear musician George Winston talk about his remarkable experience at City of Hope, where he battled and overcame thyroid cancer, basal cell carcinoma, and myelodysplastic syndrome.