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Myelodysplastic Syndrome

Myelodysplastic Syndrome
Myelodysplastic syndrome (also known as myelodysplasia or MDS) is a set of disorders characterized by abnormalities in myeloid stem cells, which are responsible for making red blood cells, platelets and certain kinds of white blood cells. For people with myelodysplastic syndrome, these stem cells do not mature properly, resulting in less healthy blood cells in the body. This can lead to anemia, weakened immune system, poor blood clotting and other complications.
 
Myelodysplastic syndrome is also sometimes considered a pre-cancer, and patients diagnosed with a MDS disorder may be at greater risk for leukemia .
 
Nationally Ranked Cancer Center
 
As one of a handful of institutes to attain the elite designation of Comprehensive Cancer Center by the National Cancer Institute, City of Hope is acknowledged as a leader in the research and treatment of myelodysplastic syndrome.  With our decades of experience, specialized therapy protocols and extensive program of clinical trials, newly diagnosed or relapsed patients can find a treatment regimen that is tailored to their disease and gives them the best chance for survival. USNews & World Report also named City of Hope as one of the top cancer hospitals in the country for the 11th year.
 
 
  • Refractory anemia
    • Refractory anemia with ring sideroblasts
    • Refractory anemia with excess blasts
  • Refractory cytopenia
    • Refractory cytopenia with multilineage dysplasia
    • Refractory cytopenia with unilineage dysplasia
  • Myelodysplastic syndrome associated with del(5q) abnormality
  • Secondary myelodysplastic syndrome
  • Unclassifiable myelodysplastic syndrome
 
City of Hope has long been a leader in developing promising new combinations of chemotherapy drugs, stem cell transplant procedures and other therapeutic options for patients with myelodysplastic syndrome.
 
  • City of Hope pioneered innovative transplant regimens that have improved the cure rate for patients with myelodysplastic syndrome and other hematologic disorders.
  • City of Hope performs both autologous (using cells from the patient) and allogeneic (using cells from a matched donor) stem cell transplants.
  • For patients who cannot tolerate a standard stem cell transplant regimen, City of Hope physicians can also perform a non-myeloablative stem cell transplant (also known as a “mini transplant”) that can treat the disease without the toxicity or side effects associated with a conventional transplant.
  • Our transplant program is accredited by the Foundation for the Accreditation of Cellular Therapy (FACT), the standard of excellence for blood and bone marrow transplant programs in the United States.
  • In addition to our world-renowned transplant program, City of Hope also offers the broadest range of therapeutic options available for treating myelodysplasia conditions, including chemotherapy, use of growth factors to stimulate blood cell production and specialized transfusions to restore blood cell counts to normal levels.
 
 
In collaboration with other departments and cancer centers, City of Hope’s myelodysplasia program has an active portfolio of myelodysplasia clinical trials studying novel treatments against the cancer, including trials of new chemotherapy and stem cell transplantation regimens that are more effective against the disease and/or less toxic to the patient. Many of these promising therapies are only available to patients being treated at the City of Hope.
 
City of Hope physicians and researchers are particularly involved in new cancer drugs that can more effectively treat myelodysplastic syndrome disorders and stem cell transplant regimens that can minimize risk and severity of potential side effects.
 
If you have been diagnosed with a myelodysplastic syndrome disorder or are looking for a second opinion consultation about your treatment, find out more about becoming a patient or contact us at 800-826-HOPE.
 

Myelodysplasia Team

About Myelodysplastic Syndrome

Myelodysplastic syndrome, also known as myelodysplasia or MDS, is a set of disorders characterized by below-normal counts of mature, healthy blood cells. Additionally, there may also be detectable amounts of abnormal cells in the blood stream.

Myelodysplastic syndrome disorders include:
 
  • Refractory anemia: The person is diagnosed with anemia and there are too few red blood cells in the blood
    • Refractory anemia with ring sideroblasts: In addition to too few red blood cells, there are also abnormal cells containing ring-shaped accumulations of iron around their nuclei.
    • Refractory anemia with excess blasts: In addition to too few red blood cells, there is a buildup of “blast cells” in the bone marrow, putting the patient at greater risk for developing acute myeloid leukemia
  • Refractory cytopenia: Low cell count of any blood cells
    • Refractory cytopenia with multilineage dysplasia: Characterized by shortages at least two kinds of blood cells (red blood cells, white blood cells, platelet cells)
    • Refractory cytopenia with unilineage dysplasia: Characterized by shortage in one kind of blood cells and changes of 10% or more in the other two types
  • Myelodysplastic syndrome associated with del(5q) abnormality: A specific myelodysplasia associated with a genetic abnormality (deletion of genetic material in the patient’s 5th chromosome)
  • Secondary myelodysplastic syndrome: Myelodysplasia that developed as a result of chemical/radiation exposure
    • Treatment-related myelodysplastic syndrome: Myelodysplasia caused by treatment for another disease, including radiation therapy and chemotherapy used to treat another cancer
  • Unclassified myelodysplastic syndrome: Characterized by abnormal counts in any of the blood cell types (red blood cells, white blood cells, platelet cells) but do not fit the criteria for other myelodysplasia disorders
 
Signs and Symptoms of Myelodysplastic Syndrome
 
Because myelodysplasia disorders cause low blood cell counts, symptoms will vary depending on the blood cell types affected; these include:
 
  • Easy bruising or bleeding
  • Fatigue
  • Fever
  • Frequent infections
  • Loss of appetite
  • Petechiae (flat, pinpoint spots under the skin caused by bleeding)
  • Shortness of breath
  • Skin paleness
  • Weakness
 
If your or a loved one are experiencing these symptoms, please contact your doctor for further evaluation, which may include a biopsy for a myelodysplasia diagnosis.
 
Myelodysplastic Syndrome Risk Factors
 
Risk factors associated with myelodysplastic syndrome include the following:
 
  • Age: Myelodysplastic syndrome risk increases with age, with most cases diagnosed in people over 60
  • Chemical exposure: including benzene, herbicides, pesticides, fertilizers, petroleum or diesel-derived chemicals and heavy metals
  • Family history of myedysplastic syndrome disorders
  • Genetic disorder: Those with a chromosome 5q deletion syndrome (loss of genetic material in the long arm of the 5th chromosome) are more likely to develop myelodysplasia
  • Inherited syndromes: Those with certain inheritable syndromes are more likely to develop myelodysplastia. These include Fanconi anemia, Shwahman-Diamond syndrome, Diamond Blackfan anemia, familial platelet disorder and severe congenital neutropenia.
  • Gender: Men are likely to develop myedysplastic syndrome
  • Prior cancer treatment: chemotherapy and radiation therapy, particularly those that affect bone marrow cells, can increase a person’s risk of developing myelodysplasia
  • Radiation exposure
  • Smoking
 
Note that having one or more risk factors does not mean that a person will develop a myelodysplastic syndrome disorder. Most people who have risk factors never develop cancer. Likewise, some people who develop myelodysplasia may not have any risk factors present.

If you suspect that you or a loved one may have a myelodysplastic syndrome disorder, please contact your doctor for a medical examination.

If you have been diagnosed with a myelodysplastic syndrome disorder or are looking for a second opinion consultation about your treatment, find out more about becoming a patient or contact us at 800-826-HOPE.
 
Sources: American Cancer Society and National Cancer Institute
 

How We Diagnose Myelodysplasia

To accurately diagnose myelodysplastic syndrome, the City of Hope care team may need to perform several tests to determine how advanced the disease is. In addition to a routine physical exam and taking a patient’s medical and family history information, City of Hope staff may also perform biopsies and imaging tests.
 
  • Complete blood count – This basic test obtains an accurate count of all the different types of blood cells, which is crucial to diagnosing myelodysplastic syndrome disorders by revealing unusually low cell counts.
  • Blood chemistry test – The blood sample is also checked for certain substances, such as folate or vitamin B12. Abnormal levels can indicate tissue or organ dysfunction as a result of myelodysplasia.
  • Peripheral blood smear – A procedure that checks the blood sample for changes in cell numbers, size, shape or type. It also checks for iron levels in red blood cells.
  • Bone marrow aspirate and biopsy  Bone marrow tissue is extracted and examined by a pathologist under a microscope to determine if there are abnormal cells.
  • Cytogenetic analysis – An examination of chromosomal abnormalities in bone marrow cells. The presence or absence of certain abnormalities can help further classify the disease and guide clinicians to the most effective treatment.
 
Stages of Myelodysplasia
 
To properly plan for treatment, patients with myelodysplastic syndrome are staged in accordance to how advanced the disorder is. This is primarily done by taking a number of factors into consideration, including:
 
  • Type of myelodysplastic disorder
  • Patient’s blood counts and whether the patient needed blood transfusions
  • Percentage of blast cells in the patient’s bone marrow
  • Presence of genetic abnormalities
 
Based on these factors, patients are staged according to their risk level, with higher risk patients requiring more intensive treatments .
 
 
If you have been diagnosed with a myelodysplastic syndrome disorder or are looking for a second opinion consultation about your treatment, find out more about becoming a patient or contact us at 800-826-HOPE.
 

Myelodysplasia Treatment Approaches

Just as every patient is different, we recognize that every case of myelodysplasia is different. What distinguishes City of Hope in the treatment of myelodysplasia patients is seamless continuity of care. From a new diagnosis to treatment with the newest drugs within our extensive program of clinical trials to stem cell transplantation, patients are treated by the same team of doctors who see them through every phase of treatment and recovery.

City of Hope also offers the expertise of geriatric oncologists who specialize in the treatment of older patients and a comprehensive supportive care staff to help promote and maintain their well-being during and after the treatment.

Our patients are provided treatments based on the latest evidence available and up-to-date clinical guidelines. Factors that determine the therapy regimen include:

  • Type and risk level of disease
  • Prior therapies, if any
  • Patient’s characteristics, such as age and overall health
  • Choice of the patient and care provider, if multiple treatment options are available

Based on these factors, the myelodysplasia treatment regimen may include one or more of the following:

Tranfusion and Supportive Drug Therapy

Because myelodysplasia often depletes a patient of healthy blood cells, transfusion may be administered to restore blood cell counts to normal levels.
 
Additionally, growth factors may be administered to stimulate the body to produce more blood cells and antibiotics may be used to help the patient fight off infections.

Stem Cell Transplantation

City of Hope is a leader in the use of stem cell transplantation to treat myelodysplastic syndrome and other blood cancers. Since the program began in 1976, more than 12,000 transplants have been performed and it has been recognized for superior survival outcomes for nine consecutive years—the only transplant center in the United States with such an achievement.
 
Transplants are sometimes performed early in the course of treatment to improve long-term results or it may be utilized when other treatments are not working.
 
In this procedure, a patient undergoes intensive chemotherapy, and sometimes radiation therapy, to destroy the abnormal cells followed by an infusion of new stem cells. The stem cell transplant may be either autologous (extracted from the patient’s own body) or allogeneic (using stem cells taken from another person.) For patients with myelodysplastic syndrome, allogeneic transplants are preferred because an autologous transplant may contain abnormal, myelodysplasia-causing cells.

One known complication of allogeneic transplants is graft versus host disease (GvHD), in which the newly transplanted cells does not recognize the recipient’s body as their own and forms an immune response against it. City of Hope is on the forefront of tackling this side effect and is constantly improving allogeneic transplant protocols to reduce GvHD risk and impact.
 
Nonmyeloablative (Mini) Transplants
 
City of Hope physicians also specialize in “mini” stem cell transplants for patients who cannot tolerate the side effects associated with a standard stem cell transplantation, such as older patients or patients with other medical conditions. These transplants rely less on the heavy doses of chemotherapy and radiation and more on the effects of the graft itself. This novel approach allows patients who are otherwise ineligible, including patients in their 70s, to be treated with this lifesaving procedure.

Chemotherapy

Chemotherapy, or the use of cancer-fighting drugs, may be used in treating myelodysplasia, particularly those that are at risk for developing into leukemia. Chemotherapy is usually given in cycles, with breaks in between to allow patients to recover from side effects.

Standard chemotherapy drugs used for treat myelodysplasia are similar to those used to treat acute myeloid leukemia. The regimen may include one or more of the following:
  • Azacitidine (Vidaza®)
  • Cytarabine (Cytosar-U®)
  • Decitabine (Dacogen®)
  • Fludarabine (Fludara®)
  • Idarubicin (Idamycin®)
  • Lenalidomine (Revlimid®)
  • Thalidomide (Thalomid®)
  • Topotecan (Hycamtin®)
 
Additionally, City of Hope researchers and clinicians are constantly developing new regimens to improve the effectiveness of existing drugs or building new drugs that are more powerful against myelodysplastic syndrome disorders.

Radiation

Radiation therapy uses high-energy X-rays or other types of radiation to kill cancer cells or keep them from growing. Our Helical TomoTherapy System® reduces the unwanted exposure of normal tissues and reduces potential complications. The system combines radiation delivery with real-time imaging, allowing doctors to deliver a higher dose of radiation with greater precision. This significantly improves outcomes and reduces side effects compared to traditional whole-body irradiation, which unnecessarily exposes healthy tissues.

How to Become a Patient

If you have been diagnosed with a myelodysplastic syndrome disorder or are looking for a second opinion consultation about your treatment, find out more about  becoming a patient or contact us at 800-826-HOPE.

Myelodysplasia Research/Clinical Trials

City of Hope is a recognized leader in myelodysplasia research with more than three decades of experience. Our research projects have been funded by the National Cancer Institute (NCI) and many other research-based organizations, and our scientists collaborate with other leading research institutions to develop tomorrow’s breakthroughs today.
 
  • City of Hope is studying methods to minimize risk and severity of graft-versus-host disease (GvHD) for myelodysplasia patients who had undergone an allogeneic stem cell transplant, including use of immunosuppressants and developing a better process of matching donors to recipients.
  • Developing a safe and effective stem cell transplantation protocol for HIV-positive patients with myelodysplastic syndrome.
  • Investigating the biological mechanisms that transform myelodysplasia into leukemia and how those processes can be halted.
  • Looking into ways to minimize risk of developing secondary myelodysplastic syndrome resulting from current cancer treatments.
 
Patients and physicians can access Clinical Trials On-Line to find out about myelodysplasia clinical trials that are currently being conducted at City of Hope or visit our clinical trials information page.
 
 
If you have been diagnosed with a myelodysplastic syndrome disorder or are looking for a second opinion consultation about your treatment, find out more about becoming a patient or contact us at 800-826-HOPE.
 
 

Living with Myelodsyplasia

In addition to curative treatments, City of Hope myelodysplasia patients can have also access to the broad range of services offered by our Department of Supportive Care Medicine. The department’s staff of professionals can give expert assistance in navigating a complex hospital system as well as helping patients and loved ones with a variety of wellness issues including:
 
  • Managing side effects
  • Pain management
  • Coping and maintaining emotional/social/spiritual well-being
  • Staying healthy during/after treatment
  • Guidance on eating well and cooking smart
  • Healing arts
  • Being active
  • Building caregivers’ skills
  • Sexual health and fertility
  • Body image
 
 
The Sheri & Les Biller Patient and Family Resource Center is the heart of the Department of Supportive Care Medicine, integrating City of Hope's support services under one umbrella. The Biller Resource Center provides a warm and welcoming space where patients, families and caregivers can access the resources, education and support they need to strengthen and empower themselves, before, during and after treatment.

Our team of supportive care experts includes clinical social workers; pain and palliative care physicians and nurses; psychologists, psychiatrists; patient navigators; health educators; spiritual care chaplains; child life specialists and more. The Biller Resource Center staff may be reached at 626-256-4673 ext. 32273 (3CARE).

Additional Myelodysplasia Resources
 
 
 
If you have been diagnosed with a myelodysplastic syndrome disorder or are looking for a second opinion consultation about your treatment, find out more about becoming a patient or contact us at 800-826-HOPE.
 

Support This Program

It takes the help of a lot of caring people to make hope a reality for our patients. City of Hope was founded by individuals' philanthropic efforts 100 years ago. Their efforts − and those of our supporters today − have built the foundation for the care we provide and the research we conduct. It enables us to strive for new breakthroughs and better therapies − helping more people enjoy longer, better lives.


For more information on supporting this specific program, please contact us below.

Tina Pakfar, Ph.D.
Vice President
Direct: 213-241-7216
Email: tpakfar@coh.org

 
 

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Physicians can choose a number of options to refer a patient:

  • Call 800-826-HOPE (4673) to speak with a patient referral specialist.
  • Fax the patient face sheet to 626-301-8432
  • Complete an online callback request form
 
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