Expert Videos

Module: Understanding Myelodysplastic Syndromes

What is MDS?
MDS expert, Dr Stephen Nimer, provides an overview of myelodysplastic syndromes (MDS). MDS is a blood disease in which the bone marrow fails to produce enough of one or more types of healthy blood cells (red blood cells, white blood cells, and platelets). Doctors consider MDS a form of blood cancer and in some patients it can turn into acute myeloid leukemia (AML) if it gets worse.
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What causes MDS?
MDS expert, Dr Stephen Nimer, explains that with a few exceptions, the exact causes of myelodysplastic syndromes (MDS) are unknown. Some factors may increase the risk of developing MDS, including: certain genetic changes, previous chemotherapy, exposure to high dose radiation, and long-term exposure to certain chemicals. MDS happens when something affects the bone marrow cells, changing the DNA’s instructions for making blood cells, but doctors don’t know exactly what affects the cells to cause MDS in a particular person at a particular time.
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What are the symptoms of MDS?
MDS expert, Dr Stephen Nimer, describes the variety of symptoms that may be associated with myelodysplastic syndromes (MDS). Symptoms vary and depend on which blood cells are low. A low red cell count (anemia) may lead to shortness of breath or fatigue. A low platelet count (thrombocyctopenia) may cause easy bruising or bleeding. A low white cell count (neutropenia) may lead to frequent infections and fever. Some people with MDS have no symptoms, and are diagnosed by chance after a routine blood test.
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What are the risk factors for MDS?
MDS expert, Dr Stephen Nimer, provides an overview of the factors that may increase the risk of developing myelodysplastic syndromes (MDS), including: age, previous chemotherapy, high doses of radiation, and long-term exposure to certain chemicals. In rare cases, genetic changes may increase a person’s risk of developing MDS.
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Can MDS be prevented?
MDS expert, Dr Stephen Nimer, explains that there is no sure way to prevent myelodysplastic syndromes (MDS). It is a very rare disease and currently there is no widely recommended screening test. Doctors are working to learn more about MDS and research is continuing to identify genetic abnormalities in MDS patients and possible treatments for prevention.
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Is MDS hereditary? Does genetics play a role?
MDS expert, Dr Stephen Nimer, discusses hereditary forms of myelodysplastic syndromes (MDS) and provides an overview of the role that genetics and epigenetics play in the development of the disease.
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What are the types of MDS?
MDS expert, Dr Stephen Nimer, provides an overview of the different types of myelodysplastic syndromes (MDS), including: unilineage dysplasia, refractory anemia with excess blasts, chronic myelomonocytic leukemia, 5q- syndrome, and del(5q). There are about 10 different subtypes of MDS, depending on unilineage or multilineage dysplasia, the presence or absence of ringed sideroblasts, and the percentage of blasts.
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How is MDS classified?
MDS expert, Dr Stephen Nimer, provides an overview of how myelodysplastic syndromes (MDS) are classified. He describes the International Prognostic Scoring System (IPSS), and the revised International Prognostic Scoring System (IPSS-R), and the World Health Organization (WHO) classification system. Each is described in the video in detail. The classifications help doctors plan treatment and predict a patient’s prognosis.
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How serious a cancer is MDS? What is the prognosis for MDS?
MDS expert, Dr Stephen Nimer, describes the prognosis of myelodysplastic syndromes (MDS). MDS is considered a type of cancer and prognosis varies dramatically depending on many factors, as described in the video in detail. Some patients may have less than 1 year to live from the time of their diagnosis, and others may live 10 or 15 years, or more. In some cases, MDS can progress to acute myeloid leukemia (AML) if it gets worse.
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Module: Understanding MDS-related Anemia

What is MDS-related anemia? What causes it?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, describe what myelodysplastic syndrome (MDS) is and how it causes anemia (low red blood cell production). They also discuss how often MDS-related anemia occurs and that it can range from mild to severe. Up to three-quarters of people with MDS have anemia at some time during the disease.
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What is a complete blood count? How does it show if I have anemia?
MDS-related anemia experts, Dr Rafael Bejar and Dr Casey O’Connell, explain how a blood test known as a complete blood count (CBC) can tell patients whether they have anemia. Doctors can identify anemia based on any of three values in your CBC. These are your red blood cell (RBC) count, hemoglobin (HGB) and hematocrit (HCT). The patient and doctor will decide together which one of these values to track over time.
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What are the symptoms of MDS-related anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, provide an overview of the symptoms of MDS-related anemia. The symptoms of anemia are not necessarily specific to MDS. In general, the most common symptoms include fatigue, shortness of breath, and the need for rest following physical exertion. Other symptoms include being pale, having a more rapid heart rate, and in severe cases having low blood pressure.
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What makes people with MDS more likely to have anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, describe what makes people with MDS more likely to develop anemia. Some types of MDS are more commonly associated with anemia. In addition, patients with higher-risk MDS are also more likely to have anemia, or more severe forms of anemia. 
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What happens in MDS-related anemia over time?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss what happens to MDS-related anemia over time. They explain that it tends to worsen over time, which may indicate that the underlying MDS is advancing in stage and might need a repeat bone marrow biopsy to assess prognosis (outlook).
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What’s the prognosis for MDS-related anemia? How is prognosis determined?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, provide an overview of how prognosis (outlook) is determined in MDS. Risk scores are used to predict outlook and decide on treatment options. Your doctor will calculate your risk score based on which blood counts are low, your number of blasts, and any gene changes they see. They also describe the International Prognostic Scoring System (IPSS) and the Revised International Prognostic Scoring System (IPSS-R) tools that categorize risk, ranging from very low risk to very high risk. Lastly, the experts explain the various meanings of the term “risk” as it relates to MDS: risk of the MDS developing into acute myeloid leukemia (AML), as well as risk of overall survival (life expectancy with MDS).
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Which questions should I ask my doctor about my MDS-related anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss questions that patients with MDS-related anemia may want to ask their doctors. They recommend asking about the severity of their anemia, what their hematocrit or hemoglobin number is, and at what point treatment or transfusions should be started. They also recommend questions to ask after a bone marrow biopsy has been performed, such as whether the bone marrow has changed since the last biopsy, whether there are new findings in the blood cell counts, and if there are any new chromosomal abnormalities.
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How is MDS-related anemia diagnosed?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, explain how MDS-related anemia is diagnosed. Doctors will first do tests to determine if the anemia is due to other treatable causes that are outside of the bone marrow – such as nutritional deficiencies, certain types of bleeding, and kidney dysfunction. If other treatable causes are ruled out, then the next step is a procedure called a bone marrow biopsy. The biopsy sample will be reviewed under a microscope for abnormal cells and genetically tested to gain insight into the bone marrow in order to make a diagnosis.
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How is MDS-related anemia screened and monitored?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, explain how MDS-related anemia is screened and monitored. They explain that once a patient is identified as having anemia and has gone through the process of being diagnosed with MDS, individualized therapy will begin based on the findings of each patient. For example, patients with mild anemia may receive no intervention and might only be monitored once every few months, whereas patients with severe anemia may require blood transfusions regularly and need their blood counts checked more often.
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Which other conditions have symptoms similar to MDS-related anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, talk about other conditions that mimic the symptoms of MDS-related anemia. Patients with chronic lung disease and congestive heart failure can experience the same symptoms as those with MDS-related anemia, such as fatigue and shortness of breath with exertion. In these conditions, the anemia is unrelated to bone marrow dysfunction.
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If I have MDS-related anemia, what should I watch out for in daily life?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss the signs that patients should watch out for if they have MDS-related anemia. Patients need to let their healthcare team know right away if they experience any worsening of symptoms, such as a profound shortness of breath, lightheadedness, severe fatigue, and any overt bleeding.
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Which specific diagnosis questions should I ask my doctor about my MDS?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss specific diagnosis questions that patients with MDS should ask their doctors. They recommend asking their doctor about their bone marrow findings, if there were any chromosomal abnormalities, what percentage of leukemia-like blast cells were in the bone marrow, and what kind of MDS subtype they have. Ultimately these all make a difference as to how the condition gets treated.
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How does acute myeloid leukemia (AML) relate to MDS?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss how acute myeloid leukemia (AML) relates to MDS. About 30 percent of people with MDS develop a life-threatening blood cancer called AML. The risk of AML depends on the type of MDS you have and other factors. To help confirm a diagnosis of AML, a bone marrow biopsy is performed to capture all the changes (including genetic) that led to the condition.
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Why is it important to understand the causes of unexplained anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell, discuss the importance of understanding the causes of unexplained anemia. It is important for prognosis to understand what is occurring in the bone marrow if you have anemia that is unexplainable by any other cause. A bone marrow biopsy can determine what subtype of MDS a patient has and what treatment they will need, even if the anemia is unexplained.
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Module: Diagnosis of MDS

How is MDS diagnosed?
MDS experts, Dr Alan List and Dr David Sallman, describe how they diagnose myelodysplastic syndromes (MDS), including the symptoms that allude to the disease and the laboratory tests that confirm the diagnosis (blood cell counts, blood cell examination, and bone marrow tests). They also discuss cytogenetic tests that look for certain changes to chromosomes, and tests for specific gene mutations.
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What is involved in screening for MDS?
MDS experts, Dr Alan List and Dr David Sallman, discuss that there is currently no standardized screening test for myelodysplastic syndromes (MDS). Patients who have persistent low blood counts (cytopenias) might be referred to a hematologist to test for MDS. Patients who are at risk should be followed closely for any unusual changes or progression.
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What is genetic testing for MDS?
MDS experts, Dr Alan List and Dr David Sallman, describe the genetic tests that are used for myelodysplastic syndromes (MDS), and provide an overview of cytogenetics, fluorescent in situ hybridization (FISH), mutation testing, and next generation sequencing. These tests provide important MDS diagnostic and prognostic information.
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What are the clinical features and symptoms of MDS?
MDS experts, Dr Alan List and Dr David Sallman, describe the clinical features and symptoms of myelodysplastic syndromes (MDS). Symptoms depend on which blood cell counts are low. Patients with low white cell counts (neutropenia) may have frequent infections and fever. Patients with low red cell counts (anemia) may have shortness of breath or fatigue. Patients with low platelet counts (thrombocyctopenia) may bleed or bruise easily. There is a risk that MDS can turn into leukemia if it gets worse.
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What are the overlap syndromes that have features of MDS?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of the MDS overlap syndromes that have features similar to myelodysplastic syndromes (MDS). They describe overlap syndromes such as chronic myelomonocytic leukemia, juvenile myelomonocytic leukemia, atypical chronic myeloid leukemia, and others.
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What is the prognostic classification of MDS?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of the prognostic classification systems for myelodysplastic syndromes (MDS) that are used to predict outlook and decide on treatment options. The International Prognostic Scoring System (IPSS) and the Revised International Prognostic Scoring System (IPSS-R) help determine if a patient has a lower risk or a higher risk of their MDS progressing into acute myeloid leukemia, and help doctors plan treatment.
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Module: Understanding Genetic Mutations in MDS

What is a genetic mutation, a biomarker, and cytogenetic analysis in MDS?
Rafael Bejar, MD, PhD, Director of the MDS Center of Excellence at the Moores Cancer Center of the University of San Diego, explains what mutations in individual genes mean for the outlook with myelodysplastic syndromes (MDS). He also discusses the use of biomarker testing to monitor and predict MDS disease course and the importance of cytogenetic analysis to look for chromosomal abnormalities affecting MDS prognosis and treatment.
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Why is understanding genetic mutations and cytogenetics in MDS important?
Valeria Santini, MD, Associate Professor of Hematology at the  University of Florence, Italy, describes how genetic mutations and cytogenetics give doctors insight into how MDS is likely to progress and also serve as potential targets for targeted MDS therapy. Testing for mutations in specific genes and looking for changes in the overall karyotype, or genetic profile, are both important to learn how MDS may evolve with time and treatment and can help doctors choose the most likely effective therapies.
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Is an MDS-related genetic mutation something I was born with or something that occurred later on?
Dr. Rafael Bejar, MDS expert from the University of San Diego Moores Cancer Center, discusses somatic mutations and germline mutations in myelodysplastic syndromes (MDS). Somatic mutations develop from changes in genes over a lifetime. Germline mutations, passed down from parents, may predispose someone to develop MDS. Dr. Bejar explains how common each of these types is in MDS and what their presence may mean for prognosis and MDS treatment.
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How do my genetic mutations influence MDS risk?
Prof. Valeria Santini, MD, an expert on MDS from the University of Florence, describes how the specific genetic mutations you have can tell your doctor how likely your MDS is to transform into leukemia and how the disease will probably respond to treatment. Along with platelet count and white blood cell count, gene mutations and chromosome abnormalities help your doctor understand whether your MDS is high or low risk and to make treatment decisions.
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How does genetic testing help in MDS diagnosis?
Rafael Bejar, MD, PhD, of the University of California, San Diego, discusses how the presence of certain genetic mutations, including multiple mutations, reveal MDS type. This can also help predict prognosis. The absence of MDS-related mutations can also show that MDS is not present and alert doctors to diagnose a different disease.
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How is genetic testing for MDS carried out?
Dr. Rafael Bejar, Director of the MDS Center of Excellence at the University of California, San Diego, explains the importance of testing for mutations in individual genes as well as karyotype testing, also called cytogenetic testing. A sample of bone marrow is the source for tissue to be tested in both these forms of genetic testing in myelodysplastic syndromes (MDS).
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Which genetic mutations and cytogenetic changes have a more favorable response to MDS treatment?
Prof. Valeria Santini, an expert on MDS from the University of Florence, discusses what we currently know about genetic mutations and cytogenetic changes associated with better myelodysplastic syndromes (MDS) treatment outcomes. For example, changes in chromosome 5 (some 5q deletions) can indicate a favorable response to treatment with lenalidomide. A mutation in the gene SF3B1 can also indicate a good prognosis. Prof. Santini discusses the need for transfusion and the role of multiple mutations.
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Which genetic mutations and cytogenetic changes have a less favorable response to MDS treatment?
Rafael Bejar, MD, PhD, of the MDS Center of Excellence at the University of California San Diego, discusses cytogenetic changes such as a deletion or partial deletion of chromosome 7 which are linked to poorer outcomes with myelodysplastic syndromes (MDS). He also discusses how a mutation in the gene TP53 or multiple chromosomal abnormalities indicate less favorable responses to MDS treatment.
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Which MDS genetic mutations are most likely to cause relapse?
Valeria Santini, MD, an expert on MDS and Associate Professor of Hematology at the University of Florence, describes how some mutations, such as a mutation on the TP53 gene, are linked to a greater likelihood of relapse after MDS treatment. She discusses the effect of having several mutations and how mutations arising during the course of myelodysplastic syndromes (MDS) can lead to treatment resistance.
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What questions should I ask my doctor about MDS genetic testing?
Rafael Bejar, MD, PhD, Director of the MDS Center of Excellence at the University of California, San Diego, suggests asking your doctor about the availability of mutation testing and which specific tests are available. Dr. Bejar also discusses how to ask about unrelated DNA variants, hereditary mutations associated with development of myelodysplastic syndromes (MDS), and mutations acquired during or after treatment that can indicate a better or worse MDS prognosis.
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Module: Management and Treatment of MDS

What are the treatment options for MDS?
MDS experts, Dr Alan List and Dr David Sallman, describe the common treatment options for myelodysplastic syndromes (MDS). The treatments discussed are: supportive care, therapies that help improve blood counts, disease-modifying treatment, high dose chemotherapy, and blood and marrow transplant (BMT). You might have some or all of these treatments, depending on your MDS type and risk category.
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How is lower-risk MDS treated?
MDS experts, Dr Alan List and Dr David Sallman, explain that the goals of therapy for patients with lower-risk myelodysplastic syndromes (MDS) are to improve blood counts and alleviate symptoms. The treatment options for lower-risk MDS discussed are: recombinant erythropoietin, lenalidomide, immunosuppressive therapy, and hypomethylating agents. They also discuss watchful waiting if a patient with lower-risk MDS has no symptoms or doesn’t have very low blood cell counts.
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How is higher-risk MDS treated?
MDS experts, Dr Alan List and Dr David Sallman, explain that the goals of therapy for patients with higher-risk myelodysplastic syndromes (MDS) are to improve symptoms, decrease the risk of leukemia, and improve survival. The primary treatment options for higher-risk MDS discussed are: hypomethylating agents (azacitidine and decitabine) and allogeneic stem cell transplant.
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What is supportive care for MDS?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of supportive care treatments that are used to help treat or prevent symptoms or complications of myelodysplastic syndromes (MDS). They discuss iron chelation therapy (used to treat iron build up from blood transfusions) and myeloid growth factors (also called blood and marrow transplant, or BMT).
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Are vitamin supplements beneficial for MDS treatment?
MDS experts, Dr Alan List and Dr David Sallman, describe the role of vitamin supplementation in patients with myelodysplastic syndromes (MDS). They discuss the importance of eating a healthy diet, and the importance of avoiding iron supplements or iron-containing medications in order to prevent iron overload. Work with your health care team to determine which vitamins and supplements you can use safely.
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What are erythropoietin-stimulating agents (ESAs)?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of the use of erythropoietin-stimulating agents (ESAs) for myelodysplastic syndromes (MDS). ESAs stimulate the bone marrow to help make red blood cells. They describe how ESAs are given, how often they are used, and how long the benefits typically last.
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What is cytotoxic chemotherapy and when is it used for MDS?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of cytotoxic chemotherapy for the treatment of myelodysplastic syndromes (MDS). This treatment uses chemotherapy to kill the abnormal cells in your bone marrow. Higher-risk MDS can potentially progress to acute myeloid leukemia (AML), so some patients with higher-risk MDS may receive the same chemotherapy treatment as AML patients.
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What is lenalidomide and when is it used for MDS?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of the use of lenalidomide for myelodysplastic syndromes (MDS). This treatment is highly effective in patients with the chromosome 5q deletion type of MDS. It may also be used in lower-risk MDS patients. They also discuss the potential side effects of lenalidomide.
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What are hypomethylating agents and when are they used for MDS?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of hypomethylating agents for the treatment of myelodysplastic syndromes (MDS). These medications work by turning on genes to kill the cancer cells. Examples discussed are azacitidine and decitabine. The doctors describe how these drugs are given, how they work, and potential side effects.
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How long will MDS treatment be given?
MDS experts, Dr Alan List and Dr David Sallman, describe the treatment cycle for azacitidine, a medication used for myelodysplastic syndromes (MDS). Treatment may be continued for as long as the patient continues to benefit. It is crucial that treatment decisions be made in consultation with your doctor, based on your personal situation.
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What is immunosuppressive therapy and when is it used for MDS?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of immunosuppressive therapy for myelodysplastic syndromes (MDS). Immunosuppressive medications work by suppressing the immune attack on the bone marrow. Examples discussed are cyclosporine and antithymocyte globulin (ATG). The doctors describe how these drugs are given, how they work, and potential side effects.
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What other options are there if first-line MDS treatment doesn’t work?
MDS experts, Dr Alan List and Dr David Sallman, discuss treatment options and sequences that might be used if the first-line treatment for myelodysplastic syndromes (MDS) does not work, or stops working. These decisions are personalized for each patient, so it is important to talk to your doctor about trying another drug, or a combination of drugs, or about possible clinical trials.
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Module: Managing and Treating MDS-related Anemia

What are the treatment options for MDS-related anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss typical treatment options for MDS-related anemia. In this video, the treatment and management options discussed are: surveillance and monitoring, erythropoiesis stimulating agents (ESAs), lenalidomide, ESAs in combination with lenalidomide, and an immune-type therapy called anti-thymocyte globulin (ATG).
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What are the goals of treatment for MDS-related anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss the goals of treatment for MDS-related anemia. The first goal is to relieve symptoms in order to help the patient feel better. The second goal is to reduce the number of blood transfusions a patient needs, since frequent transfusions can cause a buildup of extra iron in the blood, may have other potential adverse effects, and can be very time consuming.
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How is higher-risk MDS-related anemia treated?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell describe how higher-risk MDS-related anemia is treated. They discuss the use of hypomethylating agents (HMAs), such as azacitidine and decitabine, for higher risk MDS. These therapies are effective at improving low blood cell counts in about fifty percent of patients. They also explain how patients might be assessed as candidates for a stem cell transplant.
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What is “refractory anemia” and “primary anemia”? Are these terms still in use?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell address what is meant by “refractory anemia” and “primary anemia” and explain that these terms are becoming more and more outdated. In the past, “refractory anemia” was used to refer to an anemia that didn’t respond to any known treatment at the time. Nowadays, with MDS being better understood, refractory anemia refers to anemia that a patient has that is otherwise unexplained but may be due to MDS.
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When do people with MDS-related anemia need blood transfusions?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss how they determine when blood transfusions are needed for MDS-related anemia. They explain that it is a very individualized decision, depending on the hemoglobin levels and symptoms of each patient. Patients with hemoglobin levels in the eight to nine range might be considered for a blood transfusion to see if they feel better. Patients whose hemoglobin levels are below the seven range will be considered for a blood transfusion, even if they don’t show any symptoms. The experts mention that some patients say they don’t feel any symptoms of tiredness or fatigue, but after a blood transfusion they feel a noticeable improvement.
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How often could I need a blood transfusion for MDS-related anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell describe how often a patient might need a blood transfusion for MDS-related anemia. Generally, two units of packed red blood cells (RBCs) can last a patient for four weeks. Unfortunately, over time there are factors that can reduce the success or longevity of blood transfusions in some patients. For example, some patients can develop antibodies to the transfused RBCs, thus requiring blood transfusions every two weeks instead of four. The experts also address the opposite case, where some patients with only mild anemia can function on a single unit of blood and may not need a transfusion for a couple of months.
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Are blood transfusions safe? Are there risks?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss the safety of blood transfusions for MDS-related anemia. They explain that blood transfusions are generally very safe because the donor blood is carefully tested for any potential disease. The main concern that doctors have is the risk that a patient may accumulate too much iron in the blood (“iron overload”) after multiple blood transfusions. They also talk about other risks that are extremely rare, including allergic reactions to donor blood, or low-level mismatch that reduces the effectiveness of the red blood cells being given.
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What is iron overload, and how it is treated?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell describe what iron overload is and how it treated. They explain that frequent blood transfusions can cause extra iron to build up in the body over time, leading to a condition called iron overload. The extra iron may harm your liver and other organs. A ferritin blood test is used to monitor how much iron is accumulating in the body. If ferritin levels exceed 1000, chelation therapy will be used to remove extra iron, and this treatment can be quite effective over long periods of time. They also discuss some of the potential side effects of chelation therapy.
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Can my bone marrow return to normal and produce its own red blood cells?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss whether a patient’s bone marrow can return to normal and produce its own red blood cells. They describe a variety of treatments that can improve the production of red blood cells (RBCs) by the patient’s own bone marrow. They discuss erythropoiesis stimulating agents (ESAs) which help the bone marrow make more red blood cells, and azacitidine and decitabine which knock-down abnormal cells, thereby allowing normal cells in bone marrow to recover in number.
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What new treatments are in development for MDS-related anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell talk about new treatments that are in development for MDS-related anemia. They discuss a new drug called luspatercept which helps improve anemia, especially among patients with sideroblastic anemia. This drug is undergoing clinical trials and awaiting FDA approval in the United States.
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Are there clinical trials for MDS-related anemia? What does the future hold?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell talk about clinical trials for new MDS treatments. The experts describe this is an exciting time for MDS, with several ongoing trials focused on finding more effective treatments, or easier ways for patients to take treatments. They provide an overview of new drugs that will hopefully prove successful and receive FDA approval for MDS. To learn more about clinical trials and how to participate in one, please talk to your doctor.
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What treatment questions should I ask my doctor about my MDS?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell discuss what treatment questions patients with MDS should ask their doctors. They explain that questions will vary based on the risk stratification of each patient. For example, a low risk patient with only anemia should ask about their erythropoietin level. Patients should ask if their disease is getting worse over time, or if they need another bone marrow biopsy. With each bone marrow biopsy, patients should ask about their blast count, and about any genetic changes (i.e., cytogenetic and molecular). Patients might also want to ask about clinical trials that best suit their individual case with MDS.
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When is a blood and marrow transplant (stem cell transplant) used for MDS-related anemia?
MDS experts, Dr Rafael Bejar and Dr Casey O’Connell describe when a blood and marrow (stem cell transplant) is used for MDS-related anemia. Although stem cell transplantation represents the only cure for MDS, it is not a guarantee and the process is associated with a lot of risks. The decision to proceed with a transplant is a complicated one involving several considerations, including age, MDS risk category, and presence of co-existing diseases. Stem cell transplantation is often considered for people with high risk disease. On average, lower risk MDS patients will likely do better living with their disease and taking non-transplant treatments, rather than undergoing a stem cell transplant.
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Module: Mutation-Driven Therapy in MDS

How does my genetic mutation profile impact the treatment of my MDS?
Valeria Santini, MD, an expert in MDS from the University of Florence, discusses how your individual genetic mutation profile provides essential information on the prognosis for your MDS as well as specific treatments. She explains what a complex karyotype is, its role in myelodysplastic syndromes (MDS) progression, and how cytogenetic testing and the type and number of genetic mutations are important in treatment planning. The mutation profile can help doctors choose therapies targeted to the MDS progenitor cells.
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What are mutation-driven MDS treatments?
MDS expert Rafael Bejar, MD, PhD, explains how mutation-driven treatments for myelodysplastic syndromes (MDS) target changes on specific genes such as IDH1 or IDH2. Other examples include the use of lenalidomide, chromosome deletions in 5q as potential drivers for treatment, and treatments targeted to mutations in the gene FLT3 are present.
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What are the goals of mutation-driven MDS treatments?
Prof. Valeria Santini, an expert on MDS from the University of Florence, explains that mutation-driven treatments aim to affect MDS progression by targeting chromosomal alterations or gene mutations present in MDS. She also describes how the presence of additional mutations can affect the goal of slowing progression.
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How does my MDS genetic mutation permit personalized treatment decisions?
Rafael Bejar, MD, PhD, Director of the MDS Center of Excellence at the Moores Cancer Center of the University of San Diego, explains how testing for genetic mutations and chromosomal abnormalities can help your doctor personalize your MDS therapy. For example, risk-based therapy based on a 5q deletion can lead to therapy with lenalidomide and mutations on the IDH genes can lead to treatment with specific chemotherapy drugs.
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What questions should I ask my doctor about mutation-driven MDS treatments?
MDS expert Valeria Santini, MD, of the University of Florence, advises patients to ask their doctor which genetic tests are available for suspected myelodysplastic syndromes (MDS). Karyotype testing for chromosomal abnormalities in MDS is essential, as is genetic testing that can find a wide array of mutations, including less common ones. Patients should ask about testing to look for new mutations during and after treatment so treatment can be adjusted if necessary.
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What are the challenges to mutation-driven MDS treatment?
Rafael Bejar, MD, PhD, head of the MDS Center of Excellence at the University of California, San Diego, explains how the small number of mutation-driven MDS treatments remains a challenge. These treatments include targeted therapy for mutations in the genes IDH1 and IDH2, as well as luspatercept for people with a mutation in SF3B1. Learning about resistance mutations is also important for improving treatment response and developing additional mutation-driven MDS therapies.
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When should genetic testing for MDS be done?
Valeria Santini, MD, an expert on MDS from the University of Florence, describes karyotype analysis (cytogenetic testing) done when MDS is suspected, as well as how often it should be repeated. Testing for gene mutations and cytogenetic alterations is important throughout the course of treatment as a key to prognosis and targeted therapy.
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How do MDS genetic mutations influence decisions for stem cell transplant?
MDS expert Rafael Bejar, MD, PhD, shares how the type of genetic mutation present in MDS can make an allogeneic stem cell transplant, or bone marrow transplant, more desirable – for example, in high-risk myelodysplastic syndromes (MDS). Knowing which genetic mutations are present can also help doctors and patients decide if alternatives such as experimental therapies or myelodysplastic syndromes (MDS) are better options if the mutation makes relapse more likely.
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Module: Blood and Marrow Transplantation in MDS

What is a blood and marrow transplant (BMT)?
MDS experts, Dr Alan List and Dr David Sallman, describe what blood and marrow transplantation (BMT) is, and when it is used for myelodysplastic syndromes (MDS). Doctors also call BMT a stem cell transplant or hematopoietic stem cell transplant. BMT is a treatment that replaces your diseased stem cells with healthy ones. BMT is the only treatment that may cure MDS. The doctors explain how it works and who is eligible for BMT. They also describe allogeneic transplant (using cells from another person) and autologous transplant (using your own cells).
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Who can be a blood and marrow transplant donor?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of who can be a donor for blood and marrow transplantation (BMT) for myelodysplastic syndromes (MDS). A donor can be a sibling, a child, or someone from the bone marrow registry who is not related to you. A matching donor is found using a test called HLA typing. HLA-matched bone marrow is less likely to cause a potential side effect called graft versus host disease (GVHD).
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How is a blood and marrow transplant done? What should I expect?
MDS experts, Dr Alan List and Dr David Sallman, describe the process that a patient will go through when receiving a blood and marrow transplant (BMT) for myelodysplastic syndromes (MDS).The procedure takes place in hospital and begins with chemotherapy. After a few days, the new stem cells are given to the patient via central line. Once in the body, the new cells will circulate and in time begin to grow and make new, healthy blood cells. The doctors also discuss potential side effects, as well as the monitoring and follow-up care that is required.
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What is Graft-Versus-Host Disease (GVHD) and why does it happen?
MDS experts, Dr Alan List and Dr David Sallman, provide an overview of graft-versus-host disease (GVHD), which might happen after an allogeneic transplant (a transplant that uses stem cells from a donor). In GVHD, the donor cells that make up your new immune system see your body’s cells as foreign and start to attack them. They also discuss acute GVHD and chronic GVHD, as well as medications to prevent or treat the condition.
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How effective is blood and marrow transplantation (BMT)?
MDS experts, Dr Alan List and Dr David Sallman, discuss the effectiveness of blood and marrow transplantation (BMT) for myelodysplastic syndromes (MDS). BMT may cure MDS in some patients, while for others remission may be the best result. Talk to your doctor about whether BMT is an option for you.
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Is blood and marrow transplantation (BMT) safe?
MDS experts, Dr Alan List and Dr David Sallman, discuss the safety of blood and marrow transplantation (BMT) for myelodysplastic syndromes (MDS). Outcomes have improved in recent years, and more patients can now be considered for BMT. The success of the transplant and the severity of side effects vary from person to person, and can be difficult to predict. Talk to your doctor about whether BMT is an option for you.
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This educational activity has been developed by the Myelodysplastic Syndromes Foundation, Inc. and Mechanisms in Medicine Inc.

This activity is supported by an educational grant from Acceleron Pharma, Bristol-Myers Squibb, Celgene Corporation, Jazz Pharmaceuticals, Novartis Pharmaceuticals, and Takeda Oncology.

This website is part of the Animated Patient™ series developed by Mechanisms in Medicine Inc., to provide highly visual formats of learning for patients to improve their understanding, make informed decisions, and partner with their healthcare professionals for optimal outcomes.