Expert Videos

Module 1: Understanding MPNs

What are myeloproliferative neoplasms (MPNs)?

What are myeloproliferative neoplasms (MPNs)?

Dr. Andrew Kuykendall of Moffitt Cancer Center explains that myeloproliferative neoplasms (MPNs) are a group of chronic blood cancers caused by genetic changes that lead to making too many blood cells. He describes the three "classic" types of MPNs: essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Dr. Kuykendall notes that many patients can live well with proper monitoring and care, depending on their specific diagnosis and risk level.

Why and how did my MPN arise?

Why and how did my MPN arise?

In this video, Dr. Jyoti Nangalia explains that myeloproliferative neoplasms (MPNs) develop when a mutation occurs in a blood stem cell, causing it to produce too many blood cells. Most cases are linked to one of three key gene mutations: JAK2, CALR, or MPL. These mutations can appear early in life and grow slowly over decades, often without symptoms at first. Dr. Nangalia also discusses how a combination of genetics, environment, and possibly lifestyle may influence why these mutations occur or progress in some individuals but not others.

How are MPNs diagnosed?

How are MPNs diagnosed?

In this video, Dr. Andrew Kuykendall provides an overview of how myeloproliferative neoplasms (MPNs) are diagnosed. He explains that the process often begins with a routine blood test that shows unusually high levels of red blood cells, white blood cells, or platelets. If an MPN is suspected, further testing is done to look for common genetic mutations such as JAK2, CALR, or MPL, which help confirm the diagnosis. A bone marrow biopsy is also recommended to better understand the disease and identify its specific type, especially if the diagnosis remains uncertain after blood and genetic tests.

What are the signs and symptoms of MPNs?

What are the signs and symptoms of MPNs?

Dr. Jyoti Nangalia of the Wellcome Sanger Institute and Cambridge Stem Cell Institute provides an overview of the wide range of signs and symptoms experienced by people with myeloproliferative neoplasms (MPNs). She explains that while some people have no symptoms and are diagnosed through routine blood tests, others may experience fatigue, itching, blood clots, or more serious issues like weight loss or night sweats. Dr. Nangalia highlights how symptoms can gradually worsen over time and impact daily life. She also discusses an MPN symptom tracker tool that patients can use to monitor symptoms, improve communication with doctors, and guide treatment decisions.

What are the risks of living with an MPN?

What are the risks of living with an MPN?

Malignant hematologist Dr. Andrew Kuykendall discusses the risks of living with a myeloproliferative neoplasm (MPN). He explains that the most common risk is developing thrombosis, which can lead to serious cardiovascular events. To lower this risk, patients may be treated with medications, blood draws, or lifestyle changes. He also notes the potential for disease progression and emphasizes the importance of managing other health conditions. While some treatments may help delay progression, staying engaged with both a hematologist and primary care doctor is key to long-term care. Overall, living well with an MPN requires ongoing monitoring and proactive health management.

What are the expectations of living with an MPN?

What are the expectations of living with an MPN?

Dr. Jyoti Nangalia of the Wellcome Sanger Institute and Cambridge Stem Cell Institute provides an overview of what patients can expect when living with a myeloproliferative neoplasm (MPN). She explains that for many people, especially those with low-risk disease, MPNs can often be managed with regular monitoring and healthy lifestyle choices. For those needing more active treatment, care may include medication adjustments, follow-up tests, or additional procedures such as bone marrow biopsies. Dr. Nangalia emphasizes the importance of minimizing cardiovascular risk factors, staying engaged with healthcare providers, and tailoring care based on individual risk, symptoms, and disease progression.

How are MPNs treated?

How are MPNs treated?

In this video, Dr. Andrew Kuykendall speaks with Dr. Jyoti Nangalia about treatment approaches for myeloproliferative neoplasms (MPNs). Dr. Nangalia explains that a key goal of treatment is to reduce the risk of thrombosis (blood clots). Depending on a patient's risk level, treatment may include monitoring, low-dose aspirin, or medications to lower blood counts. In more advanced cases, therapies like JAK inhibitors may help manage symptoms and slow disease progression, while ongoing research aims to find treatments that prevent long-term complications.

Module 2: Essential Thrombocythemia (ET)

What is essential thrombocythemia (ET)?

What is essential thrombocythemia (ET)?

Dr. Gabriela Hobbs from the Mass General Brigham Cancer Institute explains that essential thrombocythemia (ET) is one of the most common myeloproliferative neoplasms (MPNs), affecting the blood cells called platelets, which help with clotting. In ET, the bone marrow produces too many platelets, sometimes along with changes in other blood counts. She explains that ET is caused by acquired genetic mutations in blood-forming stem cells, meaning they develop during a person's life and are not inherited. These mutations send incorrect signals to the bone marrow, leading to ongoing platelet overproduction.

Why and how did my essential thrombocythemia (ET) arise?

Why and how did my essential thrombocythemia (ET) arise?

In this video, Dr. Gabriela Hobbs explains that essential thrombocythemia (ET) usually develops later in life, most often diagnosed in people in their 60s, though about 20% are diagnosed before age 40. ET affects both men and women, with a slightly higher occurrence in women. While doctors do not know exactly why ET develops, it is caused by acquired genetic mutations in blood-forming stem cells. These mutations (most commonly JAK2, followed by CALR and MPL) cause the bone marrow to ignore normal signals and produce too many platelets, leading to the diagnosis of ET.

How is essential thrombocythemia (ET) diagnosed?

How is essential thrombocythemia (ET) diagnosed?

Dr. Gabriela Hobbs, Clinical Director of Leukemia Service at Massachusetts General Hospital, provides an overview of how essential thrombocythemia (ET) is diagnosed. She explains that ET is often first suspected when a routine blood test shows a high platelet count, though some people seek care for symptoms such as headaches or blood clots. Dr. Hobbs explains that high platelet counts alone are not enough for a diagnosis. Doctors use established criteria that include blood tests for specific genetic mutations, such as JAK2 , CALR , or MPL , and often a bone marrow biopsy to confirm ET and rule out other conditions. She also provides an overview of next-generation sequencing (NGS) and variant allele fraction (VAF).

What are the signs, symptoms, and expectations of living with ET?

What are the signs, symptoms, and expectations of living with ET?

In this video, Dr. Gabriela Hobbs explains the signs, symptoms, and expectations of living with essential thrombocythemia (ET). She notes that many people are diagnosed incidentally through routine blood tests and may have no symptoms. Some patients, however, may experience fatigue, headaches (including ocular migraines), numbness or tingling in the hands and feet, itching, or difficulty concentrating. Less commonly, fevers, night sweats, weight loss, or abdominal discomfort may occur. Dr. Hobbs emphasizes that new symptoms don't always mean disease progression, and staying in regular contact with a doctor helps manage health and quality of life.

What are the risks with essential thrombocythemia (ET)?

What are the risks with essential thrombocythemia (ET)?

Dr. Gabriela Hobbs from the Mass General Brigham Cancer Institute explains the risks and complications associated with essential thrombocythemia (ET). Patients with ET can be at risk for both blood clots and, paradoxically, bleeding—especially if platelet counts are very high. While progression to myelofibrosis occurs in about 10% of patients and acute leukemia in less than 5%, most people live long-term with ET. Dr. Hobbs emphasizes the importance of tracking symptoms, communicating with healthcare providers, and managing cardiovascular risk factors through regular activity, a balanced diet, and overall healthy lifestyle choices to reduce complications and support quality of life.

How is essential thrombocythemia (ET) managed and treated?

How is essential thrombocythemia (ET) managed and treated?

In this video, Dr. Gabriela Hobbs explains how essential thrombocythemia (ET) is managed and treated. Management begins with assessing the patient's risk of blood clots to determine if aspirin or medications to lower platelet counts (cytoreductive therapy) are needed. High-risk patients may receive hydroxyurea, interferons (like Pegasys or ropeginterferon), or occasionally ruxolitinib or anagrelide. Dr. Hobbs also discusses the importance of patients staying in communicaton with their care team, and how treatment decisions take into account a patient's risk for bleeding and disease-related symptoms. She provides an overview of special considerations for younger patients, particularly women planning pregnancy. Finally, Dr. Hobbs highlights emerging therapies under study that aim to better control blood counts and reduce mutation levels in ET.

Module 3: Polycythemia Vera (PV)

What is polycythemia vera (PV)?

What is polycythemia vera (PV)?

Dr. John Mascarenhas, Professor of Medicine at the Icahn School of Medicine at Mount Sinai, explains that polycythemia vera (PV) is a type of blood cancer in which the bone marrow overproduces red blood cells. He discusses the risks, including blood clots, bleeding, an enlarged spleen, and, for some patients, progression to myelofibrosis. Dr. Mascarenhas also explains that PV is a rare disease, affecting fewer than four people per 100,000.

Why and how did my polycythemia vera (PV) arise?

Why and how did my polycythemia vera (PV) arise?

In this video, Dr. John Mascarenhas explains that polycythemia vera (PV) arises from acquired gene mutations that signal the bone marrow to make too many red blood cells. Almost all people with PV have a mutation in a gene called JAK2 . He provides an overview of how this mutation drives inflammation and overproduction of blood cells, leading to symptoms like fatigue, itching, headaches, bone pain, and enlargement of the spleen or liver. PV is usually diagnosed around age 60 to 65, and men are slightly more likely than women to develop PV.

How is polycythemia vera (PV) diagnosed?

How is polycythemia vera (PV) diagnosed?

Professor of Medicine, Dr. John Mascarenhas, provides an overview of how polycythemia vera (PV) is diagnosed. PV is often first suspected when a routine blood test shows elevated blood cell counts, though some people are referred for symptoms such as headaches, an enlarged spleen, or blood clots. Dr. Mascarenhas emphasizes the importance of a baseline bone marrow biopsy, which confirms the diagnosis, evaluates fibrosis, and allows for genetic testing through next-generation sequencing (NGS) from the source of the bone marrow. He also explains the variant allele fraction (VAF), which measures the proportion of cells carrying the JAK2 mutation and helps estimate disease burden over time.

What are the signs, symptoms, and expectations of living with PV?

What are the signs, symptoms, and expectations of living with PV?

In this video, Dr. John Mascarenhas explains the wide range of signs and symptoms of polycythemia vera (PV). He notes that many people are diagnosed incidentally through routine blood tests and may have no symptoms, while others may experience blood clots, fatigue, headaches, aquagenic itching, or abdominal discomfort from an enlarged spleen. He emphasizes that symptom severity varies greatly between patients. Dr. Mascarenhas also explains why tracking new or worsening symptoms is important: it helps guide treatment decisions, supports quality of life, and ensures that physicians can address both PV-related issues and potential complications.

What are the risks with polycythemia vera (PV)?

What are the risks with polycythemia vera (PV)?

Dr. John Mascarenhas, a member of The Tisch Cancer Institute, discusses the main risks associated with polycythemia vera (PV). He explains that patients face risks from blood clots and bleeding, as well as fatigue, headaches, and anxiety related to disease progression. Dr. Mascarenhas emphasizes the importance of monitoring symptoms, blood counts, and organ size, and encourages patients to report any new or worsening symptoms to help track disease progression. He also provides guidance on lifestyle measures (such as staying active, maintaining a healthy diet, managing weight, and controlling other health conditions) to reduce complications and support overall well-being.

How is polycythemia vera (PV) managed and treated?

How is polycythemia vera (PV) managed and treated?

In this video, Dr. John Mascarenhas explains how polycythemia vera (PV) is managed and treated. He emphasizes that all patients benefit from low-dose aspirin and therapeutic phlebotomy to reduce hematocrit. High-risk patients (such as those over 60 or with prior blood clots) may also need medications to lower blood counts. Dr. Mascarenhas highlights the importance of personalized care, symptom management, and clear communication with a knowledgeable care team. He also provides an overview of emerging therapies and research that aim to improve outcomes and potentially alter disease progression.

Module 4: Myelofibrosis (MF)

What is myelofibrosis (MF)?

What is myelofibrosis (MF)?

Dr. Anand Patel of the University of Chicago explains that myelofibrosis (MF) is a subtype in the family of chronic blood cancers called myeloproliferative neoplasms (MPNs)—caused by abnormal signaling in the bone marrow that disrupts normal blood cell production. He describes how MF differs from related conditions such as polycythemia vera and essential thrombocythemia due to increased bone marrow scarring. Dr. Patel discusses how this scarring can lead to low blood counts, spleen enlargement, and other complications, and explains that MF can range from a slow-moving disease to more aggressive forms. He also outlines the differences between primary myelofibrosis and secondary myelofibrosis, which can develop from polycythemia vera or essential thrombocythemia.

Why and how did my myelofibrosis (MF) arise?

Why and how did my myelofibrosis (MF) arise?

Hematologist-oncologist, Dr. Anand Patel, explains why and how myelofibrosis (MF) develops. He describes MF as a chronic blood cancer caused by acquired gene mutations that arise over time in bone marrow stem cells, rather than being inherited. As these mutated cells multiply, they release substances that cause scarring (fibrosis) of the bone marrow, which interferes with normal blood cell production. Dr. Patel also explains that MF is most commonly diagnosed in people over age 60, though it can occur at younger ages too.

How is myelofibrosis (MF) diagnosed?

How is myelofibrosis (MF) diagnosed?

In this video, Dr. Anand Patel explains how myelofibrosis (MF) is diagnosed. MF is often first suspected when blood tests show abnormal blood counts or when symptoms such as anemia, abdominal bloating, or an enlarged spleen raise concern. Dr. Patel emphasizes that a bone marrow biopsy is required to confirm the diagnosis, as it shows scarring in the bone marrow and allows for genetic and chromosome testing. He also discusses how changes in blood counts or spleen size can signal progression from polycythemia vera or essential thrombocythemia to MF. He also describes how blood and bone marrow testing are used to identify mutations that help guide risk assessment and treatment decisions.

What are the signs, symptoms, and expectations of living with MF?

What are the signs, symptoms, and expectations of living with MF?

Dr. Anand Patel of the University of Chicago explains that the signs and symptoms of myelofibrosis (MF) can vary widely and are often nonspecific. He describes common symptoms such as fatigue related to anemia, night sweats, body aches, weight loss, and abdominal bloating or discomfort caused by an enlarged spleen. Dr. Patel notes that these symptoms can develop gradually and may overlap with other conditions, making MF harder to recognize early. He also discusses the importance of tracking symptoms over time and highlights the use of symptom assessment tools, which can help patients and care teams objectively measure symptom burden, monitor disease changes, and evaluate how well treatments are working.

How is myelofibrosis (MF) managed and treated?

How is myelofibrosis (MF) managed and treated?

Dr. Anand Patel, MD, explains how myelofibrosis (MF) is managed and treated across different stages of the disease. He discusses early MF, sometimes called prefibrotic or cellular-phase disease, where blood counts may be high and treatment may focus on symptom relief or careful monitoring. Dr. Patel provides an overview of current standard treatments, including JAK inhibitors, which can reduce spleen size and improve symptoms but are not curative. He explains that stem cell transplant is currently the only potential cure, though it is reserved for selected patients based on disease risk, overall health, and donor availability. Dr. Patel also describes treatment goals, lifestyle considerations during watchful waiting, and the importance of ongoing communication between patients and their care teams when making treatment decisions.

What new therapies are being developed for myelofibrosis (MF)?

What new therapies are being developed for myelofibrosis (MF)?

Assistant Professor of Medicine at the University of Chicago, Dr. Anand Patel, discusses emerging therapies that are shaping the future of myelofibrosis (MF) care. Dr. Patel explains that several new drugs are being studied in clinical trials, including combination approaches that pair novel agents with JAK inhibitors to improve spleen size reduction and symptom control (such as pelabresib used with ruxolitinib). He also discusses treatments for patients whose MF has not responded to prior therapy (including imetelstat) and highlights ongoing research targeting new disease pathways (such as nuvisertib). Overall, he emphasizes a move toward more personalized treatment strategies, including how established JAK inhibitors like momelotinib, pacritinib, and fedratinib may be best combined with newer therapies, rather than relying on a one-size-fits-all approach.

How can anemia be managed in myelofibrosis (MF)?

How can anemia be managed in myelofibrosis (MF)?

Hematologist-oncologist, Dr. Anand Patel, explains that anemia is a common challenge for people living with myelofibrosis (MF). He reviews several ways anemia can be managed, starting with blood transfusions, which can raise hemoglobin levels but usually work only for a short time. He also discusses erythropoiesis-stimulating agents (ESAs), which help the bone marrow produce more red blood cells, and medications sometimes used off-label to improve anemia (such as luspatercept). Dr. Patel highlights that certain JAK inhibitors, especially momelotinib, may help improve anemia in some patients. While none of these options permanently cure anemia, the goal is to reduce transfusions and help patients go longer without needing them.

This educational activity has been developed by MPN Research Foundation in collaboration with Mechanisms in Medicine Inc.

This activity is supported by independent educational grants from Disc Medicine, GSK, Incyte, Merck, PharmaEssentia, Sumitomo Pharma, and Takeda.

We are also deeply grateful to the individual donors whose generosity supports the MPN Research Foundation's mission and programs like this one.

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