About MPNs: A Shareable Guide for Patients, Family and Friends

 

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About MPNs: A Shareable Guide for Patients, Family and Friends

 

  • Myeloproliferative neoplasms (MPNs) are types of blood cancers that overproduce blood cells in the bone marrow, due to genetic mutations that originate in the stem cells. This genetic mutation leads to the overproduction of white blood cells, red blood cells and platelets in the bone marrow. 
  • The main types of MPNs are essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF). Each type has its own set of symptoms and complications, which can be different for every patient. 
  • Some patients may develop ET first and then may or may not, over many years, progress to PV or MF. Some patients may be initially diagnosed with PV or MF.  Progression from one condition to another varies greatly, as do treatments for each condition. 
  • It is important to have an accurate diagnosis and a clear understanding of a patient’s specific situation. 
  • In recent years, a genetic understanding of MPNs has led to new therapies and greatly improved outcomes for patients with even more advanced disease. The field is changing rapidly bringing great hope to people afflicted by an MPN.

  

MPN Support

A diagnosis of a myeloproliferative neoplasm (MPN) like essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF) can be overwhelming for the entire family. Open discussion between family members, health professionals, and patients can help ensure the best care. There are many different places to find a wide range of information on MPNs. We encourage you to join our community and to check out our brief videos to find the most up-to-date information from leading experts about support, new treatments, clinical trials, communication, financial issues and much more.

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MPN Videos and Transcripts

MPN Basics: Defining ET, PV, MF and Associated Symptoms

At a recent MPN forum in Denver, Dr. Naval Daver and Dr. Nicholas Di Bella explained the differences between the essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF).

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Strategies for Managing Your MPN Symptoms

Dr. Brady Stein from Northwestern Medicine and Dr. Alison Moliterno discuss causes of MPN symptoms, such as fatigue and itching, and what can be done to alleviate the issues.

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Understanding New Categories of MPN Therapy

Dr. Laura Michaelis of Medical College of Wisconsin supplies an overview of MPN therapies, both those currently in use and those still in development.

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Tips for Coping With a New Diagnosis: Living Well With MPNs

Being diagnosed with a rare condition like an MPN can be overwhelming. MPN patients Andi and David share how they coped with a new diagnosis, while MPN experts Dr. Brady Stein and Lindsey Kalhagen discuss their approach to managing emotional issues with patients.

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Turning a PV Diagnosis Into a Positive: One Woman’s Journey

Annette De Bow shares her journey staring with her PV diagnosis, the visits with her first hematologist and why she decided to seek out better care. She also talks about how she started Trek for a Cure to raise funds for research by hiking.

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What Causes Night Sweats and Itching in MPNs?

In this “Ask the Expert” segment featuring Dr. Naval Daver from MD Anderson Cancer Center, Dr. Daver explains how certain MPN symptoms are part of the MPN process and advises patients to bring these symptoms to the attention of their physician.

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Expert Perspective: Encouraging MPN Research and Treatment Progress

Meet Dr. Laura Michaelis, Clinician and Clinical Researcher at Medical College of Wisconsin. She discusses the evolving landscape and scientific advantages in the field of MPNs including precision medicine, driver mutations and the developing role of social media.

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Expert Perspective: Managing MPNs When Treatments Lose Effectiveness

Dr. Srdan Verstovsek from The University of Texas MD Anderson Cancer Center shares his perspective on disease management, genetic mutations, drug resistance and the future of research for myeloproliferative neoplasms (MPNs).

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Expert Perspective: How MPN Gene Mutations Affect Prognosis and Treatment

Andrew Schorr and MPN specialist Dr. Jamile Shammo of Rush University Medical Center discuss the complicated biological mechanisms and pathways of MPNs and how recent discoveries point to improved quality of life for patients.

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Page last updated on June 14, 2016
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