NCCN Offers Free Webinar to Address Patient and Caregiver Questions About a Group of Rare Blood Cancers
Know What Your Doctors Know: Myeloproliferative Neoplasms (MPN) experts provide information and answer questions on diagnosis and treatment options.
Newswise — FORT WASHINGTON, PA [May 3, 2018] — The first of two free webinars on myeloproliferative neoplasms (MPN) — presented by the National Comprehensive Cancer Network (NCCN®) with funding from the NCCN Foundation® — took place on May 1. The webinars are co-hosted by the MPN Research Foundation, and endorsed by MPN Cancer Connection, MPN Education Foundation, and the Leukemia & Lymphoma Society. There will be an additional webinar at 11:00 am ET on Saturday, May 5. Visit NCCN.org/patientwebinar to register.
The following speakers are involved in the hour-long interactive conversation about these rare types of blood cancers, and how best to treat them:
- Aaron T. Gerds, MD, MS
Chair, NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®)
Panel for MPN
Case Comprehensive Cancer Center/Cleveland Clinic Taussig Cancer Institute
- Jaclyn M. Mau, RN
Nurse, Care Coordinator
Case Comprehensive Cancer Center/Cleveland Clinic Taussig Cancer Institute
- David Ricci
Board Member and Patient Advocate
MPN Research Foundation
The discussion provides an overview of what MPNs are, with a focus on the three classic types: polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF). These rare cancers, which are caused by mutation and abnormal growth in the blood’s stem cells, affect approximately 300,000 people in the United States. PV and ET can evolve into MF, which can evolve into acute myeloid leukemia (AML).
“Patients tend to be most concerned about the possible progression to AML, but doctors are often more worried about blood clots,” according to Dr. Gerds. “There’s a disconnect there, but for most people with MPN, the likelihood of developing AML is very low. In the highest risk group, generally people over 65 with more pronounced symptoms, progression will happen about 8.6 percent of the time.”
Mau’s portion discusses common symptoms, including anemia, fatigue, and an enlarged spleen (leading to false feelings of fullness or shortness of breath). Dr. Gerds’ focus is on some of the current treatments for MPNs, as well as some promising research being conducted to improve care in the future. That includes multiple studies into the positive effects of yoga for treating people with fatigue.
The conversation includes the reassurance that length and quality of life can remain normal with an MPN, and that there are treatment modifications to accommodate patients during pregnancy or who are trying to conceive. The speakers also stress the importance of ongoing monitoring to manage any symptoms that can evolve, and recommend seeing a specialist with high familiarity with MPNs, if possible.
“The amount of research grows every year, which is really encouraging to see,” said Ricci, while drawing attention to a recently-created patient registry on the MPN Research Foundation’s website. ”MPNs are not a one-size fits all disease, which is something we’re seeing across many types of cancer. Each individual progression could be different and evolve in unique ways. A lot of the research being done, we hope, will lead to more personalized solutions.”
The informational program was created in conjunction with the recently-released NCCN Guidelines for Patients for Myeloproliferative Neoplasms. The NCCN Guidelines for Patients® and NCCN Quick Guide™ sheet for MPN are available to read and download for free online at NCCN.org/patients and via the NCCN Patient Guides for Cancer mobile app. Printed editions can be ordered from Amazon.com for a small fee. NCCN Guidelines for Patients and NCCN Quick Guide™ sheets DO NOT replace the expertise and clinical judgment of the clinician.
This project was supported through the NCCN Foundation by a contribution from Incyte Corporation. NCCN independently develops and distributes the NCCN Guidelines for Patients and any related webinars. Supporters do not participate in the development of the NCCN Guidelines for Patients and are not involved with any content or recommendations contained therein.
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About MPN Research Foundation
The MPN Research Foundation is the only organization fully dedicated to funding research into the myeloproliferative neoplasms, a rare group of blood cancers which include polycythemia vera, essential thrombocythemia and myelofibrosis. Founded in 2000 by a group of patients, the focus is to fund high innovation research that can expand our understanding of the MPNs and get us closer to a cure.
The Foundation’s Scientific Advisory Board works with the patient-led board of directors to utilize a rigorous selection process to ensure donations are allocated to the most innovative research projects. To date, the Foundation has awarded twelve million dollars for MPN research. More information may be obtained at http://www.mpnresearchfoundation.org/myMPN or by contacting us at mwoehrle(at)mpnrf.org or 312-683-7243.
MPN Research Foundation remains committed to a portfolio of research funding that includes an annual Request for Proposals for new scientific ideas of how to help patients with PV, ET and MF, as well as strategic research initiatives focused on areas of unmet need that could prove fruitful for improving the quality and/or length of life for MPN patients. You are invited to learn more at http://www.mpnresearchfoundation.org.
About NCCN Foundation
NCCN Foundation® was founded by the National Comprehensive Cancer Network® (NCCN®) to empower people with cancer and advance oncology innovation. NCCN Foundation supports people with cancer and their caregivers by delivering unbiased expert guidance from the world’s leading cancer experts through the library of NCCN Guidelines for Patients® and other patient education resources. NCCN Foundation is also committed to advancing cancer treatment by funding the nation’s promising young investigators at the forefront of cancer research, initiating momentum in their careers and improving patients’ lives through their groundbreaking research. For more information about NCCN Foundation, visit NCCN.org/patients.
About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers.
The NCCN Member Institutions are: Fred & Pamela Buffett Cancer Center, Omaha, NE; Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute, Cleveland, OH; City of Hope Comprehensive Cancer Center, Los Angeles, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Mayo Clinic Cancer Center, Phoenix/Scottsdale, AZ, Jacksonville, FL, and Rochester, MN; Memorial Sloan Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Comprehensive Cancer Center, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UC San Diego Moores Cancer Center, La Jolla, CA; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Colorado Cancer Center, Aurora, CO; University of Michigan Rogel Cancer Center, Ann Arbor, MI; The University of Texas MD Anderson Cancer Center, Houston, TX; University of Wisconsin Carbone Cancer Center, Madison, WI; Vanderbilt-Ingram Cancer Center, Nashville, TN; and Yale Cancer Center/Smilow Cancer Hospital, New Haven, CT.
 Metha J, Wang H, Iqbal SU, Mesa R, Epidemiology of myeloproliferative neoplasms in the United States, Leuk Lymph 2014;55:595-600.