New Tool Helps People with Leukemia Better Understand Their Treatment Options
National Comprehensive Cancer Network releases NCCN Guidelines for Patients: AML
FORT WASHINGTON, PA [May 14, 2018] — The National Comprehensive Cancer Network® (NCCN®) has released a free booklet to empower people with acute myeloid leukemia (AML) and their loved ones with resources for better-informed medical decision-making. The NCCN Guidelines for Patients: AML publication was made possible thanks to funding from the NCCN Foundation®, and sponsorship from Be The Match®. It contains information from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), used by clinicians worldwide – translated into understandable, everyday English.
“I didn't even know what leukemia was, really, or how I could go from having a cold to having cancer,” said Matt Tsun, who was diagnosed with AML at age 29. “The last thing I thought was that I would have cancer before I was 30. But when something like this is thrown at you, you have no choice but to play the hand you've been dealt and fight hard.”
Matt is just one of the approximately 21,000 people diagnosed with AML every year. It is the most common form of acute leukemia among adults. The best course of treatment can vary depending on the subtype, but will generally involve multiple phases. AML and its treatment can also lead to severe health problems that may be prevented or relieved with supportive care.
“AML, although a rare cancer, is the most common disease treated by allogeneic bone marrow transplant (BMT). Due to advances in treatment and supportive care, potentially curative therapies like BMT are more available to patients with AML. The release of the new NCCN patient guidelines for AML will help patients and their families have access to easy-to-understand information so they can make informed decisions about their treatment,” said Elizabeth A. Murphy, EdD, RN, Vice President, Patient & Health Professional Services and Education & Training, Be The Match.
The NCCN Guidelines for Patients: AML is also endorsed by Aplastic Anemia and MDS International Foundation (AAMDS), Blood & Marrow Transplant Information Network (BMT InfoNet), Leukemia and Lymphoma Society (LLS), and National Bone Marrow Transplant Link (nbmtLINK). Each booklet includes a list of suggested questions to bring up with the doctor, patient-friendly illustrations, and a glossary of key terms and acronyms. They are available free-of-charge online at NCCN.org/patients, or via the NCCN Patient Guides for Cancer app. Printed versions can be purchased at Amazon.com for a small fee.
“Treating AML can be very complex, and requires a team approach,” explained Margaret R. O’Donnell, MD, City of Hope. Dr. O’Donnell is the Chair of the NCCN Guidelines Panel for AML. “I’m glad that patients everywhere now have a reliable source for free, evidence-based information that they can read and absorb at their own pace.”
“People with AML often aren’t aware that this isn’t a single disease – but many different diseases that share fundamental characteristics,” said Martin Tallman, MD, Memorial Sloan Kettering Cancer Center, who is the panel’s Vice-Chair. “The good news is that the future for AML is getting a lot brighter. After forty years without much progress, four new medications were just approved last year, and more new treatment courses are in development as we speak.”
In addition to creating new patient guidelines, NCCN frequently updates existing ones. The organization recently released a refreshed version of the NCCN Guidelines for Patients with Soft Tissue Sarcoma. Sarcomas represent approximately one percent of adults with cancer, with an estimated 13,000 people expected to be diagnosed in 2018. The updated booklet includes several new treatment options, plus up-to-date information about imaging, genetics, and staging. That booklet was made possible with funding provided by the NCCN Foundation, with special thanks to sponsorship from the Sarcoma Alliance for Research through Collaboration (SARC).
In the months ahead, NCCN plans to release new NCCN Guidelines for Patients for Hepatobiliary (liver, gall bladder, and bile duct), Bladder, and Uterine and Endometrial cancers.
NCCN currently offers NCCN Guidelines for Patients for the following: Brain, Breast*, Colon*, Esophageal*, Kidney, Non-Small Cell Lung, Ovarian, Pancreatic, Prostate*, Rectal, Stomach and Thyroid Cancers; Acute Lymphoblastic Leukemia; Adolescents and Young Adults with Cancer; Chronic Lymphocytic Leukemia; Chronic Myelogenous Leukemia; Distress/Supportive Care; Hodgkin Lymphoma; Lung Cancer Screening; Malignant Pleural Mesothelioma; Melanoma; Multiple Myeloma; Myelodysplastic Syndromes*; Myeloproliferative Neoplasms; Nausea and Vomiting/Supportive Care; Non-Hodgkin’s Lymphomas; Soft Tissue Sarcoma; and Waldenström’s Macroglobulinemia. (* Indicates guidelines with recent or upcoming updates.)
NCCN Guidelines for Patients and NCCN Quick Guide™ sheets DO NOT replace the expertise and clinical judgment of the clinician.
To help support these tools, visit NCCN.org/patients or text “GIVE” to 856-FOR-NCCN (856-367-6226).
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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.
Clinicians, visit NCCN.org. Patients and caregivers, visit NCCN.org/patients. Media, visit NCCN.org/news. Follow NCCN on Twitter @NCCNnews and Facebook @National.Comprehensive.Cancer.Network.
About National Marrow Donor Program® (NMDP)/Be The Match®
National Marrow Donor Program (NMDP)/Be The Match is the global leader in providing a cure to patients with life-threatening blood and marrow cancers such as leukemia and lymphoma, as well as other diseases. The nonprofit organization manages the world’s largest registry of potential marrow donors and cord blood units, connects patients to their donor match for a life-saving marrow or umbilical cord blood transplant, educates health care professionals and conducts research through its research program, CIBMTR® (Center for International Blood and Marrow Transplant Research®), so more lives can be saved. NMDP/Be The Match also provides patient support and enlists the community to join the Be The Match Registry®, contribute financially and volunteer.
To learn more about support for patients visit BeTheMatch.org/patient, call 1 (888) 999-6743 or email: firstname.lastname@example.org.
 Siegel RL, Miller KD, Jemal A Cancer Statistics, 2017. CA Cancer J Clin 2017;67:7-30. Available at: https://www.ncbi.nlm.nih.gov/pubmed/28055103
 Siegel RL, Miller KD, Jemal A. Cancer Statistics, 2018. CA Cancer J Clin 2018;68:7-30. Available at https://www.ncbi.nlm.nih.gov/pubmed/29313949.