New Tool Helps People with Leukemia Better Understand Their Treatment Options

In In The News by Barbara Jacoby

National Comprehensive Cancer Network releases NCCN Guidelines for Patients: AML

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.[1] 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.[2] 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).

Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.