Living with Neuroendocrine Tumors

People with neuroendocrine tumors can lead meaningful, active, productive lives. Learn how you can make the most of every day.

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made one or more lifestyle changes due to NETs2
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report general fatigue/muscle weakness2
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experienced diarrhea2
The latest in NET News

From Education to Experience: How one family’s NET experience led to better educational resources for NET patients and families.

“In 2012, my husband was diagnosed with a neuroendocrine tumor (NET) cancer. At that time, there was little information and few treatment options,” said Suzanne Ludlow, NETRF Board Member and generous benefactor of NETRF’s second edition of “Neuroendocrine Cancer: A Guide for Patients and Families.”  Suzanne lost her beloved husband Vincent in 2017, but she’s honoring his life while supporting other patients and families navigating NETs as a new member of the NETRF Board of Trustees. Read more about Suzanne and Vincent’s story here. 

NETRF-funded Research Sets the Stage for Study Exploring Use of Terbium-161 in NETs

A new clinical trial being conducted at a single center in Switzerland aims to explore a therapy using a novel somatostatin receptor subtype 2 antagonist labelled with Terbium-161 (161Tb-DOTA-LM3). The study is sponsored by University Hospital, Basel, in collaboration with the Swiss National Science Foundation and the Paul Sherrer Institute and builds upon research funded by NETRF.

Study Focuses on Matching Patients with Rare Cancers and Cancer of Unknown Primary to Targeted Treatments

A patient advocacy-led clinical research study aims to determine if patients who have rare tumors can benefit from matched molecular therapy based on the results of their genomic profiling. Patients with neuroendocrine tumors and unknown primaries may be eligible for this study. Sponsored by the TargetCancer Foundation, in collaboration with Foundation Medicine Inc., the TCF-001 TRACK (Target Rare Cancer Knowledge) Study uses next-generation sequencing to develop a comprehensive genomic profile of each participant’s tumor as well as their plasma circulating cell-free DNA (blood).

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2Singh S, Granberg D, Wolin E, et al. Patient-reported burden of a neuroendocrine tumor (NET) diagnosis: results from the first global survey of patients with NETs. J Glob Oncol. 2016;2(1):43-53.