Multidisciplinary NET Teams
Luncheon with the Experts Continues
Tom Bajoras and Lisa Yen, will be the featured guests for Facebook Live, Luncheon with the Experts on Thursday, September 17 from 12 noon to 1 pm, Eastern Time.
Tom Bajoras is a composer, pianist, audio producer, and NET patient; Lisa Yen, NP, NBC-HWC is the Program Director of LACNETS (the Los Angeles Carcinoid and Neuroendocrine Tumor Society).
Tom founded a software company, Art+Logic, that has created custom software for Apple, Disney, Fox, NBC, and Google, among hundreds of others. His most recent albums are Surprised By Beauty, released in 2018, and By Day or by Night, released in 2020. In 2015 Tom was diagnosed with a pancreatic NET which had metastasized to his liver.
Before her husband’s diagnosis, Lisa Yen was a nurse practitioner hospitalist for more than 12 years. She is now a patient advocate and a Nationally Board-Certified Health and Wellness Coach. She is passionate about helping to improve the quality of life for all whose lives have been touched by NETs. Active in community service, Lisa has participated in medical missions in Haiti and Kenya.
To view the program come to CCF’s Facebook page, https://www.facebook.com/Carcinoid/, at noon Eastern Time. There is no need to register and there is no special link.
Viewers are welcome to pose questions during the live program.
If you are on Facebook but unable to join at the scheduled time, the presentations will remain permanently on CCF’s Facebook page in the Video section, https://www.facebook.com/pg/Carcinoid/videos/.
And for anyone not on Facebook, each of the presentations in the series will be available on CCF’s YouTube channel, https://www.youtube.com/user/CarcinoidNETs. To receive notifications of all new videos on our YouTube channel, click Subscribe and sign up to receive notifications each time a new video is uploaded.
Sign up for our e-newsletter to receive notifications about all upcoming Luncheon with the Experts programs, every Thursday from noon to 1 pm ET, as well as lots of additional news of interest to the NET community: https://bit.ly/SignUpCCFe-news.
Latest News
FDA Approves New NET Diagnostic Imaging Radiopharmaceutical
The U.S. Food and Drug Administration (FDA) has approved Detectnet™, copper Cu 64 dotatate injection. This is a new diagnostic radiopharmaceutical for use with positron emission tomography (PET) for the detection, localization, and monitoring of somatostatin receptor positive NETs. Read more about copper Cu 64, https://www.curiumpharma.com/2020/01/07/fda-new-drug-filing-cu-64/
NANETS 2020 Grant Recipients
Exciting news from NANETS, the North American Neuroendocrine Tumor Society, about the 2020 Research Grant Recipients. Congratulations to Dr. Heloisa Soares of the Huntsman Cancer Institute, University of Utah; Dr. Xavier Keutgen of the University of Chicago Medical Center; and Dr. Brendan Finnerty of Weill Cornell Medicine! Read more about the grants and the recipients here, https://nanets.net/research/grant-recipients.
CCF Debuts New Video Series
CCF is presenting a new video series beginning with “The ABCs of Neuroendocrine Cancer: 2020 Update,” featuring neuroendocrine cancer expert physicians!
In the dynamic world of diagnosing and treating people living with neuroendocrine tumors (NETs), four expert physicians discuss everything from the increased incidence of NETs to symptoms of the disease and how to live with NETs for many years. What is unique about NETs? Where do NETs form in the body? What are the most recent advances in imaging and treatment options? Dr. Emily Bergsland, Dr. Pamela Kunz, Dr. Rodney Pommier, and Dr. Edward Wolin provide an overview about this uncommon cancer and offer patients perspectives from key opinion leaders in the field.
CCF gratefully acknowledges support for this series which has been made possible by Lexicon Pharmaceuticals, Novartis Pharmecuticals, Ipsen Biopharmaceuticals, and the Maryvale Sisters, In Loving Memory of Sister Mary Norman.
CCF Website for PRRT and Gallium-68 PET/CT Scan
Visit CCF’s website dedicated to providing information about PRRT and the Gallium-68 PET/CT scan. This site includes an interactive map to locate facilities where PRRT and/or the Gallium-68 PET/CT scan are being offered. The map will be updated regularly as additional facilities provide these services. https://www.prrtgalliumcenters.org/.
Promising Developments in the Pipeline for High Grade Neuroendocrine Tumor Diagnosis and Treatment
“Treatment for high grade neuroendocrine neoplasms (abnormal tissue growth) is moving the way that the treatment for triple negative breast cancer is moving — toward the realization that there are a basket of subtypes and that each can be potentially treated differently,” according to Aman Chauhan, MD, medical oncologist, Director of NET Theranostics, Markey Cancer Center (NCI Designated Cancer Center), University of Kentucky. Insights gained through clinical trials will change how these cancers are diagnosed and treated. Read more
Peptide Receptor Radionuclide Therapy, PRRT: Information and Locations
Since we shared the news of the FDA’s January 26, 2018 approval of peptide receptor radionuclide therapy, PRRT, with Lutathera (lutetium Lu 177 dotatate), more information has become available for the neuroendocrine tumor community, including updates about coverage and reimbursement; information about patient assistance programs being offered by Advanced Accelerator Applications (AAA), the manufacturer of Lutathera; new patient materials from Advanced Accelerator Applications; and locations where the treatment is currently being offered. Read more
Gallium 68 PET/CT Scanning for Neuroendocrine Tumors — Information and Locations
The US Food and Drug Administration’s June 1, 2016 approval of the Gallium-68 PET/CT DOTATATE scan using NETSPOT® heralded a new age of nuclear imaging in the United States for neuroendocrine tumors. Click here for more information about the scan and locations of where it is being offered throughout the US. We will be adding to the list based on feedback from the NET community.
CCF Infographic: 6 Questions to Ask Your Doctor
Have you or someone you love been diagnosed with a neuroendocrine tumor or carcinoid cancer? It can feel like a daunting task to figure out next steps and doctor appointments may be overwhelming. You can help yourself or support a loved-one by learning about the disease and preparing yourself for doctor visits. The first visit may be the most challenging, so It’s important to arm yourself with relevant questions. Here we provide you with six questions, specific to neuroendocrine tumors, to ask your doctor. Click here to download the infographic.
Carcinoid Syndrome Website
The Carcinoid Cancer Foundation’s website www.carcinoidsyndrome.org is a space for everything about carcinoid syndrome – from diagnosis and treatment to news and community updates. This site is a great resource for patients, caregivers, and physicians alike – looking to learn more about carcinoid syndrome.
Guide to Understanding Carcinoid Syndrome
Know the signs and symptoms — skin flushing, diarrhea, heart racing . . . it could be carcinoid syndrome! How is it diagnosed, what are the treatment options, what questions should you ask your healthcare provider? Read more in Guide to Understanding Carcinoid Syndrome, from Health Monitor and the Carcinoid Cancer Foundation: https://www.carcinoid.org/wp-content/uploads/2015/10/Carcinoid-Syndrome-Guide-to-Understanding.pdf.
Reaching Those Who Are Still Undiagnosed
To combat statistics showing that it often takes 5 to 7 years for patients to receive the correct diagnosis of a neuroendocrine tumor (NET), the Carcinoid Cancer Foundation has partnered with Advanced Accelerator Applications to create an infographic listing common symptoms and misdiagnoses. Please share this broadly in hopes of helping others get the proper diagnosis more quickly. Download the infographic here.
