New Video: Clinical Trials
Luncheon with the Experts Continues
Rodrigo Vianna, MD, PhD, will be the featured guest for Luncheon with the Experts on Thursday, December 3 at 12 noon Eastern Time. Dr. Vianna leads the Miami Transplant Institute (MTI), a unique affiliation between Jackson Health System and UHealth – University of Miami Health System, as director of MTI and chief of liver, intestinal, and multivisceral transplant. Dr. Vianna is an accomplished liver transplant surgeon and a pioneer in intestinal and multivisceral transplantation. He is also a professor of clinical surgery at the University of Miami Miller School of Medicine.
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 HIT THE BELL 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
Giving Tuesday, December 1
New NET Video in Honor of NET Cancer Awareness Month
To commemorate Neuroendocrine Cancer Awareness Month in November and World #NETCancerDay on November 10, and in recognition of all lives touched by neuroendocrine cancer, Sun Pharma has sponsored the creation of the NET Effects video. The insights, perspectives and experiences shared by NET experts, advocates, patients and caregivers, will inspire you as we join together to raise awareness about NETs. Please share the video which celebrates all committed to NET advocacy, education, research, treatment advances and care – including viewers like you!
Pancreatic Neuroendocrine Tumors Facebook Live Webinar, Now Available for Viewing at Your Convenience
The American Association of Endocrine Surgeon’s November 19th Facebook live, free webinar focusing on Pancreatic Neuroendocrine Tumors with a panel of NET experts is now available for viewing at your convenience. Click here to watch the webinar: https://www.facebook.com/TheAAES/videos/668861987156285.
CURE Extraordinary Healer Award for Oncology Nursing
CURE is now accepting nominations for the 2021 Extraordinary Healer Award for Oncology Nursing, a unique opportunity to honor an extraordinary oncology nurse. You are invited to describe the compassion, expertise and helpfulness a special nurse has exhibited in caring for patients with cancer. Essay nominations will be accepted from health care professional colleagues, current or former patients, and caregivers. Click here to submit your nomination by January 15, 2021.
NEW Survey: Understanding Patient Preferences in NET Treatments (CLOSING SOON!)
When you meet with your healthcare team do you discuss what is important to you as you consider treatment options? You can help physicians better understand patient-centered treatment decision making by participating in this new, international survey, DIRECT NETs. Read more and take the survey today
TerSera Therapeutics Acquires Xermelo and Continued NET Patient Nursing Support Services
TerSera Therapeutics recently acquired Xermelo (telotristat ethyl) from Lexicon Pharmaceuticals. Xermelo is the first and only FDA-approved prescription medicine, used along with somatostatin analog (SSA), for carcinoid syndrome diarrhea in adults who are inadequately controlled by SSA therapy. Lexicon’s Clinical Nurse Educator team has transitioned to TerSera Therapeutics. As such, there will be no disruption in Xermelo nursing support for neuroendocrine tumor patients. If you would like to speak with a Clinical Nurse Educator, visit www.enrollxermelo.com to enroll and a nurse will contact you within 48 hours. Read more
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.
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
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.
