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  • Patient Guide to Neuroendocrine Cancer Treatment & NET Vitals | NCF

    Use NET Vitals as a patient guide to neuroendocrine cancer treatment. Track important information, understand terminology, & prepare for appointments! NET Vitals: Your Guide to Understanding Neuroendocrine Cancer Download NET VITALS NET VITALS can be filled out digitally or printed and filled out. WHAT IS NET VITALS? LACNETS (now the Neuroendocrine Cancer Foundation) created NET VITALS as a tool for patients and healthcare professionals to share the most important information about a patient’s neuroendocrine tumor, or NET. In just 20 questions, filling out NET VITALS helps you learn the “vitals” of your NET. With all the important information about your disease in one document, NET VITALS gets you and your physician on the same page about your neuroendocrine cancer. Our hope is that NET VITALS will empower patients and improve patient-provider communication. Fill out NET VITALS in preparation for your medical appointment and bring it with you. Carry it with you as an important emergency document. NET VITALS aids with record-keeping and prompts for scan image disks and reports. Watch to learn how to navigate NET VITALS NEWLY DIAGNOSED? Are you newly diagnosed and want to learn the most important information about your neuroendocrine cancer (its “vitals”)? NET VITALS is a guide to biomarkers, terminology, and common procedures and treatments. NET VITALS provides a working document for the patient to understand key vocabulary about their disease and a way to keep track of their status. You are not expected to be familiar with all these terms or know all the answers. NET VITALS may identify questions for you to ask your doctor. LIVING WITH NETS? NET VITALS helps the patient keep current on their disease status and more easily communicate with their physician. NET VITALS can be particularly helpful when seeing a new doctor as part of the multi-disciplinary team or seeking a second opinion. It’s a shortcut to communicate the patient’s disease status in a “snapshot” and all in one place. HOW CAN NET VITALS HELP? Prepare for your appointment with your NET specialist by getting organized and compiling your information and records. Educate yourself on your disease by understanding how this information relates to you. Clarify questions you have for your doctor(s). Makes your medical appointment more efficient. HOW DO I FILL OUT NET VITALS? Download NET VITALS here. Build your NET INTRO or NET elevator speech , which consists of items #2-6 of NET VITALS. Watch the NET VITALS webinar. When you encounter unfamiliar terms and treatments, refer to the resources on the last page of the NET VITALS document. CNETS provides an excellent comprehensive patient guide that can be found here. Filling out NET VITALS can help identify the information that the NET specialist can clarify. As you complete it, you can build your list of questions to bring to your appointment. The Neuroendocrine Cancer Foundation (previously LACNETS) thanks Dr. Dan Li at City of Hope for being our Medical Advisor on NET VITALS. NET VITALS is featured in the following publications: In 2022, NET VITALS was featured in the journal, Pancreas. The study concluded that NET VITALS is a feasible and acceptable self-assessment tool to potentially help patients improve communication about their NET diagnosis/treatment with their physician. Read the full article here. In 2023, NET VITALS was featured in the Journal of Clinical Medicine. The article describes a proposed infrastructure for its implementation into standard clinical care in both academic and community practice settings at City of Hope. We hope that incorporating NET VITALS into standard of care treatment for patients with neuroendocrine tumors may improve patients’ overall clinical care experience. Read the full article here. NOTE: NET VITALS is a document for personal use only. It is not submitted to nor collected by LACNETS. It is a document for you to fill out and take with you to your physician appointment. This document is intended for informational and educational purposes only and is not a substitute for professional medical advice. Always consult with your physician or health care provider.

  • Sep2026 | NeuroendocrineCancer

    << Go Back to NCF Events Page "LUNCHEON WITH THE EXPERTS" With Dr. Aman Chauhan " Luncheon With The Experts ” is a recurring educational outreach series (previously hosted by the Carcinoid Cancer Foundation) aimed at patients, caregivers, and the broader neuroendocrine cancer community. The sessions are hosted by Rain Bennett. The series features medical specialists — oncologists, surgeons, researchers, and other clinical experts — in neuroendocrine cancer and answer audience questions live via chat. Programs are typically delivered live (over Facebook Live and YouTube Live ) at noon Eastern Time, allowing participants to join during their lunch break. Live sessions are recorded and will be available afterward. ABOUT AMAN CHAUHAN, MD, MBBS Medical Oncologist University of California, San Francisco Aman Chauhan, MD, MBBS, is an Associate Professor of Medicine at the University of California, San Francisco. He earned his medical degree from Kasturba Medical College in Manipal, Karnataka, India, followed by a dual residency in internal medicine and pediatrics at Louisiana State University in New Orleans. He completed his fellowship in hematology and oncology at the University of Kentucky, where he developed a focus on neuroendocrine tumors. He also completed a Cancer Therapy Evaluation Program physician externship at the National Cancer Institute focused on clinical trial design and clinical research. Dr. Chauhan’s clinical and research interests include neuroendocrine neoplasms, including neuroendocrine tumors, carcinoid tumors, high-grade neuroendocrine carcinomas, and small and large cell neuroendocrine carcinoma. His work includes clinical trials, radiopharmaceutical therapy, theranostics, treatment sequencing, symptom management, and guideline development for neuroendocrine cancers. Dr. Chauhan has authored numerous scientific publications and book chapters and has received a career development award from NCI CTEP. He has served on AJCC and ASCO neuroendocrine tumor guideline committees and is an active member of the North American Neuroendocrine Tumor Society. He is board certified in internal medicine and medical oncology and is a member of leading oncology and cancer research organizations, including ASCO, AACR, and NANETS. HOST The sessions are hosted by Rain Bennett , a two-time Emmy-nominated filmmaker, author, and experienced host who produces and leads live conversations on behalf of the Neuroendocrine Cancer Foundation. Bennett has been involved with the neuroendocrine cancer community as a longtime filmmaker and supporter, using his storytelling and interview skills to bring expert perspectives to patients and caregivers. THANKS TO OUR SPONSORS The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by NCF or the sponsors of this program. NCF does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. << Go Back to NCF Events Page

  • Novartis | NeuroendocrineCancer

    < Back to the supporters page ABOUT NOVARTIS Novartis is reimagining cancer care with radioligand therapies (RLTs) for patients with advanced cancers, including neuroendocrine tumors. We are proud of our 30-year legacy as an innovator in the neuroendocrine tumor community, leading developments that strive to transform the lives of people with this rare disease. At Novartis, we have a commitment to working together with patients. Our significant investment in research and development underpins our commitment to using science-based innovation to address some of society's most challenging healthcare issues. Only by working together can we improve outcomes for patients and change the practice of medicine. For more information, please visit: https://us.lutathera.com . This information is for educational purposes only and does not substitute for medical advice or constitute an endorsement by NCF. Talk to your medical team about your individual care and treatment. Confirm Your Visit to the Novartis Virtual Booth! First name Last name Email Submit << Previous Next >>

  • Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC | NeuroendocrineCancer

    Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC << Back Study of RYZ101 in Combination with SoC in Subjects with SSTR+ ES-SCLC IDENTIFIER ( ClinicalTrials.gov ) : NCT05595460 DRUG/TREATMENT : ALPHA PRRT with 225Ac-DOTATATE Actinium 225 radiolabeled somatostatin analog (SSA) for injection + Carboplatin + Etoposide + Atezolizumab PHASE : 1b STATUS : Recruiting SPONSOR : RayzeBio, Inc. DESCRIPTION: https://www.youtube.com/watch?v=wsaopISJmRY Dr. Aman Chauhan at Sylvester Comprehensive Cancer Center, University of Miami discusses the "Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC ." Recorded: June 20, 2024 RayzeBio is sponsoring this phase 1b trial with ALPHA PRRT with 225Ac-DOTATATE for extensive stage small cell lung cancer (ES-SCLC). This trial studies the safety and dosimetry to determine the safety, preliminary antitumor activity, and pharmacokinetics (PK) of RYZ101 ( ALPHA PRRT with 225Ac-DOTATATE Actinium 225 radiolabeled somatostatin analog (SSA) in combination with standard of care (SoC) therapy consisting of carboplatin + etoposide + atezolizumab in untreated subjects with somatostatin receptor expressing (SSTR+) ES-SCLC. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT : RayzeBio Clinical Trials EMAIL: clinicaltrials@rayzebio.com PHONE: 619-657-0302

  • PRRT/Radioligand Therapy (RLT) | NeuroendocrineCancer

    << Back PRRT/Radioligand Therapy (RLT) PRRT/RLT Trials 225Ac-ABD147 to Establish Optimal Dose in Patients With SCLC and LCNEC of the Lung That Previously Received Platinum-based Chemotherapy Alpha PRRT with Pb-212 (all NET) Alpha PRRT with Ac-225 (GEP-NETs only) Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC COMPOSE (GEP-NETs) Alpha PRRT with Pb-212 VMT Alpha PRRT with RYZ401 in PRRT-naive Solid Tumors Expressing SSTRs ComPareNET Lu-177 vs CAPTEM in PNETs Lu-177 + Carboplatin, Etoposide, and Atezolizumab in SCLC Lu-177 DOTATATE + Cabozantanib (all NET) Lu-177 DOTATATE + M3814 (Peposertib) (GEP-NETs) Lu-177 DOTATATE + Olaparib (GEP-NETs) Lu-177 DOTATATE + Sunitinib in PNETs Lu-177 DOTATATE + Triapine in GEP-NETs Lu-177 DOTATATE vs Everolimus in Lung NETs NETTER-P: Lutathera in Adolescent Patients NET RETREAT of Lu-177 Retreatment vs Everolimus in Midgut NET Alpha PRRT Trials Alpha PRRT with Pb-212 (all NET) Alpha PRRT with Ac-225 (GEP-NETs only) Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC Alpha PRRT with Pb-212 VMT Alpha PRRT with RYZ401 in PRRT-naive Solid Tumors Expressing SSTRs Combo Trial with Lu177 + Additional Medication Lu177 DOTATATE + M3814 (Peposertib) (GEP-NETs) Lu177 DOTATATE + Olaparib (GEP-NETs) Lu-177 DOTATATE + Triapine in GEP-NETs Lu177 DOTATATE + Cabozantanib (all NET) Lu-177 DOTATATE + Sunitinib in PNETs PRRT for Specific Populations Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC Lu-177 + Carboplatin, Etoposide, and Atezolizumab in SCLC Lu-177 DOTATATE vs Everolimus in Lung NETs NETTER-P: Lutathera in Adolescent Patients PRRT Comparison Trial of Lu177 versus Another Medication COMPOSE (GEP-NETs) ComPareNET Lu-177 vs CAPTEM in PNETs DLL3-Targeted RLT 225Ac-ABD147 to Establish Optimal Dose in Patients With SCLC and LCNEC of the Lung That Previously Received Platinum-based Chemotherapy

  • Aug2026 | NCF

    Join NCF for Aug2026. Explore event details, dates, times, and discover opportunities to connect, learn, and get involved. < Back to the upcoming events page https://www.youtube.com/watch?v=Q0-FP9sttoA Some Topics Covered: Neuroendocrine cancer, Neuroendocrine tumors (NETs), Patients, Caregivers, Endocrinology, Hormones, Quality of Life, Thyroid Disorders, Immunotherapy, Hormone Replacement Therapy, Testosterone Replacement, GLP-1 Medications, Symptom Management, Survivorship. For a primer on this topic, watch "The Latest in the Management of Functional Neuroendocrine Cancers." ABOUT When hormones are out of balance, the symptoms can have a significant impact on quality of life for people living with neuroendocrine cancer. In this Neuroendocrine Cancer Foundation (NCF) educational webinar, Dr. Jaydira Del Rivero, medical oncologist at the National Cancer Institute, explores how hormone excess, hormone deficiencies, and cancer treatments can affect the endocrine system—and what patients and caregivers should know. Topics covered include: How hormone excess and hormone deficiency can affect the body Hormone-related symptoms associated with neuroendocrine tumors Carcinoid syndrome vs. serotonin syndrome How immunotherapy may affect the pituitary, thyroid, adrenal glands, and pancreas Adrenal insufficiency and cortisol deficiency Thyroid dysfunction associated with cancer therapies Endocrine effects of tyrosine kinase inhibitors (TKIs) and somatostatin analogs Changes in blood glucose and insulin production Sex hormone changes during treatment Flushing related to carcinoid syndrome and menopause GLP-1 agonists in the setting of neuroendocrine tumors Symptoms and patterns patients should discuss with their healthcare team Warning signs that may require urgent medical attention The goal of this session is to help patients and caregivers recognize symptoms earlier, understand when hormone testing may be appropriate, and have more informed conversations with their oncology and endocrinology teams. This webinar is for educational purposes only and is not a substitute for medical advice. Please contact your healthcare team with questions about your individual diagnosis, symptoms, or treatment. ABOUT DR. JAYDIRA DEL RIVERO Jaydira Del Rivero, MD Medical Oncologist & Endocrinologist National Cancer Institute, National Institutes of Health Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center. Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors. She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology. Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials, and patient reported outcome measures. Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma. RESOURCES Click here for 24-Hour Urine Collection Instructions >>> THANKS TO OUR SPONSORS T he opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by the Neuroendocrine Cancer Foundation or the sponsors of this program. The Neuroendocrine Cancer Foundation does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments.

  • Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC) | NeuroendocrineCancer

    Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC) << Back Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC) CLINICALTRIALS.GOV IDENTIFIER: NCT05237934 PHASE: Observational STATUS: Recruiting* https://www.youtube.com/watch?v=J6T3Y94uJmo Dr. Jaydira Del Rivero Discusses Natural History Tissue Study: (NENs) and (ACC) Neuroendocrine neoplasm (NENs)are rare cancers arising from the neuroendocrine cells and can affect almost any part of the body. They vary from low grade neuroendocrine tumors (NETs) to high grade neuroendocrine carcinomas (NECs). These tumors often occur in the gastrointestinal tract, pancreas, lungs, adrenal medulla (pheochromocytomas) or adrenal cortex (adrenocortical cancer) and other areas of the body mentioned below: Gastroenteropancreatic neuroendocrine tumors (GEP-NET): stomach, duodenum, pancreas, colon, appendix, etc. Liver and gallbladder Adrenal tumors Pituitary gland Thyroid gland: medullary thyroid carcinoma Parathyroid tumors Pulmonary neuroendocrine tumors: typical and atypical carcinoid, small cell lung cancer (SCLC), large cell neuroendocrine carcinoma (LCNEC) Extrapulmonary small cell cancer Peripheral nervous system tumors: paraganglioma, neuroblastoma) Breast and genitourinary tract Their rates are rising in the United States and worldwide. Researchers want to learn more about NENs through this natural history study. OBJECTIVE: To study the natural history of people with NENs and obtain samples from them to learn more about the disease. The clinical management of all NETs is not standardized, with only a few FDA-approved therapies and we would like to learn which combination therapeutic approach should be used, how long treatment should be continued, and in what subgroup of NENs a particular treatment option should be used. ELIGIBILITY: People aged 18 and older who have or are suspected to have NENs or ACC. According to Dr. Del Rivero, this study will “give patients hope for new treatment options. Information from the study will be shared broadly with physicians. The goal of the study is to have a greater understanding of how NENs behave so we can develop new treatments that both improve patients’ quality of life and extend their lives.” For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. *NCI reimburses travel and lodging. Download reimbursement information in English. NCI Travel and Lodging Reimbursement Handout for Patients _9.23.2022 .pdf Download PDF • 121KB Download reimbursement information in Spanish. NIH-22-480 #7174 NCI Travel and Lodging Reimbursement Handout for Patients _9232022_Spanis .pdf Download PDF • 143KB CONTACTS: Jaydira Del Rivero, MD EMAIL: jaydira.delrivero@nih.gov

  • NCD2025 | NCF

    Join NCF for NCD2025. Explore event details, dates, times, and discover opportunities to connect, learn, and get involved. < Back to the upcoming events page WATCH THE RECORDING HERE Read highlights from the event in this blogpost >>> The 2025 NET Cancer Day Symposium was a collaboration between the Neuroendocrine Cancer Foundation and the Sylvester Comprehensive Cancer Center, part of UHealth – University of Miami Health System, in Miami, Florida, held on Sunday, November 9th. ABOUT Hear presentations from local NET experts and stories from those in the neuroendocrine cancer community. Learn about the latest in surgery, medical treatments, PRRT, symptom management, and clinical trials. Ask questions during the live question and answer sessions. Find out how you can spread awareness about neuroendocrine cancer. Post-Event Reception. This event is made possible by the generosity of donors and sponsors. SPEAKER BIOS LOCATION The Robert and Judi Prokop Newman Alumni Center 6200 San Amaro Dr., Coral Gables, FL 33146 AGENDA Download the program >>> *Subject to change. Please check back closer to the event for the most accurate agenda. Time Topic Speaker 8:30 - 9 AM Registration & Breakfast 9 - 9:10 AM Welcome Neuroendocrine Cancer Foundation Team & Dr. Aman Chauhan 9:10 - 9:25 AM Demystifying Clinical Trials Taymeyah Al-Toubah 9:25 - 9:40 AM Role of Surgery in NETs Dr. Jashodeep Datta 9:40 - 9:50 AM Liver-Directed Therapy Dr. Lindsay Thornton 9:50 - 10:10 AM Q&A Faculty; Moderated by Dr. Aman Chauhan 10:10 - 10:30 AM Break 10:30 - 10:45 AM Targeted Therapies & Chemotherapy Dr. Udhayvir Grewal 10:45 - 11 AM PRRT for NETs Dr. Boris Naraev 11 - 11:15 AM Managing Side Effects of Systemic Therapy Dr. Jason Starr 11:15 - 11:30 AM The Latest in Managing Carcinoid Syndrome Dr. Jason Starr 11:30 - 11:45 AM Role of Advocacy in Advancing Care for Neuroendocrine Cancer Dr. Estelamari Rodriquez 11:45 - 12:30 PM Q&A Faculty; Moderated by Dr. Aman Chauhan 12:30 - 1:30 PM Lunch 1:30 - 1:35 PM A NET Patient Journey Aramís Lorié 1:35 - 2:10 PM The Future of NETs: Emerging Therapies & Clinical Trials Dr. Aman Chauhan 2:10 - 2:30 PM Nutrition & Fitness in Cancer Tracy Crane, PhD, RDN 2:30 - 2:45 PM Documentary Trailer 2:45 - 3 PM Closing Neuroendocrine Cancer Foundation Team 3 - 4:30 PM Networking Reception with Live Music Presentation Slides 1_Altoubah.Taymeyah_Demystifying Clinical Trials .pdf Download PDF • 6.51MB 2_Datta-SurgeryNET-110925 Jashodeep Datta .pdf Download PDF • 2.40MB 3_Thorton.Lindsey_Liver Directed Therapy .pdf Download PDF • 1.95MB 4_Grewal_Role of Targeted Therapy & Chemotherapy .pdf Download PDF • 3.29MB 5_Naraev_PRRT for NETs .pdf Download PDF • 3.90MB 6_Starr.Jason_Managing Side Effects of Systemic Therapy_NCF .pdf Download PDF • 337KB 7_Starr.Jason_Carcinoid Syndrome .pdf Download PDF • 401KB 8_Rodriguez.Estelamari _Role of Advocacy in Advancing Care for Neuroendocrine Cancer_ .pdf Download PDF • 7.47MB The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by NCF or the sponsors of this program. NCF does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. THANKS TO OUR SPONSORS

  • DAREON™-7: DLL3 for Advanced Neuroendocrine Cancers | NeuroendocrineCancer

    DAREON™-7: DLL3 for Advanced Neuroendocrine Cancers << Back DAREON™-7: A Study to Test How Well Different Doses of BI 764532 in Addition to Chemotherapy Are Tolerated by People With Advanced Neuroendocrine Cancers IDENTIFIER ( ClinicalTrials.gov ) : NCT06132113 DRUG/TREATMENT : BI 764532, Carboplatin, Etoposide, Cisplatin PHASE : 1 STATUS : Recruiting SPONSOR : Boehringer Ingelheim https://www.youtube.com/watch?v=tSN7eS8fJPw DESCRIPTION: This study is open to adults aged 18 and older or above legal age who have a specific type of advanced neuroendocrine cancer (NEC). Their tumours must be positive for a marker called DLL3. The purpose of this study is to test a medicine called BI 764532 in addition to chemotherapy. The study has 2 parts. Part A of this study aims to find out the highest dose of BI 764532 that people can tolerate in addition to chemotherapy. The purpose of Part B is to find out how well people can tolerate BI 764532 in combination with different chemotherapies. Researchers also want to find out whether BI 764532 in combination with chemotherapy helps people with NEC. Participants get different doses of BI 764532 as an infusion into a vein. In addition, they get platinum-based chemotherapy as infusions into a vein. Participants can continue treatment up to 3 years if they benefit from treatment and can tolerate it. Participants visit their doctors regularly. During these visits, the doctors collect information about participants' health and take note of any unwanted effects. Doctors also regularly check the size of the tumour. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT: Boehringer Ingelheim EMAIL: clintriage.rdg@boehringer-ingelheim.com PHONE: 1-800-243-0127 This is a multicenter trial with various locations. Go to the “Contacts and Locations” section of this trial page at ClinicalTrials.gov for site-specific contact information. OTHER HELPFUL RESOURCES:

  • Episode 23: What to Know About Hindgut & Appendiceal NETs | NeuroendocrineCancer

    << Go back to the Podcast page EPISODE 23: WHAT TO KNOW ABOUT HINDGUT & APPENDICEAL NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE What are Hindgut NETs (distal colon and rectum) and how are they treated? How is rectal NET different from rectal cancer? What makes appendiceal NETs difficult to diagnose? Dr. Hagen Kennecke from Providence Cancer Institute in Portland, Oregon shares insights on the diagnosis and management of Hindgut NETs and appendix NET. MEET DR. HAGEN KENNECKE Dr. Hagen Kennecke is a Medical Oncologist and Medical Director of GI Oncology at Providence Cancer Institute and Associate Member of the Chiles Research Institute in Portland, Oregon. He has worked passionately to improve the treatment, education and outcomes of those affected by neuroendocrine tumors. Dr. Kennecke is an active clinician researcher, the recipient of numerous research awards and has authored numerous guidelines on the treatment of neuroendocrine tumors. He is a member of the US NCI GI Steering Committee and is a prior member of the NCI-NET Task Force, and has worked extensively within the neuroendocrine community including NANETS, Carcinoid Cancer Foundation, LACNETS and Healing NETS. TOP 10 QUESTIONS What are hindgut NETs? Where are they located? What are the different types of hindgut NETs? How are hindgut NETs found? What are the symptoms of a hindgut NET? What types of labs, scans, or testing is done to determine if someone has a hindgut NET? Could you discuss why people with appendix NET often have a challenging time getting a diagnosis. How is rectal NET different from rectal cancer? What are some ways that hindgut NETs differ from other types of NETs? What makes rectal NET unique? How do you decide if the hindgut NET(s) can be surgically removed? What type of surgeon would make that determination? There are people diagnosed with appendix NET who have been told by their doctor to have a hemicolectomy. What is your opinion about this? How are hindgut NETs treated medically or nonsurgically? How are treatments sequenced? How are the treatments different from other NETs? How are hindgut NETs monitored What types of bloodwork or tests should be done and how often should they be done? What is the best type of scan for hindgut NETs? What are clinical trials we should be aware of or exciting new treatments in the pipeline for hindgut NETs? And what words of hope would you like to share with the NET community? RESOURCES WATCH https://www.youtube.com/watch?v=2mfxKxBYdoY Bob Shares His NET Journey READ An Update on Appendiceal Neuroendocrine Tumor s Management of Appendix Neuroendocrine Neoplasms: Insights on the Current Guidelines - December 2022 Are Hemicolectomies Justified for Appendiceal Neuroendocrine Tumours Smaller Than 2 CM? Hemicolectomy Versus Appendectomy for Patients with Appendiceal Neuroendocrine Tumours 1-2 CM in Size: A Retrospective, Europe-Wide, Pooled Cohort Study NANETS Guidelines Library DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

  • Lu-177 DOTATATE + M3814 (Peposertib) in GEP-NETs | NeuroendocrineCancer

    Lu-177 DOTATATE + M3814 (Peposertib) in GEP-NETs << Back Testing the Addition of An Anti-cancer Drug, M3814 (Peposertib), to the Usual Radiation-Based Treatment (Lutetium Lu-177 Dotatate) for Pancreatic Neuroendocrine Tumors CLINICALTRIALS.GOV IDENTIFIER: NCT04750954 DRUG/TREATMENT: lutetium Lu-177 dotatate in combination with M3814 (peposertib) PHASE: 1b STATUS: Recruiting SPONSOR: National Cancer Institute (NCI) https://www.youtube.com/watch?v=2pfbNMs9sZA Dr. Aman Chauhan discusses Lu-177 Dotatate + M3814 DESCRIPTION: This phase Ib trial is to find out the best dose, possible benefits and/or side effects of peposertib when given together with lutetium Lu-177 dotatate in treating patients with neuroendocrine tumors. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT/Principal Investigator: Aman Chauhan, MD EMAIL: axc3268@med.miami.edu

  • Apr30 | NeuroendocrineCancer

    << Go Back to NCF Events Page “ Luncheon With The Experts ” is a recurring educational outreach series (previously hosted by the Carcinoid Cancer Foundation) aimed at patients, caregivers, and the broader neuroendocrine cancer community. The sessions are hosted by Rain Bennett. The series features medical specialists — oncologists, surgeons, researchers, and other clinical experts — in neuroendocrine cancer and answer audience questions live via chat. Programs are typically delivered live (over Facebook Live and YouTube Live ) at noon Eastern Time, allowing participants to join during their lunch break. Live sessions are recorded and will be available afterward. ABOUT JAYDIRA DEL RIVERO, MD Endocrinologist & Medical Oncologist National Institutes of Health Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center. Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors. She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology. Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials, and patient reported outcome measures. Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma. HOST The sessions are hosted by Rain Bennett , a two-time Emmy-nominated filmmaker, author, and experienced host who produces and leads live conversations on behalf of the Neuroendocrine Cancer Foundation. Bennett has been involved with the neuroendocrine cancer community as a longtime filmmaker and supporter, using his storytelling and interview skills to bring expert perspectives to patients and caregivers. THANKS TO OUR SPONSORS The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by NCF or the sponsors of this program. NCF does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. << Go Back to NCF Events Page

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