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Introducción NETs - La Presentación NETs de Elevador DescargarLa Tarjeta NET Intro La tarjeta NET Intro se puede completar digital o físicamente. (NOTA: Todos los recursos marcados con * están disponibles únicamente en Inglés) ¿QUÉ ES LA PRESENTACIÓN NETS DE ELEVADOR? La “Presentación NETs de Elevador” es una forma de presentarte. La razón por la que se llama de “Elevador" es porque debe ser lo suficientemente breve para poder decirla durante un viaje en elevador. Definimos una “Presentación NETs de Elevador” como una sinopsis de dos oraciones de tus NETs, que puedes comunicar en 30 segundos o menos. Si estuvieras en un elevador con un experto en NETs y solo tuvieras 30 segundos, la “Presentación NETs de Elevador” sería la introducción ideal, es concisa e ilustra claramente las características más importantes que se necesitan saber sobre tu condición. Esta es tu Introducción NETs, la mejor forma de presentar rápidamente el historial de tus NETs. La “Presentación NETs de Elevador” consta de dos oraciones y contiene la información descrita en las secciones 2 a 6, de la página 1 de NET VITALS. ORACIÓN #1: 1. Tu relación con NETs: Si vives con NETs, puedes comenzar la oración con: “Estoy viviendo con…”. “Me diagnosticaron…”. Si eres cuidador o ser querido de alguien que vive con NETs, puedes comenzar la oración con: “Mi cónyuge/hijo/padre/pariente/amigo/otro pariente vive con…”. “Mi cónyuge/hijo/padre/pariente/amigo/otro pariente fue diagnosticado con…”. Nota: Porque creemos que las palabras tienen poder, no aconsejamos identificarte como paciente o decir que estas enfermo. En su lugar, alentamos el uso de "Estoy viviendo con" o "Me diagnosticaron" o "Me diagnosticaron tal año con..." o incluso "Tengo...". Algunas personas incluso dicen "Estoy viviendo bien con..." porque da el mensaje de que las personas con NETs pueden tener una vida plena. 2. Diferenciación tumoral: Esto es "bien diferenciado" o "poco diferenciado". Se refiere a qué tan anormales se ven las células bajo el microscopio, en comparación con las células sanas circundantes 3. Grado del tumor: Puede ser grado 1, 2 o 3. El grado se refiere a la rapidez con la que se dividen las células tumorales. Si conoces tu ki-67 puedes agregarlo, ya que determina el grado del tumor. El ki-67 lo puedes encontrar en el reporte de patología, estos reportes se realizan cada vez que se extrae tejido de tu cuerpo, generalmente por medio de una biopsia o una cirugía. Es importante aclarar que el grado es diferente a la etapa o estadio, estas ultimas se refieren a qué tanto se ha desplazado el cáncer desde el sitio original del tumor. Es fácil confundir grado con etapa, pero en realidad dicen cosas muy diferentes. El público en general está familiarizado con la estatificación, porque es una forma común de describir un cáncer y da una idea de la prognosis de una persona. Sin embargo, es importante recordar que con el Cáncer Neuroendocrino, la etapa 4 no significa lo mismo que la etapa 4 de otros tipos de cáncer. Tenga en cuenta que los NETs pulmonares no están clasificados por grado, se clasifican en: Carcinoma Típico, Carcinoma Atípico, Carcinoma Neuroendocrino de Células Grandes y Carcinoma de Células Pequeñas. Los Feocromocitomas y los Paragangliomas tampoco se clasifican por grado. Vea esta infografía detallada* del podcast NETWise de NETRF sobre los NETs de pulmón Nuestros recursos de NETs de Pulmón se pueden encontrar aquí* NETWise Infographic Stage, Differentiation & Grade, courtesy of Neuroendocrine Tumor Research Foundation - Download Here 4. Estado funcional del tumor: Puede ser funcional o no funcional. Esto significa específicamente si los tumores producen hormonas (funcionales) o no producen hormonas (no funcionales) y no es indicación de la presencia de síntomas, ya que los síntomas pueden ser producidos por una variedad de razones. 5. Sitio de origen del tumor y metástasis: El sitio de origen es donde se origina el Tumor Primario y es el que define el tipo de NETs (NETs Pancreáticos (pNETs), NETs de Intestino Delgado, NETs de Pulmón, NETs de Colon, etc.) Metástasis es cualquier otro lugar (órgano diferente al Sitio Primario) en donde se encuentren mas tumores del mismo tipo que el Tumor Primario (por ejemplo en el hígado, los huesos, etc.) El sitio de origen será siempre el mismo, aún después de haber extirpado el tumor primario e incluso al no tener ya evidencia de la condición. Una de las razones por las que identificar el sitio de origen (Tumor Primario) es importante, es que le permite a tu equipo médico determinar y evaluar las opciones de tratamiento disponibles y aplicar las más adecuadas para cada caso. 6. Año en el que recibiste el diagnóstico. Este es opcional. ORACIÓN #2: La oración #1 es la base principal. Una vez que hayas dominado la oración #1, entonces (y solo entonces) estarás listo para agregar la oración #2. A la mayoría de nosotros nos resulta más fácil la oración #2 porque estamos familiarizados con los tratamientos y los procedimientos hemos recibido. La oración #2 consiste en eso, es un resumen breve de tus cirugías y tratamientos. La clave aquí es ser conciso. Estos son ejemplos de la oración #2: “A mi esposo lo operaron y le están dando un análogo de somatostatina (lanreotida u octreotida), terapia dirigida al hígado y PRRT” “Me hicieron una resección intestinal en Diciembre del 2022 y me están dando inyecciones Lanreotida, 120mg cada 28 días” ¡Ahí está! Tu historial en una breve Introducción NETs de dos oraciones, en 30 segundos o menos. Si bien puede parecer simple, sabemos que construir tu “Presentación NETs de Elevador” puede presentar ciertos retos. Además, se necesita algo de trabajo y práctica para poder pronunciar tu “Presentación NETs de Elevador” cómodamente. ¡Escríbela, tenla a mano y practica, practica, practica ! Mientras mas lo repitas, más cómodo te sentirás al decirlo y, en poco tiempo, lo podrás decir de una manera muy natural. ¿CUÁLES SON LOS BENEFICIOS DE APRENDER LA “PRESENTACIÓN NETS DE ELEVADOR”? Al aprender a "hablar NET" estarás en la misma página que un experto en NETs. Al decir tu “Presentación NETs de Elevador”, estás comunicando los elementos críticos que los expertos o tu equipo médico necesitan saber para tomar decisiones de tratamiento. Es importante que CONOZCAS Y COMPRENDAS TU CONDICIÓN y no dependas únicamente de tu equipo médico para eso. Aprender a hablar NET te ayuda a saber qué información o tratamientos son relevantes para tu caso. Al participar en reuniones educativas, podrás interpretar y entender mejor la información. Al buscar ensayos clínicos * , es posible que te ayude a determinar cuales son los mas apropiados para ti. Podrás comunicar los elementos esenciales de tus NETs de manera concisa, clara y eficiente. Comunicar los elementos críticos de la condición de una manera eficaz, nos permite tener una mejor utilización del tiempo y esto nos da una mejor oportunidad de hablar sobre tratamientos o de obtener respuestas a nuestras preguntas. Ya sea en un grupo de apoyo, con otras personas viviendo con NETs, con tu equipo médico o al conocer a un experto en NETs en una conferencia, la “Presentación NETs de Elevador” te ayudara a comunicar clara y eficazmente toda la información importante de tu condición, contenida también en tus NET VITALS*. ¿QUÉ NO DEBE ESTAR EN TU NET INTRO? Las palabras tienen poder. Desalentamos el uso de las palabras “Paciente” o “Enfermo” al referirnos a nuestra persona o a nuestros seres queridos. Preferimos el uso de palabras que empoderen y que muestren que nos vemos como personas completas y que no somos definidos por una enfermedad. Ten en cuenta que tu “Presentación NETs de Elevador’ no es lo mismo que tu historia. Hay momento y lugar para contar la historia de tu diagnóstico y de el impacto personal que ha causado. La “Presentación NETs de Elevador” no reemplaza tu historia, es una habilidad diferente, con un propósito diferente. ¡El conocimiento es poder! En esta montaña rusa, donde a veces podemos sentir que todo esta fuera de control, esto es algo que podemos controlar. Aprender tu “Presentación NETs de Elevador” te ayuda a comunicarte en el idioma de los expertos de NETs. Al cerrar las brechas de conocimiento y comprender los términos y conceptos fundamentales de NET, podemos ser mejores pacientes, cuidadores, promotores o defensores. ¡¡Crea tu “Presentación NETs de Elevador” y aprendamos juntos a hablar NET!! DescargarLa Tarjeta NET Intro La tarjeta NET Intro se puede completar digital o físicamente. *Original site translated by Michel DeQuevedo from NETs Mexico . Recursos Si no está seguro de lo qué significan los términos anteriores o de cómo encontrar la diferenciación, el grado o el ki-67 en su informe patológico, le recomendamos los siguientes recursos: Infografía NETWise de NETRF "Etapa, diferenciación y grado"* Episodio 1 del podcast NETWise de NETRF: Lo que tienes que saber sobre los NETs * Seminario web: NET VITALS (a partir de 14:20 minutos) * Seminario web de patología * a cargo de la Dra. Sue Chang (a partir de las 36:43) Video: Manejo de Síntomas * por la Dra. Del Rivero (habla de tumores funcionales y manejo del síndrome carcinoide) NOTA: NET Intro es un documento solo para uso personal. LACNETS no lo envía ni lo recopila. Es un documento que debe completar y llevar a su cita con el médico. Este documento está destinado únicamente a fines informativos y educativos y no reemplaza el asesoramiento médico profesional. Siempre consulte con su médico o proveedor de atención médica.

Lu-177 DOTATATE + Triapine in GEP-NETs << Back Phase 2 Trial: Testing the Effectiveness of an Anti-cancer Drug, Triapine, When Used With Targeted Radiation-based Treatment (Lutetium Lu 177 Dotatate), Compared to Lutetium Lu 177 Dotatate Alone for Metastatic Neuroendocrine Tumors DRUG/TREATMENT: LUTATHERA (Lu-177) + Triapine CLINICALTRIALS.GOV IDENTIFIER: NCT05724108 PHASE: 2 STATUS: Recruiting SPONSOR: National Cancer Institute (NCI) June 2024: Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine study April 2023: Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine study DESCRIPTION: This phase II trial compares the effect of adding triapine to lutetium Lu 177 dotatate versus lutetium Lu 177 dotatate alone (standard therapy) in shrinking tumors or slowing tumor growth in patients with neuroendocrine tumors that have spread from where they first started (primary site) to other places in the body (metastatic). Triapine may stop the growth of tumor cells by blocking some of the enzymes needed for deoxyribonucleic acid synthesis and cell growth. Lutetium Lu 177 dotatate is a radioactive drug. It binds to a protein called somatostatin receptor, which is found on some neuroendocrine tumor cells. Lutetium Lu 177 dotatate builds up in these cells and gives off radiation that may kill them. It is a type of radioconjugate and a type of somatostatin analog. Giving triapine in combination with lutetium Lu 177 dotatate may be more effective at shrinking tumors or slowing tumor growth in patients with metastatic neuroendocrine tumors than the standard therapy of lutetium Lu 177 dotatate alone. 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 RELATED RESOURCES Clinical Trials Using Lutetium Lu 177 Dotatate - NCI Dr. Chauhan's presentation slides can be downloaded here: Dr. Chauhan Presentation on Lu-177 DOTATATE + Triapine Trial .pptx Download PPTX • 16.18MB 2023 NANETS Abstract shows the combination of Triapine and Lu-177 DOTATATE was safe with preliminary efficacy signals.

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THE LACNETS PODCAST Special Episode: The LACNETS Story ABOUT THIS EPISODE: In this special episode, we share the history of LACNETS – the who, what, and when. We journey down memory lane with eight special guests from before the birth of LACNETS to where it is today. This episode is dedicated to Giovanna Joyce Imbesi, the LACNETS Founder, whose vision and dedication inspires us all. Listen now! Do you have a special memory of Giovanna and LACNETS? Share your story with us here. Photo Reel: LACNETS Over the Years Storytellers THANKS TO OUR SPONSORS

< Back to the upcoming events page Download the Transcript Here >>> Download the Presentation Slides Here >>> ABOUT Learn about PRRT from UCLA's Lead PRRT Nurse Linda Gardner. She addresses common questions about what to expect before, during, and after the treatment, as well as concerns about radiation safety. ABOUT LINDA GARDNER, MSN, RN, VA-BC LINDA (LINDY) GARDNER, MSN, RN, VA-BC Lead Nurse, Nuclear Medicine UCLA Health Lindy has over two decades of Interventional Radiology experience prior to transitioning over to Nuclear Medicine in March of 2017. She obtained her RN qualification in 1993 from John Moores University of Liverpool, (LJMU) United Kingdom, she is a graduate from the University Of Dundee, Scotland where she received her Bachelors, and Master’s of Science in Nursing. In her Nuclear Medicine role Lindy is the lead nurse for the Peptide Receptor Radionuclide Therapy (PRRT) program, from the expanded access program (EAP) through to the FDA approved commercial program. She has presented this program to a national and international audience; her skills are utilized as an expert liaison for institutions commencing the PRRT program, focusing on the patient experience, education, and therapy administration. Lindy is the nursing pillar lead for The International Center for Precision Oncology foundation (ICPO), with her focus on education, support and navigation for the NET patient journey. She is also the lead nurse for Radioligand Therapy (RLT) for prostate cancer within Theranostics at UCLA, covering both clinical application and research. Lindy is a member of the Association for Radiologic and Imaging Nursing (ARIN), and the Association for Vascular Access (AVA), holding her board certification in vascular access (VACC). She serves as a member of the Neuroendocrine Cancer Foundation Medical Advisory Committee and The Healing NET Scientific Advisory Committee. The 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 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

<< Go back to the Podcast page EPISODE 16: TOP 10 HIGHLIGHTS OF THE 2022 NANETS SYMPOSIUM Download a Transcript of this Episode >> ABOUT THIS EPISODE In this special episode, Dr. Will Pegna shares 10 new and exciting discoveries from the 2022 North American Neuroendocrine Tumor Society (NANETS) Multidisciplinary NET Medical Symposium. Each year, hundreds of medical professionals gather to share the latest in NET research and medical advances. LACNETS and Dr. Pegna discuss the Symposium highlights and why they matter to the NET community. MEET DR. GUILLAUME PEGNA Dr. Guillaume (Will) Pegna, MD is a Medical Oncologist at Oregon Health & Science University or OHSU in Portland, Oregon. Dr. Pegna specializes in the care of adults with cancers of the gastrointestinal (GI) and neuroendocrine systems (NETs). He is additionally interested and experienced in the management of rare tumors including pheochromocytomas, paragangliomas, and adrenocortical carcinomas. Dr. Pegna is actively involved with clinical trials and cancer research to improve survival and quality of life for cancer patients and to better understand the biology of these diseases. He specializes in the use of chemotherapy, immunotherapy, and multidisciplinary approaches to cancer care. Dr. Pegna finds it rewarding to help patients understand their disease, providing treatment options based on each individual patient, and supporting them through their treatment journeys. Dr. Pegna grew up in Upstate New York in a French-speaking family and goes by either Guillaume or Will, the English translation of his name. Outside of work, he enjoys hiking, ice hockey, and traveling with his family. TOP 10 HIGHLIGHTS OF THE 2022 NANETS SYMPOSIUM REFERENCES 10. Oral abstract presentation by Lindsay Hunter, MD, Huntsman Cancer Institute: "Circulating tumor DNA using a personalized, tumor-informed assay in metastatic well-differentiated gastroenteropancreatic neuroendocrine tumor patients." 9. Oral abstract presentation by Mehran Taherian, MD, MD Anderson: "High-grade Pancreatic Neuroendocrine Neoplasms: Interobserver Diagnostic Accuracy and Relationship with Clinicopathology and Molecular Characteristics." 8. Oral presentation by Aman Chauhan, MD, University of Kentucky Markey Cancer Center: “How to Define PRRT Refractory and Role of PRRT Repeat?” NET RETREAT: A Phase II RCT of Lu-177 DOTATATE Retreatment vs. Everolimus in Midgut NET Courtesy of Aman Chauhan, MD 7. Oral presentation by Jaume Capdevila Castillon, MD, PhD, Hospital Universitari Vall d’Hebron, Spain: “Novel TKIs for GEP NETs” Courtesy of Jaume Capdevila MD, PhD Poster presentation by Satya Das, MD: "E fficacy and Toxicity of Anti-Vascular Endothelial Growth Factors (VEGF) Receptor Tyrosine Kinase Inhibitors (TKIs) in Neuroendocrine Tumors (NETs) - A Systematic Review and Meta-Analysis." 6. Oral abstract presentation by Nancy Joseph, MD, PhD, University California, San Francisco: "TP53 Mutation Portends a Worse Overall Survival in Patients with Advanced Grade 3 Well-Differentiated Neuroendocrine Tumors." 5. Oral abstract presentation by Taymeyah Al-Toubah, MPH, Moffitt Cancer Center: "Phase 2 Study of Pembrolizumab and Lenvatinib in Advanced Well-Differentiated Neuroendocrine Tumors." 4. Oral abstract presentation by Eleonora Pelle, MD, Moffitt Cancer Center: "Development of a Novel Anti-SSTR Bispecific T-Cell Engager (BiTE)-like Molecule for the Treatment of Neuroendocrine Tumors." 3. Oral abstract presentation by Taymeyah Al-Toubah, MPH, Moffitt Cancer Center: "Risk of Myelodysplastic Syndrome/Acute Leukemia with Sequential Capecitabine/Temozolomide and 177Lu-Dotatate." 2. Oral abstract presentation by Brendon Herring, MS, University of Alabama at Birmingham School of Medicine: "Transcriptomic Influences of Racial Disparities in Black Patients with Pancreatic Neuroendocrine Tumors." Oral abstract presentation by Farhana Moon, Sr Clinical Research Analyst, UCSF, Helen Diller Family Comprehensive Cancer Center: "Variants of Uncertain Significance (VUS) are More Common in Non-Caucasian Patients with Neuroendocrine Neoplasms (NENs)." 1.Oral presentation by Dr Ebrahim Delpassand, Excel Diagnostics: "Early Data on 212Pb-DOTAMTATE (Alpha PRRT)" ABOUT NANETS The North American Neuroendocrine Tumor Society (NANETS) provides NET medical educational programming designed exclusively for medical professionals. While our Podcast only features 10 presentations from the NANETS October 27-29, 2022 Symposium, there are many more noteworthy abstracts found (or listed) here: Click here for NANETS Oral Abstracts Presentations Click here for NANETS Oral Abstracts in PDF format While NANETS does not provide direct patient education, patients may help further NET education of medical professionals by sharing the organization's educational meetings and NET guidelines with their providers. CLINICAL TRIAL INFORMATION Targeted Alpha-emitter Therapy of PRRT Naive Neuroendocrine Tumor Patients (ALPHAMEDIX02) Study of RYZ101 Compared With SOC in Pts With Inoperable SSTR+ Well-differentiated GEP-NET That Has Progressed Following 177Lu-SSA Therapy (ACTION-1) Testing Cabozantinib in Patients With Advanced Pancreatic Neuroendocrine and Carcinoid Tumors (CABINET) EXCEL Diagnostics (AlphaMedix, Alpha PRRT trial) RESOURCES "NET Medical Therapies" with Dr. Hecht (October 6, 2022) "Exciting Advances in NET Management: Cu64 DOTATATE & Alpha PRRT" with Dr. Ebrahim S. Delpassand 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

NET VITALS 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.

SVV-001 + Ipi-Nivo in Patients With Poorly Differentiated (NEC) or Well-Differentiated High-Grade (NET) << Back SVV-001 With Nivolumab and Ipilimumab in Patients With Poorly Differentiated Neuroendocrine Carcinomas (NEC) or Well-Differentiated High-Grade Neuroendocrine Tumors (NET) IDENTIFIER ( ClinicalTrials.gov ) : NCT06889493 DRUG/TREATMENT : Nivolumab and Ipilimumab PHASE : 1 STATUS : Recruiting SPONSOR : Aman Chauhan, MD Dr. Aman Chauhan at the Sylvester Comprehensive Cancer Center, University of Miami, discusses SVV-001 + Ipi-Nivo in Patients With Poorly Differentiated (NEC) or Well-Differentiated High-Grade (NET) tumors. Click here to download this transcript >>> DESCRIPTION: The purpose of this study is to determine: The highest dose of the trial intervention that targets neuroendocrine tumors and is tolerated by patients. The highest frequency of dosing of the trial intervention that targets neuroendocrine tumors and is tolerated by patients. The highest dose and frequency of dosing of the trial intervention that targets neuroendocrine tumors with at least the same degree of effectiveness and tolerability as currently available (standard of care) treatments for 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: Aman Chauhan, MD EMAIL: axc3268@med.miami.edu PHONE: 305-243-8173

SWOG S2012: Immunotherapy (Atezolizumab) + Standard Platinum Chemotherapy for NEC << Back SWOG S2012 - Evaluating the Addition of the Immunotherapy Drug Atezolizumab to Standard Chemotherapy Treatment for Advanced or Metastatic Neuroendocrine Carcinomas That Originate Outside the Lung CLINICALTRIALS.GOV IDENTIFIER: NCT05058651 DRUG/TREATMENT: Atezolizumab in combination with standard chemotherapy with a platinum drug (cisplatin or carboplatin) PHASE: II/III STATUS: Recruiting SPONSOR: National Cancer Institute (NCI) Dr. David Zhen Discusses SWOG S2012 Immunotherapy (atezolizumab) DESCRIPTION: This phase II/III trial compares the effect of immunotherapy with atezolizumab in combination with standard chemotherapy with a platinum drug (cisplatin or carboplatin) and etoposide versus standard therapy alone for the treatment of poorly differentiated extrapulmonary (originated outside the lung) neuroendocrine cancer that may have spread from where it first started to nearby tissue, lymph nodes, or distant parts of the body (advanced) or that has spread from where it first started (primary site) to other places in the body (metastatic). The other aim of this trial is to compare using atezolizumab just at the beginning of treatment versus continuing it beyond the initial treatment. Immunotherapy with monoclonal antibodies, such as atezolizumab, may help the body's immune system attack the cancer, and may interfere with the ability of tumor cells to grow and spread. Cisplatin and carboplatin are in a class of medications known as platinum-containing compounds that work by killing, stopping or slowing the growth of cancer cells. Etoposide is in a class of medications known as podophyllotoxin derivatives. It blocks a certain enzyme needed for cell division and DNA repair, and it may kill cancer cells. Giving atezolizumab in combination with a platinum drug (cisplatin or carboplatin) and etoposide may work better in treating patients with poorly differentiated extrapulmonary neuroendocrine cancer compared to standard therapy with a platinum drug (cisplatin or carboplatin) and etoposide alone. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here . CONTACT: 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. Principal Investigator: David B. Zhen, MD Southwest Oncology Group

Olaparib + Usual Chemotherapy (Temozolomide) in PPGL << Back Testing the Addition of an Anticancer Drug, Olaparib, to the Usual Chemotherapy (Temozolomide) for Advanced Neuroendocrine Cancer CLINICALTRIALS.GOV IDENTIFIER: NCT04394858 DRUG/TREATMENT: Olaparib and Temozolomide PHASE: 2 STATUS: Recruiting SPONSOR: National Cancer Institute (NCI) Dr. Jaydira Del Rivero Discusses TMZ vs TMZ Olaparib DESCRIPTION: This phase II trial studies how well the addition of olaparib to the usual treatment, temozolomide, works in treating patients with neuroendocrine cancer (pheochromocytoma or paraganglioma) that has spread to other places in the body (metastatic) or cannot be removed by surgery (unresectable). PARPs are proteins that help repair DNA mutations. PARP inhibitors, such as olaparib, can keep PARP from working, so tumor cells can't repair themselves, and they may stop growing. Chemotherapy drugs, such as temozolomide, work in different ways to stop the growth of tumor cells, either by killing the cells, by stopping them from dividing, or by stopping them from spreading. Giving olaparib with temozolomide may shrink or stabilize the cancer in patients with pheochromocytoma or paraganglioma better than temozolomide alone. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT: 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. PRINCIPAL INVESTIGATOR: Jaydira Del Rivero, MD Alliance for Clinical Trials in Oncology

<< Go back to the Podcast page EPISODE 40: NEN TREATMENTS: FOCUS ON EXTERNAL RADIATION THERAPY Download a Transcript of this Episode >>> ABOUT THIS EPISODE What is radiation oncology, and how is it used for neuroendocrine cancer? UCSF radiation oncologists Dr. Will Chen and Dr. Alexandra Hotca-Cho describe external radiation therapy (SBRT) and how, when, and where it may be used for select patients with neuroendocrine cancers. They address common concerns about the planning process, safety concerns, and treatment sequencing. MEET DR. WILLIAM C. CHEN Dr. William C. Chen is a radiation oncologist and translational researcher. Dr. Chen received his undergraduate degree from Johns Hopkins University and completed medical school at the University of California, San Francisco. He completed his internal medicine preliminary internship at Kaiser San Francisco, followed by a residency in Radiation Oncology at UCSF. He is a Chan Zuckerburg Biohub Physician Scientist Fellow and a Helen Diller Family Cancer Center Physician Scientist Program in Clinical Oncology (PSPCO) Fellow. His research focuses on biomarker development, informatics, and clinical trial development with a focus on meningiomas and other malignancies of the central nervous system and beyond. MEET DR. ALEXANDRA HOTCA-CHO Dr. Hotca specializes in treating gastrointestinal cancers, with expertise in advanced radiation therapy techniques such as intensity-modulated radiation therapy (IMRT), image-guided radiation therapy (IGRT), stereotactic body radiation therapy (SBRT), and respiratory gating. These approaches are designed to optimize treatment outcomes and minimize side effects. Her research focuses on enhancing patient quality of life through preventive strategies and identifying predictive biomarkers for radiation-induced toxicities. Dr. Hotca is dedicated to providing exceptional care to the diverse patient community at UCSF. TOP TEN QUESTIONS ABOUT EXTERNAL RADIATION THERAPY: 1. What is radiation oncology? How does it work? How is it different from other types of radiation? 2. What are the types of radiation therapies used for neuroendocrine cancer? 3. Which neuroendocrine cancers are they used for, and when are they used? How do you decide who is a good candidate and if it will be effective? Where in the body can SBRT be used? (bone, liver, pancreas, rectal?) Where can it not be used in the body, and when is SBRT NOT used? Is there a number or size limit of the tumor(s)? 4. For Bone: How do NETs affect the bones? Are they “on” or “in” the bone, and does the tumor tend to weaken it? If given to the bone, does SBRT weaken the bone? What are the chances of fracture with radiation to the bone? Does it matter which area of the bone/body is treated? What other factors influence fracture risk? (age, dose, number of treatments)? Should patients have a bone density scan before SBRT? If bone lesions are causing pain, how soon after treatment might a patient expect to have pain alleviated? How common is increased pain after treatment to the bone? What causes that? 5. Safety: How much radiation is given with these procedures? Is there a concern about radiation safety following the procedures? (Do patients need to avoid others in the hours or days after the treatment?) Is there a lifetime limit to the amount of radiation one can receive, especially considering surveillance CT & PET scans? How often can these procedures be repeated? Does it damage other tissues or organs? How common are secondary cancers? What types and how treatable are they? Is there a risk with fertility? What other risks are there? 6. How do these therapies compare to PRRT or radioembolization in terms of safety? If someone has had PRRT or radioembolization, can they also receive radiation therapy to the liver or bones? Is there increased risks if someone has had PRRT, radioembolization or CAPTEM or alkylating agents? 7. Is there an optimal sequence for treatments? 8. What is SBRT like for patients? What is the planning and preparation process? How do you determine how many treatments and what dose to give? 9. What does the patient experience during and after the procedure? Does it hurt? What are the side effects? How much time do I need to take off of work? 10. How effective is SBRT in terms of managing symptoms? How effective is SBRT in controlling or destroying the tumor? How do you know if the treatment “worked”? Bonus: What is the future of radiation therapy in neuroendocrine cancer treatment? RESOURCES READ Stereotactic Ablative Radiotherapy for the Management of Liver Metastases from Neuroendocrine Neoplasms: A Preliminary Study 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

< Back to the upcoming events page Learn about the latest in clinical trials for neuroendocrine cancer with NET expert Dr. Heloisa Soares, a medical oncologist at the Huntsman Cancer Institute (HCI) at the University of Utah. ABOUT DR. HELOISA SOARES Dr. Heloisa Soares is a medical oncologist who focuses on neuroendocrine cancers. She is an associate professor at the Huntsman Cancer Institute (HCI) at the University of Utah, where she is also the Medical Director for the Clinical Trials Office. Nationally, she serves as the NCI NET task force co-chair and the chair of the North American Neuroendocrine Tumor Society (NANETS) inaugural NET Patient Action Team of the NETPact Committee. She also recently served as a member of the directors for NANETS. Dr. Soares is a passionate advocate for patients. You can follow her on Twitter at @helops79. SPONSORS The information provided is for educational purposes only and does not substitute for medical advice. Talk to your medical team if you have any questions or concerns about your individual care and treatment. The opinions expressed in this program are those of the speakers and do not represent the opinion of LACNETS.