Our Team KAVYA VELAGAPUDI, MSW Executive Director and Board Member Kavya is the Executive Director and Board Member of the Neuroendocrine Cancer Foundation. Since 2015, Kavya has been involved with the organization providing fundraising and management support. She is a fundraising and management professional with 15 years of experience generating revenue and resources for various nonprofit organizations. With a Master's in Social Welfare and a concentration in Non-Profit Administration & Policy Advocacy, Kavya has a unique blend of development, management, and clinical skills. Before launching her independent fundraising consultancy Honu Fundraising, she was the Development Director of the International Museum of Women, now part of Global Fund for Women, in San Francisco. Before joining the Museum, Kavya was the Western Region Director of Starlight Children’s Foundation in Los Angeles overseeing all development, communications, and program services in Starlight’s Western Region. Contact: Kavya@NCF.net LISA YEN, NP, NBC-HWC Director of Programs & Outreach Lisa Yen was a nurse practitioner hospitalist for over 12 years prior to her husband’s diagnosis with advanced, metastatic pancreatic NET in January 2015. She brings a unique perspective to the Neuroendocrine Cancer Foundation as a medical professional and a caregiver. Once a regional support group, LACNETS has grown into a national NET patient advocacy group that now supports the Carcinoid Cancer Foundation, founded by Dr. Richard Warner. As the Director of Programs & Outreach, Lisa curates educational content for the Neuroendocrine Cancer Foundation’s virtual and in-person events, podcasts, annual conferences and symposiums, video resource library and Clinical Trials Guide. She facilitates patient and caregiver support groups and a support line. She has developed a peer mentorship program (NETCONNECT ), a health coaching program and wellness retreats . Lisa also co-created NET VITALS with LACNETS founder Giovanna Joyce Imbesi and City of Hope’s Dr. Daneng Li. In addition to developing content, Lisa attends national and international medical and scientific conferences to stay apprised of the latest in NET advances. She collaborates with NET experts, researchers, partners and patient advocates to improve access to education and care. Her passion is to help improve the quality of life for those affected by NET. Lisa was the recipient of the 2020 Monica Warner Award. She serves as treasurer on the executive board of INCA. She is a member of the NANETS NETPact Committee . Lisa earned a BA in psychology from Wheaton College in Illinois, a BSN from Loyola University of Chicago, and an MSN from UCLA’s School of Nursing’s Acute Care Nurse Practitioner Program. Through Vanderbilt, she became a Nationally Board-Certified Health and Wellness Coach (NBC-HWC) and is currently on the Vanderbilt and VA faculty, where she trains healthcare professionals and health coach trainees. Watch Lisa and her husband Tom describe how they made decisions in this 2017 LACNETS video. Contact: Lisa@NCF.net TAYMEYAH AL-TOUBAH, MPH, CCRP Interim Program Director Taymeyah Al-Toubah, MPH, CCRP, is an experienced clinical research professional with more than a decade of work in academic medicine, oncology, and neuroendocrine tumor research. She holds dual bachelor’s degrees in Biomedical Sciences and Psychology and a Master of Public Health in Epidemiology, where her thesis work led to one of her first publications in neuroendocrine tumors. NCF From 2018 to 2023, Taymeyah served as the primary neuroendocrine tumor coordinator at Moffitt Cancer Center, managing clinical trials, leading the GI research team, and supporting retrospective and non-interventional studies. She later became Senior Project Manager of the NET program, overseeing protocol development, database creation, manuscript preparation, and a master database of more than 10,000 NET patients. She has authored more than 45 manuscripts, presented at ENETS and NANETS, serves on the NANETS Board of Directors, and is a co-founder and member of the medical advisory committee of FLaNET Carcinoid Community. In 2025, Taymeyah began medical school in Italy as she continues her path toward becoming a physician-scientist focused on advancing care for people with neuroendocrine cancer. In 2026, she joined the Neuroendocrine Cancer Foundation in a special support role, contributing to NCF’s educational programs and resources for patients, caregivers, clinicians, and the broader NET community. HEATHER DAVIS Director of Community Engagement Heather Davis initially joined the Neuroendocrine Cancer Foundation as a NETCONNECT mentor for caregivers in 2019 after finding LACNETS to be an invaluable collective of medical resources, experts and caring support. Heather has nearly 20 years of account management experience in marketing. She has also served as her mother’s primary medical advocate since her pancreatic neuroendocrine cancer diagnosis in 2012. She earned her Bachelor’s Degree in Journalism/Advertising and Sociology from San Diego State University. As the Director of Community Engagement, she is eager to expand NET awareness and connect patients, caregivers and providers through this exceptional community. She is passionate that knowledge and collaboration make all the difference in both the quality of care and the quality of life for those affected by this rare disease. Heather enjoys learning and exploring new things with her nephews and having fun with family and friends. Contact: Heather@NCF.net BOARD OF DIRECTORS DONNA GAVIN Board President Donna Gavin is the sister of LACNETS founder Giovanna Joyce Imbesi and has been a board member of GeneratePossibility.org/LACNETS (now the Neuroendocrine Cancer Foundation) since 2009. Donna is dedicated to impactful work and has many years of experience in non-profit management and leadership. With a background in finance and law, she has served on boards and constituent groups of non-profit organizations for over 20 years. She is currently a senior grants administrator and paralegal at Cold Spring Harbor Laboratory on Long Island, New York, a scientific research institution and National Cancer Institute designated Cancer Center. Donna holds a BA from Williams College and a diploma in paralegal studies from New York University. MARY DONLEVY Board member Mary Donlevy joined the LACNETS Board in 2020. She brings the patient perspective as she has been thriving despite living with pancreatic neuroendocrine tumor since 2005. She has been close friends with LACNETS Founder Giovanna Joyce since 2010 and involved with LACNETS (now Neuroendocrine Cancer Foundation) since then. Mary has served as a NET CONNECT mentor and Advisory Committee member. She has been actively involved in the monthly meetings and virtual NET support groups. Mary received her Bachelor's Degree in Communications from University of San Diego and has over 10 years of medical and sales training. Her passion is to help those dealing with this difficult diagnosis and still enjoy a very full and active life. She is the mother of four children, two of which are identical twins, born after her cancer diagnosis. Mary enjoys ocean swimming, yoga and traveling with her husband and children in her free time.

Find travel and lodging assistance for neuroendocrine cancer patients, including transportation resources, free flights and temporary lodging options. Travel & Lodging Assistance for Neuroendocrine Cancer Patients Carcinoid Cancer Foundation - Lodging & Travel Resources Triage Cancer Financial Resources Including Travel Expenses and Lodging, Air Transportion and Ground Transportation TRAVEL RESOURCES PatientTravel.org or call 1-800-296-1217 Angel Flight Air Care Alliance Corporate Angel Network (Cancer Patients fly Free) LODGING Hope Lodge Homes that Help and Heal Hospitality Homes (Boston) Joe's House

<< Go back to the Podcast page EPISODE 24: WHAT TO KNOW ABOUT GRADE 3 WELL-DIFFERENTIATED NETS Download the transcript here: LACNETS Podcast Episode 23_Sonbol .pdf Download PDF • 203KB ABOUT THIS EPISODE What are grade 3 NETs and how is it different from grade 3 NEC and other types of NETs? Dr. Mohamad (Bassam) Sonbol from Mayo Clinic in Phoenix, Arizona, enlightens us on this fairly new entity, including treatment options, treatment sequencing and clinical trials. MEET DR. MOHAMAD BASSAM SONBOL Mohamad Bassam Sonbol, M.D., is an Oncologist, with special interest in neuroendocrine tumors and gastrointestinal malignancies. In addition to his clinical activities, Dr. Sonbol is active in research that focuses on investigating novel treatments including targeted therapies, immunotherapy, and other agents that could potentially help patients with neuroendocrine and gastrointestinal cancers. Dr. Sonbol focuses on the holistic treatment for cancer patients taking into consideration their medical and social aspects that have been affected by their cancer diagnosis. TOP 10 QUESTIONS What are grade 3 NETs? Where are they located? How is grade 3 NETs different from other types of NETs? In particular, how is it different from grade 3 NEC? Can NET change into NEC? How are grade 3 NETs found? How does one know it is grade 3? What types of labs, scans, or testing is done to determine if someone has a grade 3 NET? Can a grade 3 NET be surgically removed? How would you decide if, when, and how? How are grade 3 NETs treated medically (or nonsurgically)? How are treatments sequenced? How are the treatments different from other NETs? How are grade 3 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 grade 3 NETs? Can the tumors change in grade, Ki-67, and differentiation? What is the likelihood of NET changing to NEC and is there anything that can predict this or prevent this from happening? What are clinical trials we should be aware of or exciting new treatments in the pipeline for grade 3 NETs? What words of hope would you like to leave the NET community with? RESOURCES Click here for more resources for high-grade >> CLINICAL TRIALS MENTIONED IN THIS EPISODE CABINET: Cabozantinib in Advanced pNET and Carcinoid Tumors COMPOSE: PRRT with Lu-177 EDOTREOTIDE versus “Standard of Care” in Well-Differentiated Aggressive G2 & G3 GEP-NETS ComPareNET: Lu-177 DOTATATE vs CAPTEM in Advanced pNETs WATCH https://www.youtube.com/watch?v=awfXw_zCls0 NET Patient Kimberly shares her NET journey, including Dr. Sonbol's impact (mentioned in this podcast, but not a G3 NET patient) https://www.youtube.com/watch?v=DbrWzmLfRYQ NET Patient Denny shares his story of living with a G3 NET READ Management of Well-Differentiated High-Grade (G3) Neuroendocrine Tumors Treatment Outcomes of Well-Differentiated High-Grade Neuroendocrine Tumors Expert Consensus Practice Recommendations of the North American Neuroendocrine Tumor Society for the management of high grade gastroenteropancreatic and gynecologic neuroendocrine neoplasms in: Endocrine-Related Cancer Volume 30 Issue 8 (2023) Is There a Role for Surgical Resection of Grade 3 Neuroendocrine Neoplasms? 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

<< Go back to the Podcast page EPISODE 7: IMAGING OF NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE Confused about scans? NET expert Dr. Gary Ulaner answers the top 10 questions about imaging for NETs. Dual board-certified in radiology and nuclear medicine, Dr. Ulaner explains different scans used in NET imaging including functional imaging scans such as Gallium-68 DOTATATE, Copper-64 DOTATATE, and FDG PET scans and anatomical scans such as MRI and CT scans. He addresses common questions about radiation safety, contrasts, and SUV. MEET DR. GARY ULANER Gary A. Ulaner, M.D., Ph.D., F.A.C.N.M. is the Director of Molecular Imaging and Therapy at Hoag Family Cancer Institute. Dr. Ulaner was previously with Memorial Sloan Kettering Cancer Center, where he served as the PET/CT expert on the Breast Cancer Disease Management Team. Dual board-certified in radiology and nuclear medicine, Dr. Ulaner is a nationally recognized expert in the use of targeted imaging to help direct focused cancer therapies. He leads several National Institutes of Health (NIH) clinical trials in molecular imaging and therapeutics, including two active NIH R01 grants, and has received more than $8 million in extramural funding. Dr. Ulaner has received multiple honors throughout his career. He was elected Fellow of the American College of Nuclear Medicine, received an award for breast cancer research from the Susan Komen Foundation, and was the first Hal O’Brien Rising Star from the Society of Nuclear Medicine and Molecular Imaging (SNMMI), among other accolades. Dr. Ulaner has authored or co-authored more than 110 peer-reviewed manuscripts and has given more than 110 clinical presentations, both nationwide and internationally, in addition to writing the textbook Fundamentals of Oncologic PET/CT , published in both English and Spanish. He is also on the editorial boards of several leading clinical journals including: Radiology, Journal of Nuclear Medicine, European Journal of Nuclear Medicine and Molecular Imaging, and Clinical Nuclear Medicine. Dr. Ulaner completed his medical degree and a Ph.D. in Cancer Biology at Stanford University School of Medicine, an internship at Johns Hopkins Hospital, and his Radiology and Nuclear Medicine residencies at the University of Southern California. TOP 10 IMAGING QUESTIONS 1. What is the difference between a DOTATATE PET/CT scan and a FDG PET scan, or the type of PET scans that are commonly ordered for other types of cancers? 2. What is the difference between the Gallium-68 DOTATATE and the newer Copper-64 DOTATATE scans? What are the benefits of one over the other? Should I be getting a Copper-64 scan? 3. I’ve been hearing more about DOTATOC in the US where in the past I've only heard it from European specialists. What is it and are there advantages to DOTATOC vs. DOTATATE? 4. What do SUV values mean on DOTATATE PET Scans? 5. What is the difference between the CT scan in the DOTATATE PET/CT scan and a “regular” CT scan? 6. What type of CT scan should be done to evaluate NET? Should a CT scan be done with contrast? If so, what type of contrast? 7. What is the difference between MRI and CT scan? What type of MRI scan should be done to evaluate NET? Should a MRI scan be done with contrast? If so, what type of contrast? Regarding eovist - the contrast agent of choice, are all the gadolinium agents equal? 8. How concerned should patients be about radiation safety with CT scans, MRI scans, DOTATATE scans, and PRRT? 9. What do you suggest for those of us whose tumors don’t show up on scans? What scan(s) do you do if someone does not have uptake on Ga68 dotatate? What about those whose tumors don’t show up on any scans? 10. What suggestions do you have for patients who are trying to understand their scan report? 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. THANKS TO OUR SPONSORS

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 https://www.youtube.com/watch?v=dQ-xBFvXK1E 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. STUDY CONTACT Name: Peter Hosein, MD Phone Number: 1 (305) 243-3462 Email: PHosein@med.miami.edu STUDY CONTACT BACKUP Name: Nailet Real Bestard, MS Phone Number: 1 (305) 243-8173 Email: nxr518@med.miami.edu

Join NCF for TeamCraig. Explore event details, dates, times, and discover opportunities to connect, learn, and get involved. < Back to the upcoming events page BUY TICKETS OR SPONSOR Join Team Craig for a casual community gathering at a local brewery in support of the Neuroendocrine Cancer Foundation. Come enjoy great company, live music, refreshments, and community while supporting efforts to advance education, advocacy, and patient resources for those impacted by neuroendocrine cancer. Each ticket includes food and two drinks, plus a chance to connect with and support the neuroendocrine cancer community in a casual brewery setting. About Bodango Bodango is a versatile livetronica band out of Denver, Colorado, known for creating energetic, memorable live performances. Their sound brings together jam-band spirit, electronic influence, and a lively stage presence. https://www.bodangomusic.com/ Date Wednesday, July 1, 2026, 6 - 10 PM Location Ratio Beerworks - OVERLAND 2030 S Cherokee St. Denver, CO 80223 Street parking The Story Behind 'Team Craig' - Ben & John Adams In 2015 our father, Craig Adams, lost his battle to a form of Neuroendocrine Cancer (or NETs). We made a promise to him that we would always honor his legacy and give back to the community that fought so hard to give him 8 extra years with us. As many of you know, we put together a lacrosse team every year to compete in the Vail Shootout named after Craig. It is made up of friends and teammates that are united by the legacy of Craig and the passion for the game of lacrosse. What began as a tribute to our father has grown into a powerful tradition. Each year, players from across the country come together to compete at the highest level while honoring Craig’s memory and supporting a cause that affects more than 250,000 families in the United States alone. The team has quickly become one of the top competitors in the tournament: 2024: Third place finish 2025: Tournament champions 2026: Competing again with a renewed mission to raise awareness and funds But beyond the competition, the team’s greatest goal is simple: use the platform of lacrosse to make a meaningful impact for families facing cancer. This year, we are honored to take it one step further and dedicate our efforts to supporting the Neuroendocrine Cancer Foundation, helping expand awareness, education, and support for families affected by this complex and uncommon disease. Why We're Supporting the Neuroendocrine Cancer Foundation Neuroendocrine Cancer—including neuroendocrine tumors—is a complex and uncommon disease that can be difficult to diagnose and treat. Many patients experience years of misdiagnosis or undiagnosed symptoms. The Neuroendocrine Cancer Foundation works to change that by: Providing education and resources for patients and caregivers Increasing awareness and understanding of neuroendocrine cancers Connecting patients to experts, information on treatment options & clinical trials Supporting a community for those navigating diagnosis and care By partnering with the foundation, Team Craig hopes to ensure that more families have access to the knowledge, support, and providers who understand this complicated cancer. To learn more about neuroendocrine cancer, watch this short video. https://www.youtube.com/watch?v=xf-VTNRWHQg How You Can Help Your support helps turn a tournament into something much bigger. Ways to participate: Join us for great food and drinks, live music, exciting auction items, and an evening dedicated to making a difference for those impacted by cancer. Donate to support the Neuroendocrine Cancer Foundation Honor someone affected by cancer with a tribute donation Cheer on Team Craig Share this fundraiser with your network Every contribution—no matter the size—helps raise awareness and bring vital resources to families affected by neuroendocrine cancer. Thank you for being a part of Team Craig and making this game and our goal something greater. BUY TICKETS OR SPONSOR

NETTER-P: Lutathera in Adolescent Patients (12-17) with GEP-NETs and PPGLs << Back NETTER-P: Study to Evaluate Safety and Dosimetry of Lutathera in Adolescent Patients With GEP-NETs and PPGLs CLINICALTRIALS.GOV IDENTIFIER: NCT04711135 DRUG/TREATMENT: Lutetium [177Lu] oxodotreotide/dotatate PHASE: 1 STATUS: Recruiting SPONSOR: Advanced Accelerator Applications (AAA) UPDATE: Lutathera PRRT now approved for adolescents (12-17 year olds) On April 23, 2024, the Food and Drug Administration approved lutetium Lu 177 dotatate (Lutathera, Advanced Accelerator Applications USA, Inc., a Novartis company) for pediatric patients 12 years and older with somatostatin receptor (SSTR)-positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors. Lutetium Lu 177 dotatate received approval for this indication for adults in 2018. This represents the first FDA approval of a radioactive drug, or radiopharmaceutical, for pediatric patients 12 years of age and older with SSTR-positive GEP-NETs. Full prescribing information for Lutathera will be posted here . Read the complete FDA announcement here . Read the Novartis press release here . https://www.youtube.com/watch?v=Gg7_6kmiGvo Dr. Aman Chauhan Discusses "NETTER-P" Lutathera in Adolescent Patients DESCRIPTION: Advanced Accelerator Applications (AAA) is sponsoring a multicenter, open-label, single-arm study to evaluate the safety and dosimetry of Lutathera in adolescent patients 12 to <18 years old with somatostatin receptor positive GEP-NETs and PPGLs. The study will enroll at least 8 patients in the GEP-NET cohort and as many adolescents with PPGL as possible in the exploratory PPGL cohort. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT: Novartis Pharmaceuticals EMAIL: Novartis.email@novartis.com PHONE: 1-888-669-6682

Resources from our Partners AAA resources: Facts about PRRT, patient brochures, and contact information Click here for AAA Resources Ipsen resources: Patient brochures, copay information packet, SOMATULINE® DEPOT prescribing information packet, and contact information Click here for Ipsen Resources TerSera resources: Patient brochures, nurses patient brochure, nutrition guide & recipes for Carcinoid Syndrome, and contact information Click here for TerSera Resources RayzeBio resources: Clinical trial information, and contact information Click here for RayzeBio Resources Lantheus resources: Azedra patient brochure, Azedra Service Connection Patient Services brochure, and Azedra and Lantheus websites Click here for Lantheus Resources Crinetics Resources: Information about Patient Insights Program, Patient Leadership Council, and clinical trial information Click here for Crinetics Resources DISCLAIMER: These resources are for informational and educational purposes only and are not substitute for professional medical advice. This information is not intended to provide a medical professional’s opinion or advice. You are advised to seek appropriate licensed medical professional help. Please do not delay treatment based on this information. Talk to your medical team if you have any questions or concerns about your individual care or treatment.

<< Go back to the Podcast page EPISODE 43: CARCINOID HEART DISEASE Download a Transcript of this Episode >>> ABOUT THIS EPISODE What is Carcinoid Heart Disease (CHD)? Which NET patients develop CHD? Retired cardiologist and carcinoid heart disease specialist Dr. Jerome Zacks provides an overview on CHD and describes the appropriate screening, diagnosis, and treatment. MEET DR. JEROME ZACKS Dr. Jerome Zacks is a Cardiologist/Carcinoid Heart Disease Specialist; retired since December of 2021; but remain active as Associate Clinical Professor of Medicine at the Icahn Medical School at Mount Sinai in New York City and founding member of the Center for Carcinoid and Neuroendocrine Tumors at the Icahn Medical School at Mount Sinai; founder of the Carcinoid Heart Center; formerly on the Medical Advisory Board of the Carcinoid Cancer Foundation; currently head the Electrocardiography course for the 4th Year Medical Student elective at the Mt. Sinai Medical Center which has resulted in an international reputation among students seeking Cardiology training in the United States. He has expertise in matters of health care Insurance Carriers' theft of funds from the Medicare program, has studied patterns of abuse in the Medicaid program and has extensive knowledge of pharmaceutical company abusive practices. Dr Zacks continues to devote time to the care of patients with Carcinoid Heart Disease. He has served as a member of the Guidelines Committees of the European Neuroendocrine Tumor Society (ENETS) and of the North American Neuroendocrine Tumor Society (NANETS). He developed a new approach to compression stockings for patients with leg edema; he was granted a patent for this innovation. He has authored two national petitions urging Congress to mandate that any health care professional who uses one’s license, in making decisions which influence a patient’s care, be held to the SAME STANDARD OF CARE as the patient’s treating professional. (These two petitions were blocked by Senator Cory Booker.) In his role as patients’ physician, he has attempted to remove barriers of communication. His business card includes his personal mobile phone number as well as his email address and website information; He encourages patients to phone for immediate answers to urgent matters. Along with his wife, Yelena - an RN- they have devoted their professional lives to patients with heart disease from rare Neuroendocrine tumors. They have mentored 5 children, and are now learning from them and their 6 grandchildren have provided the real fuel and excitement for their lives. TOP TEN QUESTIONS ABOUT EXTERNAL RADIATION THERAPY: What is carcinoid heart disease (CHD) and what causes it to happen? Is CHD related to carcinoid symptoms? If my symptoms are uncontrolled, does this mean I might develop CHD? How concerned should I be about developing carcinoid heart disease? Which NET patients “get” CHD? Is it “inevitable”? Is it more common with NETs of the small bowel? Do those with NETs in the pancreas or other types of NETs ever get carcinoid heart disease? What are some of the signs and symptoms of carcinoid heart disease? How is it diagnosed? How does someone know if they have carcinoid heart disease? What is a heart murmur and how is it related to carcinoid heart disease? What is the appropriate testing for CHD? Are there blood tests that can or should be done? If someone is found to have neuroendocrine cancer (neuroendocrine tumor or NET) and CHD, what is the treatment approach? Which do you treat first and why? What is the treatment for CHD and how is this determined? If valve replacement is done, how many valves and which valves might be replaced? What type of valves are recommended? How is this done? What screening should be done for CHD and how often should someone get screened? How can I prevent CHD? What type of doctor(s) treat CHD? How do I know if I’m with a specialist? Bonus: What do you see as the future of CHD management and treatment? RESOURCES WATCH https://www.youtube.com/watch?v=DcewKhYm8uY https://www.youtube.com/watch?v=Y5PGL8-kFR4 https://www.youtube.com/watch?v=QnPR5hhQ7Dk https://www.youtube.com/watch?list=PLPAgUIq-85n9gMW_Majhts3lqzoIaIQbx&v=tMBDhGT5lmI READ CHD Guidelines & Articles: ENETS guidance paper for carcinoid syndrome and carcinoid heart disease Davar et al (2017) Diagnosing and Managing Carcinoid Heart Disease in Patients With Neuroendocrine Tumors: An Expert Statement. J Am Coll Cardiol.; 69 (10) 1288–1304 Jin et al (2021) Carcinoid Heart Disease: Pathophysiology, Pathology, Clinical Manifestations, and Management. Cardiology;146:65–73 Ram et al (2019) Carcinoid Heart Disease:Review of Current Knowledge. Texas Heart Institute Journal February 2019, Vol. 46, No. 1 Additional Resources: Xermelo or Telotristat Ethyl Interscience Institute provides NET Diagnostic Testing including pancreastatin and serotonin. DISCLAIMER The Neuroendocrine Cancer Foundation 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 the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

Medical Advisory Council ABOUT MAC Our Medical Advisory Council (MAC) consists of distinguished neuroendocrine cancer experts committed to improving the lives of NET patients through multidisciplinary patient care, scientific research, and peer and patient education. Together, we aim to improve access to expert care, critical information, and groundbreaking medical treatments. MEET OUR COUNCIL CALLISIA CLARKE, MD Chief of MCW Surgery, Medical College of Wisconsin Dr. Clarke is Chief of Surgical Oncology and Associate Professor of Surgery at the Medical College of Wisconsin with a focus on tumors of the upper gastrointestinal tract, sarcomas, melanomas and regional therapies for advanced malignancies. She specializes in hepato-pancreatic-biliary malignancies, primary and metastatic neuroendocrine tumors, melanoma and sarcoma. Her research efforts focus on personalized cancer care and targeted approaches in pancreatic neuroendocrine tumors. Dr. Clarke also serves on the Executive Committee of the Association for Academic Surgery and is the Chair of the North American Neuroendocrine Tumor Society (NANETS) Mentoring and Early Career Development Committee. In 2024 President Biden announced her appointment as a Member of the National Cancer Advisory Board. Dr. Clarke plays a key role in guiding the Director of the National Cancer Institute in setting the course for the national cancer research program and helping advance breakthroughs to prevent, detect, and treat diseases like cancer. JAYDIRA DEL RIVERO, MD Endocrinologist, Oncologist, National Cancer Institute 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. ALEXANDRA GANGI, MD Division Director of Surgical Oncology, Cedars-Sinai Medical Center Dr. Alexandra Gangi is a board-certified surgical oncologist at Cedars-Sinai Medical Center in Los Angeles. Dr. Gangi completed a general surgical residency at Cedars-Sinai and completed her surgical oncology fellowship at the H. Lee Moffitt Cancer Center in Tampa, Florida. She currently serves as the Division Director of Surgical Oncology and Director of the Gastrointestinal Tumor and Cancer Regional Therapies Programs with specialization in Pancreatic and GI Neuroendocrine tumors, Metastatic colorectal cancer, and Peritoneal Surface Malignancies. Her research focuses on understanding GEPNET heterogeneity between and within tumors subtypes and mechanisms of chemotherapy induced liver injury. 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) thru 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 Radio-Ligand 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 sits as a member on The Healing NET Scientific Advisory Committee. J. RANDOLPH HECHT, MD Medical Oncologist, UCLA Health Dr. Hecht is a Professor of Clinical Medicine in the David Geffen School of Medicine at UCLA School of Medicine. He holds the Carol and Saul Rosenzweig Chair for Cancer Therapies Development and is the Director of the UCLA Gastrointestinal Oncology Program. Dr. Hecht attended medical school at Eastern Virginia Medical School. He took his internal medicine residency at Northwestern and completed fellowships in gastroenterology research at the University of Chicago, and in gastroenterology and medical oncology at UCLA. Dr. Hecht is an internationally known clinical and translational researcher in the field of gastrointestinal cancers. He has published widely on the molecular biology, early detection, and treatment of gastrointestinal malignancies. He has lead and is currently directing small trials with new molecules as well as large international randomized trials. Current ongoing research includes preclinical models of therapy with biological agents, early studies with gene therapy vectors and tyrosine kinase inhibitors, and leading phase II and phase III trials with novel agents. ANDREW HENDIFAR, MD Medical Oncologist, Cedars-Sinai Medical Center The current research focus of Andrew Hendifar, MD, is on developing new therapies for pancreatic cancer and neuroendocrine tumors. Dr. Hendifar has helped form multidisciplinary teams that specialize in the treatments of pancreatic cancer, and carcinoid and neuroendocrine tumors. Dr. Hendifar is the primary investigator for several groundbreaking therapies, including radioimmunotherapy for neuroendocrine tumors, anti-inflammatory therapy for pancreatic cancer and novel approaches to cancer cachexia. His national roles include SWOG GI Committee Member and a member of NIH Neuroendocrine Tumor Task Force. He also serves on the steering committee member for the Precision Promise Consortium and chairs the associated Supportive Care Committee. At Cedars Sinai he leads the Gastrointestinal Disease Research Group and is the founding Director of the Hematology and Oncology Fellowship Program. DANENG LI, MD Medical Oncologist, City of Hope Daneng Li, M.D., is an associate professor in the Department of Medical Oncology & Therapeutics Research at City of Hope Comprehensive Cancer Center, specializing in treating gastrointestinal cancers. Dr. Li currently leads the liver tumors program and is also the co-director of the Neuroendocrine Tumor Program at City of Hope. Dr. Li embraces a multidisciplinary approach to treatment of patients with neuroendocrine tumors. He leads several clinical trials focused on improving outcomes for patients with NETs and works closely with scientists in the development of the next generation of novel therapeutics. Nationally, he has served on several NET committees including the NANETS Research Committee, NANETS Continuing Medical Education Committee, and the Patient-Physician Communication Task Force for the Healing NET Foundation, allowing him to work closely to support NET patient advocacy programs. For all his efforts, he was honored as a recipient of the inaugural 40 Under 40 in Cancer Award during the American Society of Clinical Oncology annual meeting in 2018.

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) https://www.youtube.com/watch?v=3YGASJXkSxI 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

<< 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 afterwards. ABOUT BORIS G. NARAEV, MD, PHD, FACP Dr. Naraev is a board-certified medical oncologist at the Tampa General Hospital’s Cancer Institute specializing in caring for people living with neuroendocrine and endocrine tumors. He is an Associate Professor of Medicine at the Division of Hematology and Medical Oncology of University of South Florida, Morsani College of Medicine. Prior to joining the TGH Cancer Institute, he was the Lead of Neuroendocrine Cancer Program at Banner MD Anderson Cancer Center in Phoenix, Arizona and Adjunct Assistant Professor with the Department of Gastrointestinal Medical Oncology at The University of Texas MD Anderson Cancer Center, Houston, Texas. While in Phoenix, he helped create, develop, and lead one of the largest neuroendocrine cancer programs in the Southwestern United States, and was personally taking care of a large population of patients with neuroendocrine tumors. Later, he served as the Leader of Gastrointestinal, Neuroendocrine, and Rare Cancers Program at the Anderson Family Cancer Institute at Jupiter Medical Center in Jupiter, Florida. In this capacity, he helped build the National Pancreas Foundation Pancreatic Cancer Center of Excellence at Jupiter Medical Center. He received his Doctor of Medicine degree from Orenburg State Medical Academy in Orenburg, Russia. Subsequently, he obtained a PhD in Medical Sciences degree from the same institution. After completion of Internal Medicine residency training at St. Luke's Hospital in Chesterfield, Missouri, he proceeded to complete Hematology/Oncology Fellowship at the University of Iowa Hospitals and Clinics in Iowa City, Iowa. During his fellowship training, he developed a special interest in neuroendocrine tumors and completed several research projects in this field. Dr. Naraev is involved in neuroendocrine tumors related research and community outreach, and is a member of the NETPact Committee and Chair of the Guidelines Committee of the North American Neuroendocrine Tumor Society (NANETS). Dr. Naraev also serves as a member of the National Cancer Institute’s Neuroendocrine Tumors Task Force. 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