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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* 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

DAREON™-9: DLL-3 BiTE + Topotecan in Small Cell Lung Cancer (SCLC) << Back DAREON™-9: A Study to Test How Well Different Doses of BI 764532 Are Tolerated by People With Small Cell Lung Cancer When Taken Together With Topotecan IDENTIFIER ( ClinicalTrials.gov ) : NCT05990738 DRUG/TREATMENT : BI 764532 (DLL3/CD3 bispecific antibody) + Topotecan PHASE : 1 STATUS : Recruiting SPONSOR : Boehringer Ingelheim DESCRIPTION: Dr. Aman Chauhan at Sylvester Comprehensive Cancer Center, University of Miami discusses the DAREON™-9: DLL-3 BiTE + Topotecan in Small Cell Lung Cancer (SCLC) . Recorded: June 20, 2024 Boehringer Ingelheim is sponsoring a phase 1 study, a phase 1 trial studying BI 764532 , an antibody-like molecule (DLL3/CD3 bispecific or “BiTE”) that may help the immune system fight cancer. The study is in adults with extensive stage small cell lung cancer who have previously received platinum-based chemotherapy and are eligible to receive topotecan treatment. The purpose of this study is to find out the highest dose of BI 764532 that people can tolerate when taken together with topotecan, a chemotherapy treatment called topoisomerase 1 inhibitor, that works by blocking a chemical (topoisomerase 1) that helps cancer cells repair and separate DNA when they divide. Participants get BI 764532 and topotecan as infusions into a vein. As an alternative, topotecan may also be taken orally (tablets). 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

DAREON™- 5: DLL-3 BiTE for Neuroendocrine Cancers << Back DAREON™ 5: DLL-3 BiTE for Neuroendocrine Cancers IDENTIFIER ( ClinicalTrials.gov ) : NCT05882058 DRUG/TREATMENT : BI 764532 PHASE : 2 STATUS : Recruiting SPONSOR : Boehringer Ingelheim DESCRIPTION: Boehringer Ingelheim is sponsoring DAREON™ -5, a phase 2 trial studying BI 764532, an antibody-like molecule (DLL3/CD3 bispecific) that may help the immune system fight cancer. It is open to adults with small cell lung cancer and other neuroendocrine cancers including extra-pulmonary neuroendocrine carcinoma and large cell neuroendocrine carcinoma. The purpose of the study is to find a suitable dose of BI 764532. 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

<< Back NIH/NCI Natural History Study for Neuroendocrine Neoplasms Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs) Including Adrenocortical Carcinoma (ACC)

Belzutifan/MK-6482 in PNET + PPGL + VHL << Back Belzutifan/MK-6482 for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), Von Hippel-Lindau (VHL) Disease-Associated Tumors, Advanced Gastrointestinal Stromal Tumor (wt GIST), or Solid Tumors With HIF-2α Related Genetic Alterations (MK-6482-015) CLINICALTRIALS.GOV IDENTIFIER: NCT04924075 DRUG/TREATMENT: Oral Treatment: Belzutifan PHASE: 2 STATUS: Recruiting SPONSOR: Merck Sharp & Dohme LLC Dr. Hendifar Discusses Belzutifan in PNET + PPGL + VHL DESCRIPTION: Merck is sponsoring a phase 2 trial for those with pheochromocytoma/paraganglioma (PPGL) or Pancreatic Neuroendocrine Tumor (pNET), or Von Hippel-Lindau (VHL) who have progressed in the past 12 months. Those with pNET must have experienced disease progression on or after at least 1 line of prior systemic therapy that includes an approved targeted agent such as everolimus or sunitinib. Belzutifan is a daily, oral medication currently approved for the treatment of von Hippel–Lindau disease-associated renal cell carcinoma. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT: Merck Sharp & Dohme LLC EMAIL: Trialsites@merck.com PHONE: 1-888-577-8839 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.

<< Go back to the Podcast page EPISODE 32: FOCUS ON SOMATOSTATIN ANALOGUES (SSAs) Download a Transcript of this Episode >>> ABOUT THIS EPISODE How do SSAs work? Should all NET patients be on one? What are the side effects? Dr. Edward Wolin from Mount Sinai Health System answers several common questions about the current and future role of somatostatin analogues in NET treatment. MEET DR. EDWARD M. WOLIN Professor of Medicine, Medical Oncology, Icahn School of Medicine Director, Center for Carcinoid and Neuroendocrine Tumors Tisch Cancer Institute, Mount Sinai Health System Dr. Edward M. Wolin is an internationally renowned authority on neuroendocrine tumors. Dr. Wolin is the Director of the Center for Carcinoid and Neuroendocrine Tumors at the Tisch Cancer Institute at Mount Sinai and Professor of Medicine, Medical Oncology at the Icahn School of Medicine at Mount Sinai. The multidisciplinary Center for Carcinoid and Neuroendocrine Tumors features a robust research program with clinical trials aimed at finding the most effective treatments, including immunotherapy, biologic agents, targeted radiation therapy, and new approaches in molecular imaging for diagnosis. Dr. Wolin has pioneered innovative therapies with novel somatostatin analogs, mTOR inhibitors, anti-angiogenic drugs, and peptide receptor radiotherapy. Prior to joining Mount Sinai, Dr. Wolin was Director of the Neuroendocrine Tumor Program at Montefiore Einstein Cancer Center. Previously, he worked for more than two decades with Cedars-Sinai Medical Center in Los Angeles, where he founded and directed one of the largest Carcinoid and Neuroendocrine Tumor Programs in the country, and subsequently directed the Neuroendocrine Tumor Program at University of Kentucky. Dr. Wolin is also the Co-Medical Director for the Carcinoid Cancer Foundation and is on the Carcinoid Cancer Research Grants Scientific Review Committee for the American Association for Cancer Research. He has published in many prestigious journals, including the New England Journal of Medicine and Journal of Clinical Oncology, and is a reviewer for numerous journals, including Journal of Clinical Oncology, Molecular Cancer Therapeutics, Clinical Cancer Research, and The Lancet Oncology. During Dr. Wolin’s two decades at Cedars-Sinai Medical Center in Los Angeles, he developed a close friendship with LACNETS founder Giovanna Joyce Imbesi. Dr. Wolin was instrumental in the co-founding and development of LACNETS. LACNETS has always been very dear to his heart and he cherishes and honors the memory of Giovanna. Dr. Wolin earned his medical degree from Yale School of Medicine. He completed both his residency in internal medicine and fellowship in medical oncology at Stanford Un iversity Hospital. He was also a clinical fellow at the National Cancer Institute of the National Institutes of Health. Dr. Wolin is board certified in internal medicine and medical oncology. TOP TEN QUESTIONS ABOUT SOMATOSTATIN ANALOGUES (SSAs) FOR NETS: (1) What are somatostatin analogues (SSAs)? How do they work? (2) When and how are SSAs used? (3) Which SSA should a patient be on? What is the difference? How do you decide? Do SSAs shrink tumors? (4) How do you know if a SSA will be helpful? Should ALL NET patients be on a SSA? (5) What about patients whose tumors don’t “light up” on a DOTATATE scan? (6) H ow long can someone stay on a SSA? Do SSAs stop working after a period of time? Do people develop a “resistance” to the medication? (7) What side effects may patients experience from the shot? What can patients do to prevent or manage these symptoms? How might it affect one’s day-to-day ability to work and function? Can I live a “normal life” while taking this medication? Many patients complain of diarrhea after getting the shot. What might you recommend to prevent or manage diarrhea from the injection? I’ve heard SSAs cause issues with the gallbladder. Could you explain more about the possible correlation? Do SSAs cause diabetes? Many patients note soreness after getting the shot. What might you recommend to prevent soreness from the injection? (8) If the tumor is growing does this mean the SSA did not work? Do you continue it when patients are treated with another treatment? When do you stop a SSA? (9) What is the future of SSAs? I heard there is a pill that is available in a clinical trial. Can I take a pill instead of getting the injection? (10) What words of hope do you have for the NET community? RESOURCES READ Lanreotide + Octreotide Resources LACNETS Blog Post - "A Focus on Somatostatin Analogs (Your Monthly Shots)" LACNETS Blog Post - "The Shot" LACNETS Blog Post - "Practical Tips for Patients on the Shot Somatostatin Analog" Somatostatin Analogue (SSA) Clinical Trials 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 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 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

<< Go back to the Podcast page EPISODE 10: PRRT (PART III) Download a Transcript of this Episode >> Listen to Episode 8: PRRT (Part One) with Administrative Nurse Lindy Gardner of UCLA Health >> Listen to Episode 9: PRRT (Part Two) with the Director of Nuclear Medicine of UCLA Health >> ABOUT THIS EPISODE How can patients make decisions about where, when, and what kind of PRRT to receive? How does PRRT in the USA differ from other parts of the world? Why does each institution have different post-PRRT radiation safety precautions? What is the patient experience with traveling after PRRT? Internationally recognized patient advocate and President of NorCal CarciNET Community, Josh Mailman, answers ten common questions about the past, present, and future of PRRT. Josh, whose journey has taken him from PRRT recipient to a seat on the Nuclear Regulatory Commission Advisory Committee, shares from his years of patient advocacy work in nuclear medicine and clarifies some misunderstandings about PRRT. MEET JOSH MAILMAN, MBA Josh Mailman was diagnosed with PNET in 2007. Josh is an internationally recognized advocate for NET patients as well as an advocate for integrative oncology and nuclear medicine and molecular imaging. He is the inaugural chair of the Society of Nuclear Medicine and Molecular Imaging’s (SNMMI) Patient Advocacy Advisory Board, a member of The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) Board, acting COO the World Association of Radiopharmaceutical and Molecular Therapy (WARMTH), and president of NorCal CarciNET Community, one of the largest NET patient communities in the United States. In addition, he is a member of National Cancer Institute’s GI Steering Committee after being a member of the NCI Task Force on Neuroendocrine Tumors for seven years. Josh is also a member of the Board of Directors and Executive Committee of the Neuroendocrine Tumor Research Foundation(NETRF). He sits as the single patient member of NETRF's Scientific Advisory Committee which reviews research applications for private funding by this 501c3 foundation. In 2015, Josh was honored with the Warner Advocacy Award, given annually by Novartis Oncology Patient Advocacy and The NET Alliance. The award recognizes an individual for leadership and advocacy for neuroendocrine patients. In the same year, Josh was given the SNMMI’s President’s Award for his work on behalf of patients in the nuclear medicine field. Josh is a former executive board member of the Society for Integrative Oncology (SIO)and was named SIO Patient Advocate of Year in 2010. Josh is a frequent and sought-after speaker for his passionate and highly informed perspective on how patients can effectively participate in the process of working with key stakeholders to improve treatments and advance progress for better quality of life and eventual cures. TOP 10 PRRT QUESTIONS 1. PRRT was available for years outside the USA before it was available here. Why did it take so long before PRRT was available in the US? 2. How does PRRT differ in the USA versus in Europe and other parts of the world? 3. Why is PRRT so much more expensive in the US vs other places in the world? Is it covered by insurance / for lung NETS? 4. Now that Lutathera is more widely available, how does one go about deciding where to get treatment? (Does it matter if I get it locally vs a “NET center?”) / Does it matter where you go to receive your PRRT treatment? (Do I need to be going to a NET center to receive PRRT treatment?) 5. Some people are told they can only receive 4 doses of PRRT in their lifetime. What are your thoughts about this? Do we always need 4 treatments? / How might patients decide when to have repeat PRRT versus having another type of PRRT or another treatment? What might you need to consider as a patient and advocate? 6. What is the patient experience regarding traveling after PRRT? (Do I need to worry about setting off security alarms at airports? What about other security alarms such as at event venues or courthouses?) 7. How might patients go about deciding between various PRRT options (i.e. alpha versus beta)? What might you consider as a patient and as an advocate? 8. Some people are told that PRRT should be saved as a “last resort.” How would you respond? 9. What is your role as a member of the Nuclear Regulatory Commission’s Advisory Committee on the Medical Use of Isotope? 10. Talk a little bit about the release criteria and radiation safety precautions following Lutathera. Why is there a range of what patients are told? How does the process & procedure of radiation safety in the USA differ in the USA vs Europe and other parts of the world? ADDITIONAL RESOURCES Read the LACNETS Blog Post "These Four Letters: PRRT" >> Click here for additional PRRT Resources >> 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 19 - BEYOND THE BASICS: THE PATHOLOGY OF NET Download a Transcript of this Episode >> ABOUT THIS EPISODE Take a glimpse through the microscope and learn how pathology determines your NET diagnosis and guides treatment. How does one interpret differing Ki-67 results from the same specimen? Why might a patient have two different Ki-67 results from different specimens? How does pathology distinguish G3 well-differentiated NET from NEC? How does pathology help with NET tumors of unknown origin? NET pathologist Dr. Andrew M. Bellizzi from the University of Iowa sheds light on just how much information a tiny tissue sample may contain. MEET DR. ANDREW M. BELLIZZI Andrew M. Bellizzi, M.D. is a Clinical Professor in the Department of Pathology at the University of Iowa. Dr. Bellizzi completed undergraduate work in Anthropology and Science Preprofessional Studies at the University of Notre Dame (‘00) and received his medical degree from Northwestern University (‘04). Following combined training in Anatomic and Clinical Pathology at the University of Virginia (‘08), he completed a fellowship in Gastrointestinal and Liver Pathology at The Ohio State University (‘09). After two years as a junior faculty at Brigham and Women’s Hospital, he moved to Iowa in the Fall of 2011. Dr. Bellizzi is the Director of Immunohistochemistry, GI Pathology, and the GI Pathology Fellowship at the University of Iowa. He is an active member of the United States and Canadian Academy of Pathology, the American Society of Clinical Pathology, and the College of American Pathologists, including servingas the immediate past Chair of the USCAP Stowell-Orbison Award and the CAP Immunohistochemistry Committees. He is the Secretary-Treasurer of the International Society for Immunohistochemistry and Molecular Morphology and is an Associate (Reviews), Section (Immunohistochemistry), and Assistant Editor(GI pathology) of Applied Immunohistochemistry and Molecular Morphology, Archives of Pathology and Laboratory Medicine, and the American Journal of Clinical Pathology, respectively. Dr. Bellizzi’s research interests include the diagnosis, classification, and etiopathogenesis of human disease, with an emphasis on gastrointestinal, pancreatic, neuroendocrine, and hereditary tumors. His research program focuses on applications of diagnostic immunohistochemistry. Outside of the office, Andrew enjoys “getting into trouble” with his 14 and 16- year-old boys, Aidan and Darby. In addition to “very special stains,” he also loves hiking, cooking, craft beer, Notre Dame football, the Boston Red Sox, and the Oxford comma. TOP 10 QUESTIONS 1. What is Oncopathology? 2. What is immunohistochemistry, and what do patients need to know about it? 3. What is your opinion when you see that there are differing Ki-67 of the same tumor specimen? For example, one institution reports a Ki-67 of 3 and another one reports a Ki-67 of 10? 4. What would you say if you see that an individual has 2 to 3 biopsies with differing Ki-67? For example, a Ki-67 of 3, 5, and 8? Is there a problem with standardization? 5. When would you re-biopsy? Would we re-biopsy because of this? 6. Discuss G3 tumors. How are well-differentiated vs. poorly differentiated G3 tumors different, and how do you figure this out? 7. Discuss metastatic tumors of unknown origin. How can a pathologist help with tumors of unknown origin, particularly in NEC? 8. Should I get a second opinion on my pathology? If so, how is that done? 9. How long are pathology specimens typically stored? (What should I do if I get a phone call that now that it’s been over 10 years, the hospital will no longer store my specimen?) 10. What future advances do you look forward to that might bring hope to the NET Community? RESOURCES READ How to Read Your Pathology Report WATCH "Your Pathology & Your Pathology Report" with Dr. Sue Chang, City of Hope Recorded March 2020 LISTEN 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

CDK4/6 Abemaciclib GEP-NETS << Back Abemaciclib in Treating Patients With Advanced, Refractory, and Unresectable Digestive System Neuroendocrine Tumors CLINICALTRIALS.GOV IDENTIFIER: NCT03891784 DRUG/TREATMENT: abemaciclib PHASE: 2 STATUS: Recruiting SPONSOR: University of Washington Collaborator: Eli Lilly and Company Dr. Heloisa Soares Discusses CDK4/6 abemaciclib GEP-NETS DESCRIPTION: This phase II trial studies how well abemaciclib works in treating patients with digestive system neuroendocrine tumors that have spread to other places in the body, do not respond to treatment, and cannot be removed by surgery. Abemaciclib may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT/Principal Investigator: David B. Zhen, MD Fred Hutch/University of Washington Cancer Consortium EMAIL : dbzhen@uw.edu

<< Go back to the Podcast page EPISODE 18: MENTAL HEALTH & NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE What are the common mental health issues associated with NET? How can they be managed? How does NET impact young adults, NET patients and children of NET patients? Health psychologist Dr. Kersting of the Medical College of Wisconsin elaborates on mental health challenges facing NET patients and their loved ones. Hear coping strategies for anxiety, eating and sleeping difficulties, fatigue and depression. Dr. Kersting discusses what you can expect when meeting a mental health professional and why supporting your mental health is an integral part of your overall care. MEET DR. KAREN KERSTING Karen Kersting, PhD, is a licensed clinical psychologist who provides counseling and psychotherapy to patients treated by surgeons in the Division of Surgical Oncology at the Medical College of Wisconsin. She completed an undergraduate degree in Journalism at the University of Wisconsin—Madison, a PhD in Counseling Psychology at Virginia Commonwealth University in Richmond, VA, and a postdoctoral fellowship in clinical health psychology at the Dayton Veterans Administration Medical Center in Dayton, OH. She joined the faculty of MCW in 2016. Dr. Kersting’s research interests include the development and assessment of integrated psychosocial services for people coping with cancer diagnosis and treatment, with an emphasis on patients diagnosed with cancer of the pancreas. Additionally, her work aims to highlight issues related to social determinants of health and Acceptance and Commitment Therapy interventions. TOP 10 QUESTIONS 1. How common are mental health issues in NET patients? What are the most common mental health issues you see in NET and what can be done about it? 2. How does anxiety impact NET patients? Why is it so prevalent in these patients? When do I know I need to reach out for support with my anxiety? What does treatment for anxiety look like? 3. How does depression impact NET patients? 4. What kind of sleep problems do you see in NET patients? 5. How do you work with patients who have long periods of fatigue? 6. How can a psychologist help people who are struggling to eat after treatment? 7. How can a patient, loved one, or physician tell the difference between a symptom such as fatigue or anxiety caused by NET tumors vs. a psychological trigger? Does it matter? How does one’s mental health impact one’s NET disease or the effectiveness of treatments? 8. Discuss how NET may impact young adult NET patients? How does NET impact young adult children, teenagers, and young children of NET patients? 9. Who should see a psychologist? When should someone see a psychologist? How does one find a psychologist? What should a patient expect when they come for a first visit with a mental health professional such as a psychologist, therapist, social worker or other? 10. What coping strategies or advice do you have for NET patients? What coping strategies or advice for family members or loved ones? RESOURCES READ Acceptance and Commitment Therapy Dr. Kersting's Publications Elephant & Tea Magazine JOIN AYA Neuroendocrine Cancer Group (Young Adult Private Facebook Group) LACNETS RESOURCES Wellness Resources Resources for Children Grief Resources Caregivers 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 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