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Health & Wellness Resources MEDITATION Download Insight Timer App Download Headspace App Download Mindful Meditations by UCLA MARC VIDEOS: YOGA & MEDITATION FOR NET PATIENTS & CAREGIVERS Guided Meditation with Ruth Guided Meditation with Ruth Guided Meditation with Ruth Guided Meditation with Ruth Guided meditation for self-healing Gentle yoga for body awareness Guided meditation for cultivating intentions Yoga as gentle mindful movement Looking for more yoga videos? Check out Yoga for NETs by NorCal CarciNET . FREE HEALTHING COACHING FROM LACNETS Health coaching is an opportunity for individuals to invest time and energy in self-care by going through a personal journey of change with a health coach as a guide. LACNETS offers a series of one-on-one telephonic coaching sessions (8-10 total) to NET patients and caregivers within the United States who are motivated to invest in their own self-care. Learn more here

Research / Clinical Trials < Back to Topics Latest News on Clinical Trials Clinical Trials News Play Video Play Video 05:27 Dr. Jennifer Chan Discusses Results of CABINET Trial (Cabozantinib) as Effective Treatment at ESMO24 Watch #LACNETS' exclusive view with incoming NANETS president Dr. Jennifer Chan at ESMO Congress 2024 (#ESMO24) in Barcelona, Spain, explaining the updated results of the CABINET trial evaluating Cabozantinib in Advanced Neuroendocrine Tumors. https://www.lacnets.org/post/positive-results-of-the-cabinet-trial-show-cabozantinib-as-a-new-effective-treatment-in-advanced-n Play Video Play Video 04:44 Dr. Aman Chauhan About the Most Exciting Progress in the Neuroendocrine Cancer Field @ NANETS Miami In this exclusive interview at NANETS Regional in Miami, NET expert Dr. Aman Chauhan from Sylvester Comprehensive Cancer Center shares the recent advances he's most excited about in the neuroendocrine cancer field. @SylvesterCancer @AmanChauhanMD @CarcinoidNETs @HealingNET1 @netcancerday @CureNETs @PheoPara #NETsMiami Play Video Play Video 03:51 Breaking News: NETTER-2 Trial Supports Lutathera® as 1st Line Treatment - Dr. Singh Explains The NETTER-2 phase 3 trial results show Lutathera® may be offered as first-line treatment for newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs). When compared to long-acting octreotide, Lutathera® reduced the risk of disease progression or death by 72% in patients with somatostatin receptors. “These positive results for Lutathera are practice-changing and offer new first-line treatment data for patients who have a significant unmet need. This study confirms the clinical benefit of first-line radioligand therapy (RLT) for newly diagnosed patients living with these types of advanced GEP-NETs. These findings should instill confidence among physicians in using Lutathera as a first-line treatment for patients with this life-threatening type of cancer.” — Dr. Simron Singh, NET expert, Sunnybrook Health Sciences Centre, Ontario, Canada. Read the full Novartis Press Release: https://www.novartis.com/news/media-releases/novartis-lutathera-significantly-reduced-risk-disease-progression-or-death-72-first-line-treatment-patients-advanced-gastroenteropancreatic-neuroendocrine-tumors Play Video Play Video 04:05 Dr. Soulen Talks About 2023 Highlights and His Hopes for 2024 Director of Programs and Outreach Lisa Yen interviews Dr Michael Soulen, Interventional Radiologist at Penn. He talks about the highlights of 2023 and shares his hopes for 2024. Play Video Play Video 02:14 Dr. Kunz Shares 2023 Highlights and Her Hopes for 2024 Director of Programs and Outreach Lisa Yen interviews NANETS Past President, Dr. Pamela Kunz. She talks about the highlights of 2023 and shares her hopes for 2024. Play Video Play Video 04:01 Dr. Strosberg Shares 2023 Highlights and Hopes for 2024 Director of Programs and Outreach Lisa Yen interviews Dr. Jonathan Strosberg, Medical Oncologist at Moffitt. He talks about the highlights of 2023 and shares his hopes for 2024. Play Video Play Video 03:40 Dr. Halfdanarson Shares 2023 Highlights and His Hopes for 2024 Director of Programs and Outreach Lisa Yen interviews NANETS President Dr. Thor Halfdanarson. He talks about the highlights of 2023 and shares his hopes for 2024. Play Video Play Video 03:52 Dr. Jennifer Chan Shares an Important Update about the CABINET Trial Dr. Jennifer Chan from Dana Farber Cancer Institute shared the CABINET trial data that showed cabozantinib (CABOMETYX®) helped those with advanced pancreatic NET and extra pancreatic NET (NET outside the pancreas). The results suggest that cabozantinib may be an effective option to treat NET patients, even those who have already tried other therapies. The NET patient community can be hopeful that there will likely be another FDA-approved oral treatment available in the near future. Click here to read the detailed results of the CABINET trial announcement (https://www.businesswire.com/news/home/20231020586023/en/Detailed-Results-from-Phase-3-CABINET-Pivotal-Trial-Evaluating-Cabozantinib-in-Advanced-Neuroendocrine-Tumors-Presented-at-ESMO-2023?fbclid=IwAR18JTeSfpDVo9upMsyTrKssQfvT5vBrr0ifXJUaEKWDKh4nEcHQtRqC_M8) or the OncLive article here (https://www.onclive.com/view/cabozantinib-confers-pfs-benefit-in-previously-treated-advanced-neuroendocrine-tumors?fbclid=IwAR2bcn_e_CHS65aS5jQGaFvxG_NrE6mU-xnHfU6C33FH0DUL_i7g6yKrc10). Watch this exclusive video interview below with Dr. Jennifer Chan at ESMO - European Society for Medical Oncology 2023 in Madrid, Spain. Educational Videos on Research / Clinical Trials Educational Content on Research/Clinical... Play Video Play Video 28:41 Clinical Trials 101/Opportunities to Access NET Resources&Trials • Del Rivero MD • 2023 NETCancerDay Clinical Trials 101/Opportunities to Access NET Resources&Trials • Del Rivero MD • 2023 NET Cancer Day Symposium • Santa Monica, CA • @NCFCancer Speaker: Jaydira Del Rivero, MD Medical Oncologist Endrocrinologist National Cancer Institute, NIH For more information, visit LACNETS.org Play Video Play Video 16:37 "Understanding the Latest NET Clinical Trials" Dr. Pamela Kunz • 2024 #LACNETS Patient Conference 15) Understanding the Latest NET Clinical Trials • 2024 Neuroendocrine Tumor Patient Conference Our 2024 LACNETS Neuroendocrine Tumor Patient Conference is designed for neuroendocrine cancer (NET) patients and caregivers to deepen your understanding of NETs. Whether you are newly diagnosed or have been living with NET for many years, we encourage you to attend: - Learn from top NET experts from across North America on a range of topics relevant to the NET patient journey. - Topics include work-ups, scans, surgery, carcinoid crisis, liver-directed therapy, PRRT, systemic treatments, treatment sequencing, NET guidelines, and clinical trials. - Gain insight into NET decision-making through the NET tumor board panel discussion. - Hear stories from NET patients and caregivers. - Join virtually, where you can pause, rewind, or replay. - There is no cost to attend. This event is made possible by the generosity of donors and sponsors. #LACNETS #neuroendocrinecancer #clinicaltrials #lungcancer #NETcancer #Letstalkaboutnets For more information, visit LACNETS.org. Play Video Play Video 01:30:11 LACNETS • "Navigating Clinical Trials: Expectations vs. Realities" with Taymeyah Al-Toubah •Aug 2023 Join LACNETS to hear Taymeyah Al-Toubah, MPH, Senior Research Project Manager at the Neuroendocrine Tumor Program of Moffitt Cancer Center. About Our Speaker: Taymeyah Al-Toubah, MPH Senior Research Project Manager Neuroendocrine Tumor Program at Moffitt Cancer Center, Tampa, FL Taymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelor’s degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children’s Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public Health in Epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs. From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences. In April 2023, she formally transitioned to a new position as a project manager of the NET program, where she will continue to mentor new coordinators while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt. She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member of NANETS on the Continuing Education and Symposium Planning committees. She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator. For more information, visit LACNETS.org. Play Video Play Video 17:07 Clinical Trials: Why, What & How • Josh Mailman • 2023 LACNETS Patient Education Conference Watch "Clinical Trials: Why, What & How" with Josh Mailman. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 18:39 The Latest in NET Clinical Trials • Dr. Simron Singh • 2023 LACNETS Patient Education Conference Watch "The Latest in NET Clinical Trials" with Dr. Simron Singh. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 01:34:45 LACNETS • "Novel Translational Research for Metastatic NET Patients at the NCI" • Jan 2023 Join LACNETS for this special educational event. What if you could both undergo surgery for your metastatic disease and also donate your liver tumor to find a cure for NET? Learn how you can contribute to NET research. The NET team at the National Cancer Institute (NCI) will give us a behind-the-scenes look at their innovative NET research. Be inspired by their hard work and dedication to the NET community. For more information, visit LACNETS.org. Play Video Play Video 01:32:12 LACNETS • "Update on NET Clinical Trials" with Dr. Heloisa Soares • Mar 2023 Join us for an "Update on NET Clinical Trials" with special guest Dr. Heloisa Soares, a medical oncologist at the Huntsman Cancer Institute (HCI) at the University of Utah, to hear the latest in NET clinical trials. Visit LACNETS.org/Mar2023 for more information. Play Video Play Video 01:30:15 LACNETS Webinar: "2022: Year in Review" with Medical Oncologist Dr. Thor Halfdanarson Join LACNETS and medical oncologist Dr. Thorvardur Halfdanarson of Mayo Clinic for the webinar "2022: Year in Review" for an update on the major medical conferences of 2022. This webinar includes a presentation and Q&A. Speaker: Thor Halfdanarson, MD Medical Oncologist Mayo Clinic To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 01:27:49 LACNETS Webinar: "What's New with NETs?" with Pamela Kunz, MD of Yale Cancer Center What are the latest treatment options for neuroendocrine cancer? What's on the horizon for upcoming treatments and clinical trials? Dr. Pamela Kunz of Yale School of Medicine addresses these important topics and updates – plus answers your questions in a live Q&A. Speaker: Pamela Kunz, MD, Associate Professor of Medicine in the Department of Medicine Division of Oncology, Yale School of Medicine Director of the Center for Gastrointestinal Cancers, Yale Cancer Center To learn more about LACNETS, visit www.LACNETS.org. Load More In Depth Look at Active Clinical Trials In Depth Look: Active Clinical Trials Play Video Play Video 29:35 IL13Rα2 CAR T Cell Study for Solid Tumor Cancers • Dr. Anusha Kalbasi Dr. Anusha Kalbasi from Stanford discusses the immunotherapy study using IL13Rα2 CAR T cell for the treatment of metastatic solid tumors on March 27, 2024. For more information about this trial, visit https://www.lacnets.org/clinical-trials-1/il13r%CE%B12-car-t-cell-study-for-solid-tumor-cancers. Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 05:10 Lu-177 + Carboplatin, Etoposide, and Atezolizumab in SCLC • Dr. Aman Chauhan Dr. Aman Chauhan at Sylvester Comprehensive Cancer Center, University of Miami discusses the Lu-177 + Carboplatin, Etoposide, and Atezolizumab in SCLC. Recorded: June 20, 2024 Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 05:44 Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC • Dr. Aman Chauhan Dr. Aman Chauhan at Sylvester Comprehensive Cancer Center, University of Miami discusses the Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC. Recorded: June 20, 2024 Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 08:26 DAREON™-9: DLL-3 BiTE + Topotecan in Small Cell Lung Cancer (SCLC) • Dr. Aman Chauhan 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). Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 11:35 LACNETS • Lu177 Dotatate PRRT + M3814 (Peposertib) • Dr. Aman Chauhan Dr. Aman Chauhan discusses Lutetium Lu 177 dotatate in combination with M3814 (peposertib). IDENTIFIER (ClinicalTrials.gov): NCT04750954 Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 04:48 June 2024: Dr. Aman Chauhan Discusses the Alpha PRRT with Pb-212 VMT Study Dr. Aman Chauhan Discusses the Alpha PRRT with Pb-212 VMT Study. Recorded June 2024. Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 08:42 June 2024: Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine Study Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine Study. Recorded in June 2024. Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 13:45 April 2023: Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine Study Dr. Aman Chauhan discusses Phase 2 LUTATHERA (Lu-177) + Triapine study. Recorded in April 2023. Visit the LACNETS Clinical Trials page for more information at https://www.lacnets.org/clinical-trials. Play Video Play Video 08:01 Dr. Aman Chauhan discusses the DAREON™- 5: DLL-3 BiTE for Neuroendocrine Cancers DAREON-5 is a phase 2 trial studying BI 764532, an antibody-like molecule (DLL3/CD3 bispecific) that may help the immune system fight cancer. This is a clinical trial for high grade neuroendocrine cancers. 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. The study is sponsored by Boehringer Ingelheim. For more information, visit https://www.lacnets.org/clinical-trials-1/dareontm--5%3A-dll-3-bite-for-neuroendocrine-cancers. Load More Patient Stories: Clinical Trials Patient Stories: Clinical Trials Play Video Play Video 04:08 Patient Story: NET Patient shares about her experience in a clinical trial (LACNETS) NET Patient Mary shares about her experience in a clinical trial (Everolimus or Afinitor). November 7, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 21:23 NET Clinical Trial: An Oral Somatostatin Analogue in Patients with Carcinoid Syndrome - Jan 2024 Crinetics is sponsoring a clinical trial to evaluate the safety, pharmacokinetics (PK), and exploratory dose response of paltusotine treatment, an oral (pill) somatostatin analogue in patients with carcinoid syndrome. Learn more about the trial and inclusion criteria here. This trial is currently open at Hoag Cancer Center in Newport Beach, California with Dr. Michael Demeure. If interested, contact Clinical Research Nurse Coordinator Jericho Rabago via direct line 949-764-6796 or email Jericho.Rabago@hoag.org. Learn about more clinical trials here: lacnets.org/clinical-trials Play Video Play Video 07:10 Patient Story: NET Patient shares her experience with Alpha PRRT NET Patient DeAnne shares her experience with Alpha PRRT. March 16th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. < Back to Topics Next Topic >

Want to know which NET specialists other patients see? Wondering who is on octreotide and who is on lanreotide, as well as their opinion on either? Curious to learn how many people have had the Gallium68 scan and where they got the scan done? The Neuroendocrine Cancer Foundation launched a private Facebook group exclusively for NET patients and caregivers to have a safe space to ask questions, share helpful information and seek support from one another. Please note: This private group is for NET patients and caregivers only. Click here to join the Facebook Group

<< 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

<< Go back to the Podcast page EPISODE 2: DIARRHEA & NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE For our second episode, NET expert and gastroenterologist Dr. David Metz answers the top 10 GI questions for NETs. Dr. Metz addresses diarrhea, diet, the difference between carcinoid tumor vs. carcinoid syndrome, and effective symptom management. MEET DR. DAVID C. METZ David C. Metz, MD Professor of Medicine, Perelman School of Medicine Co-Director Emeritus, University of Pennsylvania Neuroendocrine Tumor Program After earning his MD from the University of the Witwatersrand's Medical School, Dr. Metz was a resident at both the Albert Einstein Medical Center and the Johannesburg General Hospital. He went on to complete fellowships at Georgetown University Hospital as well as the National Institutes of Health. Arriving at Penn Medicine in 1993, David Metz, MD, held a variety of leadership roles within the Department of Gastroenterology, including Co-Directorship of the Neuroendocrine Tumor Center and Penn NET Treatment Program. Dr. Metz was previously a staff fellow at the National Institutes of Health, where he performed basic research in pancreatic acinar cell secretion and clinical research in Zollinger-Ellison syndrome. While at Penn Medicine, he served as Chair of the North American Neuroendocrine Tumor Society (NANETS), as a member of the Liaison Committee for Recertification of the American Board of Internal Medicine (American Gastroenterological Association representative), and on the Food and Drug Administration Gastrointestinal Drugs Advisory Committee, among other positions. Dr. Metz's clinical interests at Penn included Zollinger-Ellison syndrome and other acid-peptic conditions, Helicobacter pylori infection, non-steroidal anti-inflammatory drug gastropathy and the diagnosis and management of patients with functional and non-functional neuroendocrine tumors of the pancreas and alimentary tract. An investigator for a series of prominent clinical trials in all of these areas, Dr. Metz has published more than 200 articles on topics of clinical interest and research. He retired in July 2021 after 28 years at Penn Medicine. In 2021 Dr. Metz received the NANETS Lifetime Achievement Award that honors an individual who, over the course of their career, has provided outstanding contributions to neuroendocrine disease management through research, clinical practice or educational initiatives, as well as exceptional leadership in NANETS and dedication to its mission. TOP 10 QUESTIONS What is the difference between carcinoid syndrome and carcinoid tumor? What are the most common causes of diarrhea? How do I know if my diarrhea is from NET, medication, diet, or another reason? (What is the difference between diarrhea and fat-absorption diarrhea?") How do I know if diarrhea is part of carcinoid syndrome or not? Discuss cramping, bloating, and abdominal pain. Is this part of carcinoid syndrome? (How do I know if these are from the tumor, treatment, or something else?) Why do they take out the gallbladder and what effect does this have on GI symptoms? Are there other syndromes besides carcinoid syndrome that cause diarrhea? How might my doctor evaluate my diarrhea? When should someone have EGD, colonoscopy, and capsule endoscopy and how might it affect symptom management? What do I do to control my diarrhea? What treatment/diet/meds would help prevent chronic cramping, bloating, loud gurgling of GI tract for a midgut patient on SSAs ? What is the best diet for diarrhea? 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

<< Go back to the Podcast page EPISODE 31: CLINICAL TRIALS: EXPECTATIONS VS. REALITIES (PART I & II) Download a Transcript of Part 1 >> Download a Transcript of Part 2 >> ABOUT THIS EPISODE In this 2-part series, we reprise “Navigating Clinical Trials: Expectations vs Realities” with Taymeyah Al-Toubah. This was previously broadcast on August 19th, 2023, as a LACNETS monthly educational webinar. In Part 1, Taymeyah discusses clinical trial terminology, timeline, questions to ask, and misconceptions. In Part 2, Taymeyah answers questions about logistics and practical aspects of clinical trials, such as costs, response time, and follow-up. She also answers frequently asked questions about PRRT trials, including alpha trials. MEET TAYMEYAH AL-TOUBAH, MPH Taymeyah Al-Toubah is a clinical researcher, currently at Moffitt Cancer Center, who has been in the research field for 10 years. She began her career in 2013 while obtaining her bachelors degrees in biomedical sciences and psychology, working in pediatric and neonatal research at Johns Hopkins All Children’s Hospital. In 2016, she shifted her career focus to oncology, beginning with phase I trials and working in all solid tumors. She completed her Master of Public health in epidemiology in 2017 and focused her graduate thesis on neuroendocrine tumors. In 2018, she switched departments to focus exclusively on NETs. From 2018 – 2023, she was the primary NET coordinator in the GI department, managing all clinical trials while leading the GI team, managing the NET clinic coordination amongst the ancillary departments, and working on all retrospective and non-interventional NET research. She has worked on protocol development, database analysis, and manuscript writing, resulting in over 30 published manuscripts and presented her research at several national and international oncology and NET conferences, with oral abstracts at several ENETS and NANETS conferences. In April 2023, she formally transitioned to a new position as a project manager of the NET program where she will continue to mentor new coordinators, while working on protocol development and writing, manuscript writing, non-interventional clinical trials, and retrospective NET research. One of her first major projects will be to curate and develop a master database of all NET patients seen at her institution that will provide the basis for all future NET research to be published at Moffitt. She is currently on the board of one of the first NET patient advocacy groups in Florida (FLaNET Carcinoid Community), which kicked off alongside the Tampa Regional NANETS meeting in November 2022. She is an active member in NANETS on the Continuing Education and Symposium Planning committees. She plans to dedicate the remainder of her career to this disease and community. Her ultimate plan is to attend medical school, specialize in medical oncology, and continue to serve the academic NET community and patient base as a physician and clinical investigator. RESOURCES READ Glossary: Common Terms in Clinical Trials Navigating Clinical Trials: Expectations vs Realities - Slides from August 19, 2023 LACNETS Educational Event "How to Prepare for Clinical Trials" Info Sheet WATCH 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

Nutrition Resources NUTRITION & RECIPE BOOKS “Food You Love” Cookbook for NETs Request a FREE copy from TerSera! Click here Nutrition & Neuroendocrine Cancer Booklet by NET Dietician Tara Whyand Download here Culinary Kit for Neuroendocrine Tumor Patients Download here Culinary Kit for NET Patients with Carcinoid Syndrome Download here Xermelo - Ask a Clinical Nurse Educator A designated Clinical Nurse Educator will be assigned to you at no cost to provide you with individualized support and answer questions about the management of carcinoid syndrome including symptom management and and how to keep a food journal. Note: it’s not just for those on xermelo. Click here for more information EDUCATIONAL WEBINARS "Nutrition Therapy for NETs" with Meghan Laszlo, MS, RD, CSO "Nutrition & Neuroendocrine Cancer" with Tara Whyand, MSc, BSc "Luncheon with the Experts," featuring Sina Teskey, a dietician who specializes in GI cancers and neuroendocrine tumor patients. Also Watch: Carcinoid Cancer Foundation Video with NET Nutritionist Leigh Ann Burns PODCAST The LACNETS Podcast: Nutrition for NETS Meghan Laszlo, MS, RD, CSO of Cedars-Sinai Medical Center answers the top 10 NET nutrition questions, covering topics including carcinoid syndrome, prescription enzymes, diarrhea, recommended diet for NET patients, and much more! Listen Here The LACNETS Podcast: Diarrhea and NETS NET expert and gastroenterologist Dr. David Metz joins us for this month’s episode to answer the top 10 GI questions for NETs. Dr. Metz addresses diarrhea, diet, carcinoid syndrome and effective symptom management. Listen Here The LACNETS Podcast: Nutrition & Diet Considerations for NET NET dietician Sina Teskey from the Medical College of Wisconsin answers common questions about diet and nutrition raised among NET patients and caregivers. She addresses special diets, food restrictions, and whether sugar “feeds” cancer. Sina also speaks to diarrhea, and digestive enzymes and shares tips on how to maintain nutrition and weight. Listen Here ADDITIONAL NUTRITION RESOURCES Carcinoid Cancer Foundation's Nutrition Resources NET Research Foundation’s Nutrition Resources

See videos from the previous annual conferences of the Neuroendocrine Cancer Foundation Annual Conferences < Back to Topics 2023 Virtual LACNETS NET Patient Conference Play Video Play Video 13:08 Welcome & Introduction • 2023 LACNETS Neuroendocrine Tumor Patient Conference • June 17, 2023 The LACNETS team welcomes viewers to the 2023 LACNETS Neuroendocrine Tumor Patient Conference on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 21:51 NETS 101: Overview of NET Terms & Concepts • Dr. Aman Chauhan • 2023 LACNETS Patient Conference Watch "NETS 101: Overview of NET Terms & Concepts" with Dr. Aman Chauhan. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit, LACNETS.org. Play Video Play Video 27:33 A Conversation with Three NET Surgeons • Dr. Clarke, Dr. Gangi & Dr. Anaya • 2023 LACNETS Conference Watch 'A Conversation with Three NET Surgeons' featuring Dr. Callisia Clarke, Dr. Alexandra Gangi and Dr. Daniel Anaya Saenz. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 05:02 Kimberly Shares About Her NET Journey • 2023 LACNETS Patient Education Conference Kimberly shares her inspiring NET journey as part of the 2023 LACNETS Patient Education Conference. Play Video Play Video 04:49 Navigating Treatments • Moderators: Dr. Hendifar, Dr. Li & Mary Donlevy • 2023 LACNETS Conference Moderators of the 2023 LACNETS Patient Education Conference discuss "navigating treatments." For more information, visit LACNETS.org. Play Video Play Video 17:02 The Latest in Liver-Directed Therapy • Dr. Osmanuddin Ahmed • 2023 LACNETS Patient Conference Watch "The Latest in Liver-Directed Therapy" with Dr. Ahmed. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 19:08 The Latest in NET Imaging • Dr. Nadine Mallak • 2023 LACNETS Patient Education Conference Watch "The Latest in NET Imaging" with Dr. Nadine Mallak. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 17:55 The Latest in PRRT • Dr. Carina Mari Aparici • 2023 LACNETS Patient Education Conference Watch "The Latest in PRRT" with Dr. Carina Mari Aparici. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 08:50 Symptom Management & Clinical Trials • Moderators: Dr. Hendifar, Dr. Li & Donlevy • 2023 Conference Co-Moderators discuss "Symptom Management and Clinical Trials" during the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 06:59 Don & Beth Share Their NET Journey • 2023 LACNETS Patient Conference Don & Beth share their inspiring NET journey. For more information, visit LACNETS.org. Play Video Play Video 21:49 The Latest in Systemic Treatments & Considerations for Treatment Sequencing • Dr. Kunz • LACNETS Watch "The Latest in Systemic Treatments & Considerations for Treatment Sequencing" with Dr. Pamela Kunz. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 18:39 The Latest in NET Clinical Trials • Dr. Simron Singh • 2023 LACNETS Patient Education Conference Watch "The Latest in NET Clinical Trials" with Dr. Simron Singh. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 17:07 Clinical Trials: Why, What & How • Josh Mailman • 2023 LACNETS Patient Education Conference Watch "Clinical Trials: Why, What & How" with Josh Mailman. This presentation is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 36:37 Live Q&A with NET Experts Moderated by Lisa Yen • 2023 LACNETS Patient Education Conference Watch NET Experts in this live Q&A moderated by Director of Programs and Outreach Lisa Yen. This Q&A is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 34:54 Live Q&A with NET Experts Moderated by Josh Mailman • 2023 LACNETS Patient Education Conference Watch NET Experts in this live Q&A moderated by President of NorCal CarciNET & Patient Advocate Josh Mailman. This Q&A is part of the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. Play Video Play Video 05:00 Closing • Co-Moderators & the LACNETS Team • 2023 LACNETS Conference Co-Moderators and the LACNETS Team close the 2023 LACNETS Neuroendocrine Tumor Patient Education Conference held on June 17, 2023. For more information, visit LACNETS.org. 2022 Virtual LACNETS NET Patient Conference Play Video Play Video 10:49 01. Conference Welcome from LACNETS - 2022 LACNETS NET Patient Conference 2022 LACNETS NET Patient Conference Presented by LACNETS LACNETS Staff: Lindsey Jeu De Vine, Director of Communications Lisa Yen, NP, NBC-HWC, Program Director For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 15:24 02. Co-Moderators: Newly-Diagnosed + Conference Theme - 2022 LACNETS NET Patient Conference Conference co-moderators discuss what they would say to someone who has just been diagnosed with neuroendocrine cancer (NET), as well as the conference theme, "Empowering You to Make NET Decisions." 2022 LACNETS NET Patient Conference Presented by LACNETS Co-moderators: Beth DeBlase, NET Patient Mary Donlevy, NET Patient, LACNETS Board Member Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai Daneng Li, MD, Medical Oncologist, Cedars-Sinai Lisa Yen, NP, HWC-NBC, Program & Outreach Director, LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 05:29 3. What is NET? Many NET patients find it challenging to explain their diagnosis to loved ones. To help patients and loved ones understand and explain neuroendocrine tumors (NETs), we created this short educational video with the help of NET experts and patient advocates. We hope this video serves as a helpful tool to share with your loved ones. For more information on neuroendocrine cancer, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Music by Tom Bajoras. Video produced by tvplive.com. Play Video Play Video 06:38 04. Patient Story: Treatment Decisions & Navigating Insurance - 2022 LACNETS NET Patient Conference Diagnosed in 2021 with NETs in the small bowel, NET Patient Julie shares her path to treatment in hopes of providing guidance to newly-diagnosed patients. 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 15:22 05. NET Surgery: Making Decisions & Preparing for Surgery (Dr. Clarke) - 2022 LACNETS Conference Dr. Callisia Clarke addresses surgery for neuroendocrine cancer including decision-making & preparing for surgery. Presenter: Callisia Clarke, MD Surgical Oncologist Medical College of WI 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 18:28 06. NET Testing: The What, When, How and Why (Dr. Namrata Vijayvergia) - 2022 LACNETS Conference Dr. Neena Vijayvergia addresses the what, when, how and why of NET testing. Presenter: Namrata Vijayvergia, MD Medical Oncologist, Fox Chase Cancer Center 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 04:29 07. Co-Moderators: Navigating Treatment Decisions Conference co-moderators discuss what they'd share with a NET patient who considering the many treatment options for NETs. 2022 LACNETS NET Patient Conference Presented by LACNETS Co-moderators: Beth DeBlase, NET Patient Mary Donlevy, NET Patient, LACNETS Board Member Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai Daneng Li, MD, Medical Oncologist, Cedars-Sinai Lisa Yen, NP, HWC-NBC, Program & Outreach Director, LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 22:57 08. NET Treatments: Medical Therapies & Clinical Trials (Dr. Diane Reidy) - 2022 LACNETS Conference Dr. Diane Reidy-Lagunes joins us for her presentation on NET treatments, including medical therapies & clinical trials. *This presentation is also available in Spanish: lacnets.org/spanish-resources Speaker: Diane Reidy-Lagunes, MD Medical Oncologist, Memorial Sloan Kettering 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 15:21 09. The Latest in Liver Directed Therapy + Histotripsy (Dr. Osman Ahmed) - 2022 LACNETS Conference International radiologist Dr. Osman "Os" Ahmed addresses the latest in liver-directed therapy and histotripsy for neuroendocrine cancer. Speaker: Osman Ahmed, MD International Radiologist, University of Chicago 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 16:32 10. The Latest in NET Imaging & PRRT (Dr. Thomas Hope) Radiologist Dr. Thomas Hope addresses the latest in NET imaging and PRRT. Speaker: Thomas Hope, MD Radiologist, UCSF 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 04:44 11. Co-Moderators: Finding a “new normal” - 2022 LACNETS NET Conference Conference co-moderators discuss what they'd say to a NET patient who wonders how to find a “new normal” in this rollercoaster ride of living with NETs. 2022 LACNETS NET Patient Conference Presented by LACNETS Co-moderators: Beth DeBlase, NET Patient Mary Donlevy, NET Patient, LACNETS Board Member Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai Daneng Li, MD, Medical Oncologist, Cedars-Sinai Lisa Yen, NP, HWC-NBC, Program & Outreach Director, LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 07:12 12. Patient Story: From Diagnosis to Patient Advocacy - 2022 LACNETS NET Patient Conference Diagnosed with neuroendocrine cancer (NET) in 2021, NET patient Michel shares how the lack of information and awareness of his uncommon diagnosis inspired him to start a patient support group in Mexico called NETs Mexico. This patient story is also available in Spanish, found here: www.LACNETS.org/spanish-resources 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 21:13 13. Managing NET Symptoms & Treatment Side Effects (Dr. Sandy Kotiah) - 2022 LACNETS Conference Dr. Sandy Kotiah addresses the management of #NET symptoms and treatment side effects. Speaker: Sandy Kotiah, MD Medical Oncologist, Mercy Medical 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 16:36 14. Best Outcomes for NETs (Dr. Julie Hallet) - 2022 LACNETS Conference Surgical oncologist Dr. Julie Hallet addresses how to achieve the best outcomes for NETs and what we know about how care is delivered. Speaker: Julie Hallet, MD, MSc, FRCSC Surgical Oncologist, Sunnybrook 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 15:11 15. Being an Engaged Patient (Josh Mailman) - 2022 LACNETS Conference NET patient advocate Josh Mailman discusses the importance of being an engaged patient. Speaker: Josh Mailman, MBA President, NorCal CarciNET Community 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 03:03 16. Co-Moderators: Q&A - The importance of being an engaged patient Conference co-moderators discuss the importance of being an engaged patient. 2022 LACNETS NET Patient Conference Presented by LACNETS Co-moderators: Beth DeBlase, NET Patient Mary Donlevy, NET Patient, LACNETS Board Member Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai Daneng Li, MD, Medical Oncologist, Cedars-Sinai Lisa Yen, NP, HWC-NBC, Program & Outreach Director, LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 02:32 17. Learn Your NET Intro To help improve patient-physician communication, we are excited to share that we have developed another helpful communication tool for NET patients and caregivers called NET Intro. Your NET Intro is a downloadable wallet-sized card to help you learn to introduce yourself to someone who doesn’t yet know your NET history. Download your NET Intro card here: lacnets.org/netintro *A special thank you to LACNETS Program Director Lisa Yen and our weekly support group for helping us create this important tool for NETs. Play Video Play Video 01:02:59 18. Live Q&A with the NET Experts (All Speakers) - 2022 LACNETS Conference 8 NET experts from around the country join us for a live Q&A on neuroendocrine cancer. 2022 LACNETS NET Patient Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 05:28 19. Conference Closing Remarks from LACNETS - 2022 LACNETS Conference 2022 LACNETS NET Patient Conference Presented by LACNETS LACNETS Staff: Lindsey Jeu De Vine, Director of Communications Lisa Yen, NP, NBC-HWC, Program Director For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. 2021 Virtual LACNETS NET Patient Conference Play Video Play Video 09:41 1. Conference Welcome - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS LACNETS Staff: Lindsey Jeu De Vine, Director of Communications Lisa Yen, NP, NBC-HWC, Program Director For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 06:30 02. Co-Moderators discuss NET expert consultation and surgery - 2021 LACNETS Virtual Conference Conference co-moderators discuss NET expert consultation and surgery for NETs 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Co-moderators: Beth DeBlase, NET Patient Mary Donlevy, NET Patient, LACNETS Board Member Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai Daneng Li, MD, Medical Oncologist, Cedars-Sinai For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 04:40 03. Patient Story (Federico) - 2021 LACNETS Virtual Conference NET Patient Federico and his wife share their journey with NET. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS This video is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 30:23 04. What to Expect with a NET Expert Consultation (Dr. Soares) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Heloisa Soares, MD, PhD Medical Oncologist Huntsman Cancer Institute This presentation is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 15:08 05. To Cut or Not to Cut? Surgery for NETs (Dr. Clarke) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Callisia Clarke, MD Surgical Oncologist Medical College of WI For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 03:40 06. Co-moderators discuss treatment for NETs - LACNETS 2021 Virtual Conference Conference co-moderators discuss treatment for NETs. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Co-moderators: Beth DeBlase, NET Patient Mary Donlevy, NET Patient, LACNETS Board Member Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai Daneng Li, MD, Medical Oncologist, Cedars-Sinai For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 20:56 07. Surveillance, Maintenance, More Treatments (Dr. Halfdanarson) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Thorvadur (Thor) Halfdanarson, MD Medical Oncologist; Mayo Clinic For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 19:16 08. Radiation Safety with PRRT (Dr. Hope) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Tom Hope, MD Radiologist UCSF For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 17:16 09. Liver-directed Therapy (Dr. Nutting) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Charles Nutting, DO Interventional Radiologist Endovascular Consultants of Colorado For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 04:29 10. Co-moderators discuss symptom management Co-moderators discuss symptom management. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Co-moderators: Beth DeBlase, NET Patient Mary Donlevy, NET Patient, LACNETS Board Member Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai Daneng Li, MD, Medical Oncologist, Cedars-Sinai For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 06:00 11. Patient Story about Symptom Management (Val) - 2021 LACNETS Virtual Conference NET Patient Val shares her experience with symptom management and NETs. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 17:19 12. Symptom Management (Dr. Del Rivero) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Jaydira Del Rivero, MD Endocrinologist, Oncologist NIH This presentation is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 16:29 13. Complementary Medicine (Dr. Duma) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Narjust Duma, MD Assistant Professor & Thoracic Oncologist UW Madison This presentation is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 06:27 14. Co-moderators discuss NET Research, Advocacy & Support - 2021 LACNETS Virtual Conference Co-moderators discuss NET Research, Advocacy & Support 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Co-moderators: Beth DeBlase, NET Patient Mary Donlevy, NET Patient, LACNETS Board Member Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai Daneng Li, MD, Medical Oncologist, Cedars-Sinai For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 18:28 15. NET Research: What's on the Horizon? (Dr. Kunz) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Presenter: Pam Kunz, MD Medical Oncologist Yale Cancer Center For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 05:40 16. Caregiver Story (Federico and Gilda) - 2021 LACNETS Virtual Conference NET caregiver Gilda shares her story about the importance of NET patient advocacy and support. 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS This video is also available in Spanish, found here: www.LACNETS.org/spanish-resources. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:03:41 18. Q&A with the NET Experts (All Faculty) - 2021 LACNETS Virtual Conference Description: 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS All presenters of the 2021 LACNETS Virtual Conference. For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 04:58 19. Conference Closing Remarks (Co-Moderators & LACNETS Staff) - 2021 LACNETS Virtual Conference 2021 Los Angeles Neuroendocrine Tumor Patient Education Virtual Conference Presented by LACNETS Co-moderators: Beth DeBlase, NET Patient Mary Donlevy, NET Patient, LACNETS Board Member Andrew Hendifar, MD, Medical Oncologist, Cedars-Sinai Daneng Li, MD, Medical Oncologist, Cedars-Sinai LACNETS Staff: Lindsey Jeu De Vine, Director of Communications Lisa Yen, NP, NBC-HWC, Program Director For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. 2020 Virtual LACNETS NET Patient Conference Play Video Play Video 42:50 Finding a NET Expert + Surgery for NETs - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: LACNETS Conference Welcome (0:00 - 5:44) Lindsey Jeu De Vine, Director of Communications, LACNETS Lisa Yen, NBC-HWC, Program Director, LACNETS "Finding a NET Expert" (5:44 - 22:25) Cindy Lovelace , Executive Director Healing NET Foundation "Surgery for NETs" (22:25 - end of video) Alexandra Gangi, MD , Surgical Oncology Cedars-Sinai Medical Center For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:17:15 "Systemic Therapy: GI, Lung, PNETS & Unknown Primary" 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: "Patient Story" (0:00 - 7:03) Eric, NET Patient "Systemic Therapy: GI NETs" (7:03 - 28:13) Dan Li, MD , Medical Oncology City of Hope "Systemic Therapy: Lung NETs" (28:13 - 52:08) Robert Ramirez, DO, FACP, Neuroendocrine & Thoracic Oncology Ochsner Medical Center "Systemic Therapy: PNETs and NETs of Unknown Primary" (52:08 - end of video) Andrew Hendifar, MD, Medical Oncology Cedars-Sinai Medical Center For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:20:02 Imaging & Role of IR (Liver-Directed Therapy) + PRRT - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: "Patient Story" (0:00 - 6:06) Mary, NET Patient "Imaging & Role of IR (Liver-Directed Therapy)" (6:06 - 43:31) Michael C. Soulen, MD , Radiology Penn Medicine "Patient & Caregiver Story" (43:31 - 50:52) Shaunie, NET Patient; Heather, NET Caregiver "PRRT" (50:52 - end of video) Erik S. Mittra, MD, PhD, Diagnostic Radiology, Nuclear Medicine Oregon Health & Science University For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 49:02 Symptom Management: Diarrhea, Hyperglycemia & Diabetes - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Presentations & Times: "Patient Story" (0:00 - 6:30) Brent, NET Patient "Symptom Management: Diarrhea" (6:30 - 29:05) David C. Metz, MD, Gastroenterology Penn Medicine "Symptom Management: NET-related Hyperglycemia and Diabetes" (29:05 - end of video) Run Yu, MD, PhD , Endocrinology UCLA Health For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. Play Video Play Video 01:00:23 Live Q&A with 10 NET Experts - 2020 LACNETS Virtual NET Conference Virtual 2020 Los Angeles Neuroendocrine Tumor Patient Education Conference Presented by LACNETS Q&A Panel Speakers: • Alexandra Gangi, MD , Surgical Oncology, Cedars-Sinai Medical Center • Andrew Hendifar, MD, Medical Oncology, Cedars-Sinai Medical Center • Dan Li, MD , Medical Oncology, City of Hope • David C. Metz, MD , Gastroenterology, Penn Medicine • Erik S. Mittra, MD, PhD, Diagnostic Radiology, Nuclear Medicine, Oregon Health & Science University • Robert Ramirez, DO, FACP, Neuroendocrine & Thoracic Oncology, Ochsner Medical Center • Michael C. Soulen, MD , Radiology, Penn Medicine • Run Yu, MD, PhD , Endocrinology, UCLA Health Q&A Moderators: • Josh Mailman, MBA, President, NorCal CarciNET • Lisa Yen, NP, NBC-HWC Program Director, LACNETS For more information, please visit www.LACNETS.org. @LACNETS (Facebook, Twitter, Instagram) Video produced by tvplive.com. 2019 LACNETS NET Patient Conference at Cedars-Sinai 2018 Conference at UCLA Health Playlist >>> 2017 Conference at City of Hope Playlist >>> 2016 Conference at Cedars-Sinai Playlist >>> 2015 Conference at Cedars-Sinai Playlist >>> < Back to Topics Next Topic >

Lung NET Resources WATCH Click here to download the presentation slides from the above video. Click here to download the presentation slides from the above video. Click here to download the presentation slides from the above video. Lung NET specialist Dr. Sukhmani Padda gives an update on lung NETs. EPISODE 26: WHAT TO KNOW ABOUT LUNG NETS What are lung NETs? What is DIPNECH? How is lung NET similar or different from lung cancer? Dr. Vineeth Sukrithan from Ohio State University Comprehensive Cancer Center gives a comprehensive overview of lung NET and DIPNECH, including the work-up and treatment options. He also discusses open clinical trials and exciting advances in lung NET research on the horizon. LISTEN NOW LISTEN OTHER RESOURCES Lung NET infographic, courtesy of Neuroendocrine Tumor Research Foundation. ADDITIONAL LUNG NET RESOURCES: NetWise Podcast - Lung NETS Episode Our Cancer Stories - "Neuroendocrine Tumors of the Lung" Our Cancer Stories - "What is Lung Carcinoid?" Our Cancer Stories - "Key Statistics for Lung Carcinoid Tumor" Our Cancer Stories - "Hormonal Syndromes Caused by Lung Neuroendocrine Tumors" OPEN CLINICAL TRIALS: PRRT TRIAL for lung NET: phase 2 trial studying the effect of lutetium Lu 177 dotatate (PRRT) compared to the usual treatment (everolimus) in treating patients with somatostatin receptor positive ADVANCED bronchial Neuroendocrine Tumors OTHER CLINICAL TRIALS FOR LUNG NETS: Lung/Bronchial NETs TREATMENT GUIDELINES & RESEARCH ARTICLES: 2021 CommNETS/NANETS Guidelines for the Diagnosis and Management of Patients With Lung NETs: An International Collaborative Endorsement and Update of the 2015 European Neuroendocrine Tumor Society Expert Consensus Guidelines SPINET Trial Scholarly articles on Lung Carcinoid Tumors (Recommended by Dr. Robert Ramirez) 2022 Review Article by Dr Robert Ramirez et al: A multidisciplinary approach to the work up and management of pulmonary carcinoid tumors and DIPNECH: a narrative review 'OUR CANCER STORIES' SURVEY Researchers are currently conducting an international study approved by the NUS Ethics Committee (NUS-IRB-2023-320) to examine the relationship between emotional well-being and recovery for cancer patients. Our Cancer Stories' goal is to gather anonymous insights from individuals (aged 30-70) diagnosed with prostate and lung cancer about their personal experiences. To ensure the success of this research, they are seeking cancer patients willing to share their stories through an online survey with the option of reimbursement of $20 USD upon completion. This is a confidential, online survey that will take about 30 minutes to complete. Survey responses will be used to create stories that will be published on a website called Our Cancer Stories (www.ourcancerstories.com ). These stories are aimed at providing readers (e.g. cancer patients, survivors, caregivers, and those with loved ones affected by cancer) with information useful in making informed decisions in fighting cancer, while providing comfort and solidarity. PATIENT STORIES NET Patient Dorinda Shares Her Journey "In Sickness and in Health" shares Lauren's journey. Lauren is a former beauty pageant queen turned professional dancer for the Sacramento Kings.

<< Go back to the Podcast page EPISODE 5: TREATMENT FOR NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE What are the current treatment options for NETs? How do I know what treatments I should be on? In our fifth episode, NET expert and Medical Oncologist Dr. Randy Hecht of UCLA Health answers ten common questions about current NET treatment options (including lanreotide, octreotide, everolimus, and PRRT), as well as future treatment options. MEET DR. RANDY HECHT 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. TOP 10 GI QUESTIONS 1. Do all NET patients need to be on lanreotide or octreotide? What’s the difference between lanreotide and octreotide? 2. How do I know what treatments I should be on? 3. My doctor has recommended I take everolimus (afinitor) or CAPTEM. What is the difference and how would I make a decision? 4. My doctor has recommended I take everolimus (afinitor) or PRRT. How would I make that decision? 5. Once I have had PRRT, what would I do next if the tumor progresses? 6. How would I find out what new treatments are on the horizon for NET? 7. Would there be any treatments that negate future choices of treatment options or clinical trials? 8. What does it mean if I have bone mets? (Is my prognosis worse? Does it mean my tumors are getting worse?) 9. If you do not have Somatostatin receptors, should you still have the Gallium DOTATATE scan and if not, what tests/scans do you recommend? 10. Which treatment or other development in this field are you most excited about? What hope might you offer to those living with NET or their loved ones? 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

<< Go back to the Podcast page EPISODE 39: NEN TREATMENTS: FOCUS ON LIVER-DIRECTED THERAPIES PART II: Intra-Arterial Techniques and Sequencing Download a Transcript of this Episode >>> ABOUT THIS EPISODE In this 2-part series, Dr. Osman Ahmed from University of Chicago covers liver-directed therapies for neuroendocrine neoplasms (NENs or neuroendocrine cancer). In this second episode, he details the embolization techniques including bland embolization (TAE), chemoembolization (TACE), and radioembolization (TARE, SIRT, y90). He discusses decision-making, sequencing, and follow-up after these procedures. MEET DR. OSMAN AHMED Osman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage. In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology. Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology. TOP TEN QUESTIONS ABOUT LIVER-DIRECTED THERAPY, INCLUDING INTRA-ARTERIAL TECHNIQUES & SEQUENCING: What do patients need to know about bland embolization (TAE)? a. What are the possible side effects? b. How do the size of beads play a role? c. When is this recommended? d. Do you always do both sides of the liver? If so, what is the timing and why? e. What is the recovery like? What is post-embolization syndrome? What do patients need to know about chemoembolization (TACE)? a. What drug is used & does this go through the whole body? b. What is the recovery like? What are the possible side effects? What do patients need to know about radioembolization (TARE, SIRT, y90)? a. In the era of PRRT, is there a concern with using y90 or radioembolization? How is the approach and techniques used with radioembolization different than how it was done in the past? Is there a total lifetime limit of radiation? b. What is the recovery like? What are the possible side effects? Is there a limit to how much LDT one can do? Can they be repeated? How does one decide between the various types of liver-directed therapies? Is there a sequencing to treatments? Are there certain treatments that make you ineligible for other treatments? [PRRT, chemo, y90 etc] If someone has had surgery such as a Whipple or surgery or procedures involving the bile duct such as a stent in the bile duct or surgical removal of part of the bile duct, how does this weigh into the decision-making process for LDT? How do you determine if the treatment “worked?” What is the follow up like? What scan might you do and in what timing? What do you see as the future of liver-directed therapy in neuroendocrine cancer treatment? RESOURCES LISTEN Episode 38: NEN Treatments: Focus on Liver-Directed Therapies (Part I: Overview and Ablative Techniques Including Histotripsy) WATCH LACNETS Liver-Directed Therapy Videos 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

Travel & Lodging 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