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Medical Advisory Council ABOUT MAC Our Medical Advisory Council (MAC) consists of distinguished neuroendocrine cancer experts committed to improving the lives of NET patients through multidisciplinary patient care, scientific research, and peer and patient education. Together, we aim to improve access to expert care, critical information, and groundbreaking medical treatments. MEET OUR COUNCIL CALLISIA CLARKE, MD Chief of MCW Surgery, Medical College of Wisconsin Dr. Clarke is Chief of Surgical Oncology and Associate Professor of Surgery at the Medical College of Wisconsin with a focus on tumors of the upper gastrointestinal tract, sarcomas, melanomas and regional therapies for advanced malignancies. She specializes in hepato-pancreatic-biliary malignancies, primary and metastatic neuroendocrine tumors, melanoma and sarcoma. Her research efforts focus on personalized cancer care and targeted approaches in pancreatic neuroendocrine tumors. Dr. Clarke also serves on the Executive Committee of the Association for Academic Surgery and is the Chair of the North American Neuroendocrine Tumor Society (NANETS) Mentoring and Early Career Development Committee. President Biden recently announced she will be appointed as a Member of the National Cancer Advisory Board. Dr. Clarke will play a key role in guiding the Director of the National Cancer Institute in setting the course for the national cancer research program and help advance breakthroughs to prevent, detect, and treat diseases like cancer. JAYDIRA DEL RIVERO, MD Endocrinologist, Oncologist, National Cancer Institute Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center. Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors. She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology. Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials, and patient reported outcome measures. Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma. ALEXANDRA GANGI, MD Surgical Oncologist, Cedars-Sinai Medical Center Dr. Alexandra Gangi is a board-certified surgical oncologist at Cedars-Sinai Medical Center in Los Angeles. Dr. Gangi completed a general surgical residency at Cedars-Sinai and completed her surgical oncology fellowship at the H. Lee Moffitt Cancer Center in Tampa, Florida. She currently serves as the director of the Gastrointestinal Tumor and Cancer Regional Therapies Programs with specialization in Pancreatic and GI Neuroendocrine tumors, Metastatic colorectal cancer, and Peritoneal Surface Malignancies. Her research focuses on understanding GEPNET heterogeneity between and within tumors subtypes and mechanisms of chemotherapy induced liver injury. LINDA (LINDY) GARDNER, MSN, RN, VA-BC Lead Nurse, Nuclear Medicine, UCLA Health Lindy has over two decades of Interventional Radiology experience prior to transitioning over to Nuclear Medicine in March of 2017. She obtained her RN qualification in 1993 from John Moores University of Liverpool, (LJMU) United Kingdom, she is a graduate from the University Of Dundee, Scotland where she received her Bachelors, and Master’s of Science in Nursing. In her Nuclear Medicine role Lindy is the lead nurse for the Peptide Receptor Radionuclide Therapy (PRRT) program, from the expanded access program (EAP) thru to the FDA approved commercial program. She has presented this program to a national and international audience; her skills are utilized as an expert liaison for institutions commencing the PRRT program, focusing on the patient experience, education, and therapy administration. Lindy is the nursing pillar lead for The International Center for Precision Oncology foundation (ICPO), with her focus on education, support and navigation for the NET patient journey. She is also the lead nurse for Radio-Ligand Therapy (RLT) for prostate cancer within Theranostics at UCLA, covering both clinical application and research. Lindy is a member of the Association for Radiologic and Imaging Nursing (ARIN), and the Association for Vascular Access (AVA), holding her board certification in vascular access (VACC). She sits as a member on The Healing NET Scientific Advisory Committee. J. RANDOLPH HECHT, MD Medical Oncologist, UCLA Health Dr. Hecht is a Professor of Clinical Medicine in the David Geffen School of Medicine at UCLA School of Medicine. He holds the Carol and Saul Rosenzweig Chair for Cancer Therapies Development and is the Director of the UCLA Gastrointestinal Oncology Program. Dr. Hecht attended medical school at Eastern Virginia Medical School. He took his internal medicine residency at Northwestern and completed fellowships in gastroenterology research at the University of Chicago, and in gastroenterology and medical oncology at UCLA. Dr. Hecht is an internationally known clinical and translational researcher in the field of gastrointestinal cancers. He has published widely on the molecular biology, early detection, and treatment of gastrointestinal malignancies. He has lead and is currently directing small trials with new molecules as well as large international randomized trials. Current ongoing research includes preclinical models of therapy with biological agents, early studies with gene therapy vectors and tyrosine kinase inhibitors, and leading phase II and phase III trials with novel agents. ANDREW HENDIFAR, MD Medical Oncologist, Cedars-Sinai Medical Center The current research focus of Andrew Hendifar, MD, is on developing new therapies for pancreatic cancer and neuroendocrine tumors. Dr. Hendifar has helped form multidisciplinary teams that specialize in the treatments of pancreatic cancer, and carcinoid and neuroendocrine tumors. Dr. Hendifar is the primary investigator for several groundbreaking therapies, including radioimmunotherapy for neuroendocrine tumors, anti-inflammatory therapy for pancreatic cancer and novel approaches to cancer cachexia. His national roles include SWOG GI Committee Member and a member of NIH Neuroendocrine Tumor Task Force. He also serves on the steering committee member for the Precision Promise Consortium and chairs the associated Supportive Care Committee. At Cedars Sinai he leads the Gastrointestinal Disease Research Group and is the founding Director of the Hematology and Oncology Fellowship Program. DANENG LI, MD Medical Oncologist, City of Hope Daneng Li, M.D., is an associate professor in the Department of Medical Oncology & Therapeutics Research at City of Hope Comprehensive Cancer Center, specializing in treating gastrointestinal cancers. Dr. Li currently leads the liver tumors program and is also the co-director of the Neuroendocrine Tumor Program at City of Hope. Dr. Li embraces a multidisciplinary approach to treatment of patients with neuroendocrine tumors. He leads several clinical trials focused on improving outcomes for patients with NETs and works closely with scientists in the development of the next generation of novel therapeutics. Nationally, he has served on several NET committees including the NANETS Research Committee, NANETS Continuing Medical Education Committee, and the Patient-Physician Communication Task Force for the Healing NET Foundation, allowing him to work closely to support NET patient advocacy programs. For all his efforts, he was honored as a recipient of the inaugural 40 Under 40 in Cancer Award during the American Society of Clinical Oncology annual meeting in 2018.

In Loving Memory Giovanna Joyce Imbesi Our founder, hero & inspiration to live life fully… Giovanna Joyce Imbesi, LACNETS founder, was a patient advocate, pianist, and composer based in Los Angeles. She lived fully with neuroendocrine cancer for 14 years and served as a model of compassion, love and kindness. In 2005, after several years of misdiagnosis, Giovanna was diagnosed with metastatic small bowel neuroendocrine cancer. She understood that those with a rare cancer may feel isolated, and sharing similar experiences may lessen the fear of the unknown and offer comfort. It became her mission to help others in the NET community. Her vision was to create a community for a healing exchange of educational resources and emotional support for all affected by neuroendocrine cancer. Against all odds, Giovanna went on to receive an MBA from UCLA Anderson School of Management with the sole intent of launching LACNETS. In 2012, she founded the non-profit GeneratePossibility and the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) program. Giovanna's physician, Dr. Edward Wolin, was the inaugural speaker for the first LACNETS' patient education meeting. Through LACNETS, Giovanna's aspiration was to create a more "NET-fluent" world. She wanted to change the narrative from associating NET with famous people who die from the disease to raising awareness of the more than 180,000 people who live with the disease. Giovanna wrote, "Each one of us has the ability to help change those numbers in our own community. There are more opportunities to share more about NET and add one more person to the extended global family of NET awareness." Giovanna helped create tools, such as NET VITALS, to improve communication between patients and physicians. She believed that increased awareness equates to more research, which leads to improved treatments and patient outcomes. Giovanna received the 2016 Monica Warner Advocacy Award, as well as the 2019 Cedars-Sinai Patient Leadership Award , for her inspiring work in patient advocacy. Giovanna Joyce Imbesi passed away peacefully on November 24th, 2019. On her last day, Giovanna said with great pride that her greatest legacy was LACNETS. She felt blessed by this community. Giovanna often said, "Aging is a privilege." She celebrated life and connectedness. She believed in practicing gratitude, even appreciating the difficult times. She was grateful for the thousands of neuroendocrine tumor physicians, researchers and healthcare providers who work on the behalf of NET patients every day. The Neuroendocrine Cancer Foundation works daily to honor Giovanna's vision by serving the NET community she established and helping others to live life richly and fully with NET like she did. Participate in the Vision Watch the tribute video honoring Giovanna Joyce Imbesi by Rich Tamayo, Emmy Winning Video Producer & a friend of LACNETS GENERATE POSSIBILITY For Giovanna, music was medicine. Her musical compositions can be heard on "Short Stories - piano music for healing, meditation & relaxation" recorded while in recovery from neuroendocrine cancer surgery. These pieces were inspired by her belief in the healing power of music as a vital element of our well-being. She frequently contributed music to NET causes. A frequent speaker on living with neuroendocrine cancer and the healing power of music, Giovanna was featured as one of six leaders in Integrative Cancer Care at the 2018 Symington Public Forum at Commonweal. We hope that Giovanna's song and her own words, "Give Me Peace," bring some comfort and peace. I’ll always be grateful for Giovanna and her work through LACNETS (now Neuroendocrine Cancer Foundation). The information I learned and connections I made through the educational meetings changed the course of my medical care and helped me to get back to a place where I could enjoy life. — Tom, NET Patient

NET Groups & Organizations PATIENT ADVOCACY ORGANIZATIONS The Carcinoid Cancer Foundation is the oldest nonprofit carcinoid/and related neuroendocrine tumor organization in the United States, founded in 1968. The mission of this foundation is to increase awareness and educate the general public and healthcare professionals regarding carcinoid and related neuroendocrine tumors (NETs), to support NET cancer patients and their families, and to serve as patient advocates. Visit www.carcinoid.org to learn more. The Healing NET Foundation mission: To optimize the care of those with neuroendocrine cancer through the education of and collaboration among physicians, health care providers, patients, and caregivers. Healing NET offers free downloadable guides for patients, healthcare professionals and high grade neuroendocrine tumors: Navigating the NET Patient Journey Neuroendocrine Tumors: A Primer for Healthcare Professionals High-Grade Neuroendocrine Cancers Visit www.thehealingnet.org for more information. The mission of the Neuroendocrine Tumor Research Foundation (NETRF) is to fund research to discover cures and more effective treatments for neuroendocrine cancers. To achieve rapid discovery of cures, the NET Research Foundation directs its donations to fund breakthrough scientific research of neuroendocrine cancers. Click here to complete the request form for the NETRF Guide for NET Patients & Families. Learn more: www.NETRF.org NorCal CarciNET is a patient support group in Northern California. Their mission is to help those with neuroendocrine tumors and carcinoid to share challenges and experiences, learn about prognosis and treatments, find information, and improve communications between the medical community, patients and caregivers. For more information: www.norcalcarcinet.org The Neuroendocrine Cancer Awareness Network (NCAN) is a non-profit organization dedicated to raising awareness of Neuroendocrine Cancer, providing support for caregivers and people with NETs, and funding for NET cancer research. Since 2003, it has been their mission, or as they like to say, their passion, to educate and support the NET community as a whole. To learn more, visit www.netcancerawareness.org/patient-info . The International Neuroendocrine Cancer Alliance’s mission is to be the global advocate for neuroendocrine cancer patients. INCA provides NET patient information packs in 10 languages for patients, health professionals, and anyone wanting to better understand NETs. Go to incalliance.org to learn more. The Carcinoid-NeuroEndocrine Tumour Society (CNETS) – Canada was formed in 2007 to assist the Canadian community, primarily patients, with this type of disease. For more information, visit cnets.ca ; check out the NET reference guide. NET Patient Foundation is a UK wide charity set up to help, inform and guide anyone affected by Neuroendocrine Cancer. To learn more, visit www.netpatientfoundation.org . Association for Multiple Endocrine Neoplasia Disorders (AMEND) - A patient group set up in 2002 to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine tumors. Click here to download the AMEND guide to starting a family. MEDICAL SOCIETY The North American Neuroendocrine Tumor Society (NANETS) is dedicated to educating medical professionals on the diagnosis and treatment of NET disease and supporting research and innovation in the field. 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. NANETS provides the following educational programs and resources for medical providers: Regional NET education programs Monthly virtual education programs Annual NET Medical Symposium NETCAST podcast NET Guidelines to support the treatment and management of NET For patient resources, visit NANETS Patient Resources. OTHER PRRTinfo.org is a site for patients considering PRRT (Peptide Receptor Radionuclide Therapy) treatment in Germany written by patients for patients. www.PRRTinfo.org Inspired by responses to the Carcinoid Impact Survey, The About Carcinoid Community was created to connect people who are living with Carcinoid Syndrome. Ask questions, receive answers, and access support tools all in one online community. Learn more here: www.aboutcarcinoid.com Ronny Allan, Patient advocate and blogger - International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping Neuroendocrine Cancer Patients. Learn more: ronnyallan.net DRLC’s Cancer Legal Resource Center (CLRC) was founded in 1997 to address the legal issues faced by people with cancer, unique in the larger disability community, and is committed to providing information and resources about cancer-related legal issues to members of the cancer community across the nation. CLRC is the only national dedicated center for patients, survivors, caregivers, and health care professionals to access confidential cancer-related legal information and resources at no cost. More info here: www.cancerlegalresources.org . Triage Cancer provides education on legal and practical issues that may impact individuals diagnosed with cancer and their caregivers. Triage Cancer provides education on issues related to work, insurance, disability benefits, finances, estate planning, medical decision-making, and more. Offers free in-person and online educational events, materials, animated videos, and state-specific resources. Provides free one-on-one help to assist individuals understand their options and possible next steps, as well as CancerFinances.org , which helps people navigate finances after cancer. For more information, visit TriageCancer.org . American Cancer Society Personal Health Manager - This organizational portfolio for newly diagnosed patients – with information tailored to their type of cancer – can help patients and caregivers make educated health decisions and get connected to local resources and services. bit.ly/ACS_Resource (Free Personal Health Manager kit for patients) National Comprehensive Cancer Network - Guidelines for Patients Click here to download NCCN Guidelines for Patients.

Our Team KAVYA VELAGAPUDI, MSW Executive Director and Board Member Kavya is the Executive Director and Board Member of the Neuroendocrine Cancer Foundation. Since 2015, Kavya has been involved with the organization providing fundraising and management support. She is a fundraising and management professional with 15 years of experience generating revenue and resources for various nonprofit organizations. With a Master's in Social Welfare and a concentration in Non-Profit Administration & Policy Advocacy, Kavya has a unique blend of development, management, and clinical skills. Before launching her independent fundraising consultancy Honu Fundraising, she was the Development Director of the International Museum of Women, now part of Global Fund for Women, in San Francisco. Before joining the Museum, Kavya was the Western Region Director of Starlight Children’s Foundation in Los Angeles overseeing all development, communications, and program services in Starlight’s Western Region. Contact: Kavya@LACNETS.org LISA YEN, NP, NBC-HWC Director of Programs & Outreach Lisa Yen was a nurse practitioner hospitalist for over 12 years prior to her husband’s diagnosis with advanced, metastatic pancreatic NET in January 2015. She brings a unique perspective to the Neuroendocrine Cancer Foundation as a medical professional and a caregiver. Once a regional support group, LACNETS has grown into a national NET patient advocacy group that now supports the Carcinoid Cancer Foundation, founded by Dr. Richard Warner. As the Director of Programs & Outreach, Lisa curates educational content for the Neuroendocrine Cancer Foundation’s virtual and in-person events, podcasts, annual conferences and symposiums, video resource library and Clinical Trials Guide. She facilitates patient and caregiver support groups and a support line. She has developed a peer mentorship program (NETCONNECT ), a health coaching program and wellness retreats . Lisa also co-created NET VITALS with LACNETS founder Giovanna Joyce Imbesi and City of Hope’s Dr. Daneng Li. In addition to developing content, Lisa attends national and international medical and scientific conferences to stay apprised of the latest in NET advances. She collaborates with NET experts, researchers, partners and patient advocates to improve access to education and care. Her passion is to help improve the quality of life for those affected by NET. Lisa was the recipient of the 2020 Monica Warner Award. She serves as treasurer on the executive board of INCA. She is a member of the NANETS NETPact Committee . Lisa earned a BA in psychology from Wheaton College in Illinois, a BSN from Loyola University of Chicago, and an MSN from UCLA’s School of Nursing’s Acute Care Nurse Practitioner Program. Through Vanderbilt, she became a Nationally Board-Certified Health and Wellness Coach (NBC-HWC) and is currently on the Vanderbilt and VA faculty, where she trains healthcare professionals and health coach trainees. When Lisa is not serving the NET community, she enjoys spending time with her husband, Tom, and their rescue dog, Skyler. She also enjoys traveling, snowboarding, and live theater. Watch Lisa and her husband Tom describe how they made decisions in this 2017 LACNETS video. Contact: Lisa@LACNETS.org HEATHER DAVIS Associate Director of Advocacy & Outreach Heather Davis initially joined the Neuroendocrine Cancer Foundation as a NETCONNECT mentor for caregivers in 2019 after finding LACNETS to be an invaluable collective of medical resources, experts and caring support. Heather has nearly 20 years of account management experience in marketing. She has also served as her mother’s primary medical advocate since her pancreatic neuroendocrine cancer diagnosis in 2012. She earned her Bachelor’s Degree in Journalism/Advertising and Sociology from San Diego State University. As the Associate Director of Advocacy and Outreach, she is eager to expand NET awareness and connect patients, caregivers and providers to this exceptional community. She is passionate that knowledge and collaboration make all the difference in both the quality of care and the quality of life for those affected by this rare disease. Heather enjoys learning and exploring new things with her nephews and having fun with family and friends. Contact: Heather@LACNETS.org BOARD OF DIRECTORS DONNA GAVIN Board President Donna Gavin is the sister of LACNETS founder Giovanna Joyce Imbesi and has been a board member of GeneratePossibility.org/LACNETS (now the Neuroendocrine Cancer Foundation) since 2009. Donna is dedicated to impactful work and has many years of experience in non-profit management and leadership. With a background in finance and law, she has served on boards and constituent groups of non-profit organizations for over 20 years. She is currently a senior grants administrator and paralegal at Cold Spring Harbor Laboratory on Long Island, New York, a scientific research institution and National Cancer Institute designated Cancer Center. Donna holds a BA from Williams College and a diploma in paralegal studies from New York University. MARY DONLEVY Board member Mary Donlevy joined the LACNETS Board in 2020. She brings the patient perspective as she has been thriving despite living with pancreatic neuroendocrine tumor since 2005. She has been close friends with LACNETS Founder Giovanna Joyce since 2010 and involved with LACNETS (now Neuroendocrine Cancer Foundation) since then. Mary has served as a NET CONNECT mentor and Advisory Committee member. She has been actively involved in the monthly meetings and virtual NET support groups. Mary received her Bachelor's Degree in Communications from University of San Diego and has over 10 years of medical and sales training. Her passion is to help those dealing with this difficult diagnosis and still enjoy a very full and active life. She is the mother of four children, two of which are identical twins, born after her cancer diagnosis. Mary enjoys ocean swimming, yoga and traveling with her husband and children in her free time.

<< 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

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

Lanreotide + Octreotide Resources SOMATULINE DEPOT (LANREOTIDE) RESOURCES Somatuline Depot Downloadable Patient Support Guides Somatuline Depot (Lanreotide) Copay Assistance/Home Injections: Click here to learn more , OR CALL (866) 435-5677 Ipsen - GEP-NETs Network - Injection Map SANDOSTATIN LAR DEPOT (OCTREOTIDE) RESOURCES Novartis - Patient Resources Novartis - Universal Copay Program Patient Assistance Now Oncology Sandostatin LAR Depot (Octreotide) Copay Assistance: Novartis - Patient Assistance Foundation Enrollment Novartis - Universal Copay Program or call 1-800-277-2254 READ 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" LISTEN Podcast Episode 32: Focus on Somatostatin Analogues (SSAs)

IL13Rα2 CAR T Cell Study for Solid Tumor Cancers << Back Gene Modified Immune Cells (IL13Ralpha2 CAR T Cells) After Conditioning Regimen for the Treatment of Stage IIIC or IV Melanoma or Metastatic Solid Tumors IDENTIFIER ( ClinicalTrials.gov ) : NCT04119024 DRUG/TREATMENT : IL13Ralpha2 CAR T Cells PHASE : 1 STATUS : Recruiting SPONSOR : Jonsson Comprehensive Cancer Center DESCRIPTION: 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 This clinical trial investigates a novel gene therapy (IL13Ralpha2 CAR T cells) approach for advanced melanoma and other solid tumors. It aims to assess the safety and effectiveness of gene-modified immune cells targeting cancer cells. The trial seeks to determine the safety and potential effectiveness of IL13Ralpha2 CAR T cells in fighting cancer. By evaluating the dose and the IL13Ralpha2 CAR T cells ability to attack cancer cells, researchers at UCLA, Stanford, and City of Hope aim to improve treatment options for advanced cancers. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT : UCLA / Jonsson Comprehensive Cancer Center Principal Investigator: Dr. Antoni Ribas, MD, PhD; UCLA Coordinator: Christy Sidhu; UCLA EMAIL: PICICenterResearch@mednet.ucla.edu PHONE: 310-206-5087 RESOURCES : Patient Flyer Patient Information Sheet

<< Go back to the Podcast page EPISODE 21: WHAT TO KNOW ABOUT SMALL BOWEL NETS Download a Transcript of this Episode >> ABOUT THIS EPISODE How are small bowel NETs diagnosed, treated, and monitored? How is it different from other types of NETs? What are some exciting new treatments for small bowel NETs? NET oncologist Dr. David Zhen of Fred Hutchinson Cancer Center in Seattle answers 10 common questions about small bowel NETs. MEET DR. DAVID B. ZHEN Dr. David Zhen is a medical oncologist who specializes in treating patients with gastrointestinal cancers. His research centers around the development of clinical trials evaluating new therapies and combination approaches for the treatment of patients with gastrointestinal cancers, particularly for neuroendocrine and gastroesophageal cancers. He is also conducting research to understand the interactions of the immune system in gastrointestinal cancers and how this can be manipulated to improve upon the response to immunotherapy drugs called checkpoint inhibitors, which block a braking system that cancers use to tamp down the immune response. TOP 10 QUESTIONS 1. What are small bowel NETs? Where are they located? 2. How are small bowel NETs found? What are the symptoms of a small bowel NET? 3. What types of labs, scans, or testing is done to determine if someone has a small bowel NET? Why are small bowel NETs not found in routine endoscopy or colonoscopy? 4. What are some ways that small bowel NETs differ from other types of NETs? What makes small bowel NETs unique from other types of NETs? 5. How do you decide if the small bowel NET(s) can be surgically removed? What type of surgeon would make that determination? 6. How are small bowel NETs treated medically? 7. How are treatments sequenced? 8. How are the treatments different from other NETs? 9. What are some exciting new treatments in the pipeline for small bowel NETs? What are clinical trials we should be aware of for small bowel NETs? 10. How are small bowel 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 small bowel NETs? Bonus: What words of hope would you like to share with the NET community? RESOURCES WATCH "Systemic Therapy: GI NET" - 2020 LACNETS Patient Education Conference Recording of Dr. Zhen Visiting the LACNETS Support Group Patient Story: From Diagnosis to Patient Advocacy - 2022 LACNETS NET Patient Conference NET Patient shares how she has learned not just to survive, but also to thrive . LISTEN Listen to the NETRF NETWise Special Episode: Small Bowel NET + Take the LACNETS Quiz READ 2017 The Surgical Management of Small Bowel Neuroendocrine Tumors: Consensus Guidelines of the North American Neuroendocrine Tumor Society 2017 The North American Neuroendocrine Tumor Society Consensus Guidelines for Surveillance and Medical Management of Midgut Neuroendocrine Tumors 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

Grief & Loss Resources NEW TO LACNETS? Support for those who have experienced the loss of a loved one to neuroendocrine cancer. Included below is a library of grief and loss support groups, information, and resources. Grief is the price we pay for love. - Queen Elizabeth II Organizations Offering Resources for Caregivers ORGANIZATIONS OFFERING RESOURCES FOR CAREGIVERS LACNETS VIRTUAL NET CAREGIVER SUPPORT GROUP Join LACNETS on the last Saturday of every month. This virtual group is a safe space where NET caregivers can come together for support and community. Click here to learn more OUR HOUSE GRIEF SUPPORT CENTER OUR HOUSE provides essential grief support.Their programs serve adults, teens, children and toddlers, which include grief support groups that are specific to the griever. Click here to learn more SIMMS/MANN UCLA BEREAVEMENT GROUP This group will provide a unique opportunity for those spouses and partners who have experienced a recent loss of their loved ones to share and heal with others who truly understand. Click here to learn more CANCER SUPPORT CENTER BEREAVEMENT SUPPORT The Cancer Support Community does not only to meet the needs of cancer patients and survivors, but also to help the family members and friends who are facing cancer alongside a loved one. Click here to learn more Click here for more resources in the Los Angeles region. Grief resources for children Books on Grief & Loss READ The Dreamer's Book of the Dead A Soul Traveler's Guide to Death, Dying, and the Other Side The American Book of Living and Dying Lessons in healing spiritual pain, drawing from personal experiences Life After loss: Conquering Grief A unique approach to understanding and overcoming grief The Grief Recovery Handbook An action program for moving beyond death Bearing the Unbearable Love, Loss, and the Heartbreaking Path of Grief Click here for the full list of recommended books about grief and loss Videos WATCH How to ask for, accept and get the help you need Kim Hamer, Professional Speaker & Author Watch the Video What matters most? (Advanced care planning) Redwing Keyssar, RN, Author Watch the Video Click here for Caregiver Resources LISTEN "Mental Health & NETs" with Dr. Karen Kersting Click here for more information about this episode >>> "Palliative Care" with Dr. Chandana Banerjee Click here for more information about this episode >>> Patient Stories PATIENT STORIES NET Patient Beth shares her inspiring story of strength & resilience. Watch the Video EXCERPTS, POEMS & CONVERSATIONS Elizabeth Gilbert on Grief “How do you survive the tsunami of Grief? By being willing to experience it, without resistance. By being willing to feel everything. By being willing to accept the unacceptable. The conversation of Grief, then, is one of prayer-and-response.” Download the full excerpt Grief “…like a brick in your pocket” “I don’t know. The weight of it, I guess. At some point it becomes bearable. It turns into something you can crawl out from under, and carry around — like a brick in your pocket. And you forget it every once in a while, but then… Download the full excerpt A special thank you to Michael Eselun, BCC , Bronwen Jones, MTheol , and the NETCONNECT team for recommending many of these resources. Click here to read the five stages of grief

< Back to the upcoming events page Learn about Palliative Care: what it is, what it is not, and how it may help those affected by neuroendocrine cancer. Dr. Chandana Banerjee, palliative care and hospice specialist from the City of Hope Cancer Center in Los Angeles, demystifies these topics. ABOUT CHANDANA BANERJEE, M.D., M.P.A., HMDC Chandana Banerjee, M.D., M.P.A., HMDC, is the dean, director and designated institutional official for Graduate Medical Education at City of Hope. She is also an associate professor in the Department of Supportive Care Medicine , specializing in hospice and palliative care. She developed the City of Hope Hospice & Palliative Medicine Fellowship. She also established the Cancer Pain Rotation for Kaiser Permanente Los Angeles Hospice & Palliative Medicine Fellowship, which is now part of the core curriculum for the Kaiser Permanente Southern California Hospice & Palliative Medicine fellowship program. Dr Banerjee also developed and directed the End of Life Symposium, which was first held at City of Hope in September 2019 and was endowed by Arthur Riggs, Ph.D. She is the physician lead for Schwartz Rounds at City of Hope and serves as chair on the End of Life Option Act Subcommittee. She is also a member of the Continuing Medical Education and the Ethics and Quality of Life committees. She co-founded the City of Hope Expressions of Hope initiative in partnership with Diversity, Equity and Inclusion. She is currently chair-elect of the American Academy of Hospice & Palliative Medicine's (AAHPM) Medical Aid in Dying Special Interest Group. She served as chair-elect, chair and past chair on the AAHPM Humanities and Spirituality Special Interest Group from March 2019-2022. She serves on AAHPM's Editorial Board for the publication AAHPM Quarterly and has served on the assembly's Abstract Review Board. She is a reviewer for evidence-based research articles in hospice and palliative care submitted to McMaster University in Canada. Dr. Banerjee has written and published numerous articles and book chapters and spoken at conferences nationally and internationally. She is the editor for an upcoming book by Springer Publishing's CTAR series exploring views on end-of-life care, death, burial and bereavement within different cultures and religions. She also sits on the board of directors for Compassion & Choices, an organization dedicated to end-of-life issues. Dr. Banerjee is a contributing member on the National Comprehensive Cancer Network Fatigue Panel. Her leadership activities in education include excellence in teaching, faculty development and mentoring, and curriculum and program development. Dr. Banerjee earned her undergraduate degree with an honors scholar designation from University of Connecticut. She received her master's degree in public administration from New York University and her medical degree from Saba University School of Medicine. She completed her residency in pediatrics and her fellowship in adult hospice and palliative medicine from Kaiser Permanente Los Angeles. She is also a Hospice Medical Director Certified. Dr. Banerjee was recently selected as a Health Equity Scholar into the prestigious Cambridge Health Alliance - Center for Health Equity Education & Advocacy Program’s 2021-2022 Cohort. Dr. Banerjee loves to write poetry and her first collection, "Ashen Leaves," was published in July 2020. Her second book of poems, "Neruda in Bed," was published in November 2021. The opinions expressed by the guest presenters, as well as the questions asked by the audience, have not been created or suggested by LACNETS or the sponsors of this program. LACNETS does not endorse or promote any of the views, opinions or information provided in this presentation. Audience members should not rely solely on the opinions or information expressed by the guest presenter and should seek guidance and direction from their own medical advisors regarding any choices they make about their health or treatments. THANKS TO OUR SPONSORS

<< Back Lung/Bronchial NETs PRRT Trials Alpha PRRT with Pb-212 (all NET) Alpha PRRT with Ac-225 + Standard of Care in SSTR+ SCLC Alpha PRRT with Pb-212 VMT Lu-177 + Carboplatin, Etoposide, and Atezolizumab in SCLC Lu-177 DOTATATE + Cabozantanib (all NET) Lu-177 DOTATATE vs Everolimus in Lung NETs Other Trials Antibody Drug Conjugate ADCT-701 in Neuroendocrine Tumors and Carcinomas DAREON™- 5: DLL-3 BiTE for Neuroendocrine Cancers DAREON™-9: DLL-3 BiTE + Topotecan in Small Cell Lung Cancer (SCLC) IL13Rα2 CAR T Cell Study for Solid Tumor Cancers Survivin Long Peptide Vaccine (SurVaxM) in Metastatic NETs Nab-sirolimus in Patients With Well-differentiated Neuroendocrine Tumors (NETs)