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NET Glossary/Index NET Reference Guide for Patients & Families by CNETS Download Here Neuroendocrine Tumors: A Primer for Healthcare Professionals by Healing NET Foundation Download Here

<< Go back to the Podcast page EPISODE 34: NET TREATMENTS: FOCUS ON PRRT Download a Transcript of this Episode >>> ABOUT THIS EPISODE What is PRRT? How is it different from the more commonly used radiation treatment? What are the possible side effects? Dr. Riham El Khouli from the University of Kentucky in Lexington discusses common questions and concerns about PRRT and shares some of the latest advances. MEET DR. RIHAM EL KHOULI, MD, PHD Associate Professor of Radiology, UK College of Medicine Chief, Division of Nuclear Medicine/Molecular Imaging & Radiotheranostics (NM/MI&R) Director, Radiotheranostics Program University of Kentucky Dr. Riham El Khouli, MD PhD, is the director of the Radiotheranostics program and Chief of the division of NM/MI&R at the University of Kentucky and an Associate Professor of Radiology, Nuclear Medicine and Molecular Imaging at UK school of Medicine. The Radiotheranostics Program at UK is a multidisciplinary program that provides state of art standard of care clinical radiopharmaceutical therapy (RPT) techniques as well as a robust research program that constantly runs multiple RPT clinical trials aiming to explore new RPT management options for various cancers. Dr. El Khouli is fellowship trained double board certified, ABR and ABNM, academic Nuclear Radiologist with two decades of clinical and research experience. Her research initially focused on the evaluation and improvement of the acquisition and interpretation of advanced MRI techniques such as dynamic contrast enhanced (DCE) MRI, Diffusion weighted imaging (DWI), and 1H MR Spectroscopy in breast cancer. On 2013, Dr. El Khouli started a new journey in Nuclear Medicine, Molecular Imaging and Radioheranostics (NM/MI&R) and completed a nuclear medicine and dedicated PET/CT fellowships. During her new training, her passion toward molecular imaging and PET/CT grew and she participated in multiple nuclear medicine and PET/CT related research projects. Dr. El Khouli is passionate about research and education and active in the field of neuroendocrine tumor. She is one of the key team members of the dedicated biweekly intramural NET tumor boards. She also attended and presented in multiple regional NANETS and NET awareness group meetings (NCAN). Dr. El Khouli serves as a peer reviewer for multiple prestigious Journals such as Radiology and Radiographics, among others, and is an active member of the Radiologic Society of North America (RSNA), Society of Nuclear Medicine and Molecular Imaging (SNMMI), and the American College of Radiology (ACR). She serves as an active member of the RSNA Awards Committee, RSNA Scientific Abstract Review Committee, and Radiographic NMMI review panel committee. Dr. El Khouli is an active panel member of multiple ACR Appropriateness Criteria Panels. TOP TEN QUESTIONS ABOUT NET TREATMENTS: What is PRRT? How does it work? What is theranostics and what does it mean? What are the terms radiotheranostics, radiopharmaceutical, radioligand therapy, PRRT? How do you determine who is eligible for PRRT? When is PRRT given in one’s treatment journey? How does PRRT differ from other treatments? What are the common side effects of Lutathera? Does Lutathera have long-lasting effects? Would receiving Lutathera affect one’s blood counts? How might Lutathera affect one’s liver function? When, if ever is there concern about liver failure? How might PRRT affect my quality of life and my day-to-day ability to work and function? What is the risk and effects of radiation with receiving Lutathera? What precautions do I need to follow? Can I hug my child? Can I pet my dog? Would receiving Lutathera cause someone to be immunocompromised? How to you decide who should get PRRT? What is peritoneal disease and how effective is PRRT with peritoneal disease? How do you assess the response to PRRT? What advances in PRRT are you most excited about? RESOURCES PRRT Clinical Trials PRRT Resources WATCH May 2024 LACNETS Educational Event with Dr. Aman Chauhan: "High Grade Neuroendocrine Neoplasms & Small Cell Lung Cancer" 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

Patient & Caregiver Stories Watch inspiring stories of strength and resilience from patients and caregivers. NET Patient Karla shares her inspiring story in "Falling Flat on my Faith." NET Patient Ilka and her son Shane share their inspiring journey. NET Patient, Beth, shares her inspiring story of strength and resilience titled “A Shared Experience.” NET Patient Kelli shares how she has learned not just to survive, but also to thrive. NET patient, Eric, shares about his journey and decision-making. NET Patient, Kelli Edwards, shares her experience with PRRT. NET patient, Shaunie, & her daughter/advocate, Heather, share about their experience with PRRT. NET patient, Mary, shares about "scan-xiety," the common anxiety patients sometimes have when undergoing scans. NET Patient, Cindy, shares about her journey living with high grade neuroendocrine cancer. NET Patient, Vivian shares her experience with the LACNETS health coaching program. NET Patient, Laurie, shares about the first year of her NET journey. NET Patient, Tom, shares his experience with PRRT. NET Patient, Brent, shares about symptom management. NET Patient, Cindy, shares how she is thriving as a NET patient. NET Patient, Mary, shares about her experience in a clinical trial (everolimus or Afinitor). NET Caregiver, Jack, shares about his experience as a caregiver to his wife who is living with NET. NET Patient Cindy who is living and thriving with high grade neuroendocrine cancer shares her inspiring story. NET Caregiver Aimee shares what led her to a life of patient advocacy and assisting patients living with pheochromocytomas and paragangliomas. NET Patient Tom shares his experience undergoing multiple rounds of PRRT treatments. NET Caregiver Gilda shares how she has been supporting her husband living with NET NET patient Michel shares how the lack of information and awareness of his diagnosis inspired him to start a patient support group in Mexico. NET Patient Julie shares her path to treatment in hopes of providing guidance to newly-diagnosed patients. NET Patient Denny shares his story of being diagnosed with high grade (grade 3) NET and experience with PRRT. NET Patient Federico shares his story. NET expert Dr. Mark Lewis shares how he was diagnosed with NET and how he has been navigating the patient journey. NET patient Shaunie shares her experience living with Zollinger-Ellison syndrome and a functioning gastrinoma of the pancreas. Visit Our YouTube Channel

NET Testing < Back to Topics 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 35:16 "Understanding NET Diagnosis" with Dr. Chandrasekharan • 2024 #LACNETS Patient Conference 2. "Understanding NET Diagnosis" with #Dr.Chandrasekharan 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. < Back to Topics Next Topic >

<< Go back to the Podcast page EPISODE 14: PALLIATIVE CARE Download a Transcript of this Episode >> ABOUT THIS EPISODE What is palliative care and how does this relate to NET? Palliative care physician Dr. Chandana Banerjee of City of Hope shares insights and tips on communication, coping, and managing grief and loss. MEET DR. CHANDANA BANERJEE 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 assistant clinical 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. Learn more about Dr. Banerjee and her background here. TOP 10 PALLIATIVE CARE QUESTIONS 1. What is palliative care? How is it different from hospice? 2. Who should be in palliative care? Who should not be in palliative care? 3. How does someone ask for palliative care? 4. Give an example of how palliative care can help someone living with NET. 5. What does coping with a cancer diagnosis look like? What suggestions do you have to help with coping? 6. What advice do you have for NET caregivers? 7. What insights or advice do you have to help with communication between NET patients and providers? NET patients and their loved ones? 8. What does end-of-life care planning look like? When should it begin? 9. What does the end of life look like for NET patients? 10. How can one manage grief and loss related to the cancer diagnosis? Click here for Caregiver Resources >> DISCLAIMER LACNETS Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of LACNETS. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

<< Go back to the Podcast page EPISODE 42: NEUROENDOCRINE CANCER STRAIGHT TALK Download a Transcript of this Episode >>> ABOUT THIS EPISODE In this special episode, medical oncologist and NET expert, Dr. Diane Reidy-Lagunes engages in an open and honest discussion on sensitive topics including sexual health, family planning and end-of-life discussions. She also answers common questions regarding cannabis use with cancer as well as the relationship between sugar and cancer. Dr. Reidy shares information and insights from her decades of experience as well as from the award-winning “Cancer Straight Talk” podcast from Memorial Sloan Kettering Cancer Center (MSKCC) she created and hosted, and she relates these topics to NET patients and their loved ones. MEET DR. DIANE REIDY-LAGUNES Dr. Diane Reidy-Lagunes will join the Department of Medicine (DOM) as chief of the Division of Medical Oncology, effective April 1, 2025. In addition to her role with DOM, Dr. Reidy-Lagunes will also hold an appointment as Associate Vice President for Oncology Services for Duke University Health System. Dr. Reidy-Lagunes comes to Duke from Memorial Sloan Kettering Cancer Center (MSKCC), where she served as the vice chair of Medicine focused on coordination of care in MSKCC Regional Care Network. Her previous roles included president of MSKCC’s Medical Staff, associate deputy physician-in-chief for clinical operations in the Regional Care Network, physician liaison for the Patient and Family Advisory Council on Quality, clinical director for the GI oncology service, and co-director of the Medical Oncology/Hematology Fellowship Program in the Department of Medicine. During the COVID-19 crisis in New York City, she served as chief of clinical care as part of the Hospital Incident Command System at MSKCC. Additionally, she is the creator and host of an award-winning monthly podcast called "Cancer Straight Talk" from MSKCC which connects patients to cancer experts with the goal of having evidenced-based conversations on a variety of topics in cancer care. As a researcher, Dr. Reidy-Lagunes focuses on developing methods to integrate molecular-based therapies into the treatment of neuroendocrine and adrenal tumors. She is a member of the National Cancer Institute Task Force on Neuroendocrine Tumors and the National Cancer Care Network Guidelines, and she is a former board member of the North American Neuroendocrine Tumor Society. She has received numerous awards and honors, including the Paul Sherlock Resident Housestaff Teaching Award and recognition as one of Castle Connolly's Top Doctors. TOP TEN QUESTIONS ABOUT EXTERNAL RADIATION THERAPY: What is cancer? Is NET cancer? Should I follow a certain diet? Does sugar feed cancer? Can I exercise if I have metastatic neuroendocrine cancer? What does having neuroendocrine cancer mean for my romantic life? How does it affect dating? What does having neuroendocrine cancer mean for my sexual health? What does having neuroendocrine cancer mean for fertility and family planning? Can I have children? How do I talk to my kids about cancer? How will I know when it’s time for end-of-life discussions? Should I consider cannabis? What advice do you have about improving communication with my doctor? RESOURCES LISTEN MSK’s Cancer Straight Talk Podcast Series with Dr. Diane Reidy Episodes mentioned in this podcast: Episode 2 - Understanding the Basics of the “C-word”: What is Cancer with Dr. Matthew Matasar Episode 6 - Sugar and Cancer: Friend or Foe with Dr. Santosha Vardhana Episode 5 -Making Every Step Count: The Role of Exercise and Cancer Episode 34 - How Exercise Can Help Treat and Prevent Cancer with Dr. Lee Jones Episode 35 - Dating After a Cancer Diagnosis Episode 20 - A Man’s Guide to Sex and Cancer Episode 59 - Preserving Fertility During Cancer Treatment: Options, Costs and Success Rates Episode 56 - How to Talk to Children About Cancer Episode 23 - What’s the Hash on the Little Green Plan (Cannabis) and Cancer? MSK’s Death over Dinner The LACNETS Podcast Episode 37: Supportive Oncology for Neuroendocrine Cancer WATCH DISCLAIMER The Neuroendocrine Cancer Foundation Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment. THANK YOU TO OUR SPONSORS

Join our Health & Wellness Virtual Retreat on Saturday, March 15th, 2025, from 8:30 AM to 12:15 PM PST. The theme of the retreat is "Brilliance." Living with, or supporting someone living with, cancer can be depleting, especially when it is an uncommon and uniquely challenging disease like neuroendocrine tumor. This retreat we will focus on connecting with our inner light and reflect upon ways to let our true brilliance shine through. Registration Closed Join our Health & Wellness Virtual Retreat on Saturday, March 15th, 2025, from 8:30 AM to 12:15 PM PST. The theme of the retreat is "Brilliance." Living with, or supporting someone living with, cancer can be depleting, especially when it is an uncommon and uniquely challenging disease like neuroendocrine tumor. This retreat we will focus on connecting with our inner light and reflect upon ways to let our true brilliance shine through. We will create a safe, empathetic space to focus on ourselves and what makes us shine, or lights us up from within. Together we can appreciate our unique facets and the brilliance we emanate. This is an interactive wellness event designed for those living with neuroendocrine cancer and/or their loved ones. The retreat will take place on Zoom (a two-way stream), meaning everyone will be able to see and interact with one another during the activities. Retreat sessions include: Chair Yoga with Julie Wolinsky Art Therapy with Angie Madama (Art Therapist) Guided Meditation with Ruth Q. Wolever, PhD, NBC-HWC Reflections, Connections & Sharing facilitated by Lisa Yen, NP, NBC-HWC This special biannual event* is offered at no charge to neuroendocrine cancer patients and caregivers. *Limited spots are available. First come, first served. By registering, you agree to RSVP and provide additional information needed for the art therapy session. Accommodations may be required for those living outside of the US. Please give 72 hours notice if you cannot attend. Register below by March 1st, 2025. MEET THE INSTRUCTORS & FACILITATORS JULIE WOLINSKY Registered Yoga Teacher Julie Wolinsky is an Experienced-Registered Yoga Teacher who has taught a variety of in-person and online yoga formats, including Chair Yoga, Vinyasa Flow Yoga, Yoga with Weights and Cardio, and Yin Yoga, for the past eight years. Passionate about helping others to live their healthiest and happiest lives, Julie has taught yoga to cancer patients, senior citizens, those in wheelchairs, as well as professional athletes and teenagers. She is certified in Reiki Second Degree Natural Healing, and is working toward a certification as a professional coach. With a MBA from Harvard Business School, her professional background is in international development, business strategy and entrepreneurship, and includes living and working in Spain and Latin America. She loves languages and has taught yoga in Spanish and Farsi. Julie developed 5M Yoga, a transformational program for anyone with limited mobility. Through Movement, Meditation, Music, Message & Massage, her students receive a powerful work-out and work-in, along with the tender loving attention they need and deserve. She is inspired to motivate, guide, and learn from her students and believes movement and mindfulness are medicine. ANGIE MADAMA Art Therapist Angie Madama was inspired to form "Reach heART" in March 2020, when the pandemic began, to offer art lessons for kids through Zoom that combine her passion for the arts and mindfulness (she prefers to call it "presentfulness"). It was her intention to provide a safe space to create, physically and emotionally, in addition to supporting an outlet for social engagement, as well as to encourage a sense of connectedness--to think of and support others in our community through our art. Her background stems from a degree in technical Theatre (Costume and Scene Design), the entertainment industry, her love for the arts, yoga, sports (both playing and coaching), and being a parent herself. She has a constant thirst for creativity and learning, particularly in the field of social and emotional development, neuroscience, and the various ways we all can cultivate a practice of BEING present. RUTH Q WOLEVER PhD, NBC-HWC (CST) Guided Meditation Facilitator Ruth Q. Wolever, PhD, NBC-HWC serves as Interim Director of the Osher Center for Integrative Medicine at Vanderbilt and the Director of Vanderbilt Health Coaching . She is an Associate Professor of Physical Medicine & Rehabilitation at Vanderbilt University Medical Center, with secondary appointments in the Department of Psychiatry & Behavioral Sciences and the Vanderbilt University School of Nursing, and an Adjunct Associate Professor at Meharry Medical College. Ruth is the Chief Science Officer for eMindful, Inc. , is a founding member and was the inaugural President of the National Board for Health and Wellness Coaching . A clinical health psychologist and nationally-board certified health and wellness coach (NBC-HWC) , Ruth has over 25 years of experience training and mentoring medical and allied health professionals in behavioral medicine, emotional health and coaching. She also has over 25 years of experience designing, implementing, and evaluating behavior change programs for medical patients and those at risk for chronic disease. Internationally recognized for her expertise on mindfulness and health coaching, Ruth studies mindfulness-based approaches to self-regulation and lifestyle change. Her research has been funded by the National Institutes of Health (NCCAM – now NCCIH, Office of Women’s Health, NHLBI, NIDCD, and NIDDK), the United States Air Force, Centers for Medicare and Medicaid Services, industry, and philanthropy. Ruth is particularly interested in the intersection of mindfulness, behavior change, and inter-professional training. LISA YEN NP, NBC-HWC Director of Programs & Outreach, LACNETS 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. As a medical professional, a caregiver, and a health coach to NET patients, she brings a unique perspective to LACNETS. In her role as Director of Programs & Outreach, she works with the team to plan content for the monthly educational meetings and annual patient educational conference as well as developing programs such as NETCONNECT , the LACNETS Health Coaching Program , the weekly virtual NET support group , and the monthly virtual NET caregiver support group . Lisa also co-created NET VITALS with LACNETS founder Giovanna Joyce Imbesi and City of Hope NET expert Dr. Dan Li. Lisa was the recipient of the 2020 Monica Warner Award. Her passion is to help improve the quality of life for those who have been touched by NET. Lisa earned a bachelor of arts in psychology from Wheaton College in Illinois in 1997, a bachelor of science in nursing from Loyola University of Chicago in 1998, a master of science in nursing from the University of California, Los Angeles School of Nursing’s Acute Care Nurse Practitioner Program in 2003, and a post-graduate certification in Health Coaching from Vanderbilt University in 2018. She is a Nationally Board Certified Health and Wellness Coach (NBC-HWC) , a credential offered in collaboration with the National Board of Medical Examiners. She has been active in community service and has served in medical missions in Kenya and Haiti. Other than her passion for helping people, she also enjoys traveling, snowboarding, and attending theater. THANKS TO OUR SPONSORS

MONTHLY Virtual NET Caregiver Support Group Meetings Monthly on a Saturday (Scroll down for specific dates) 8:00 - 10:00 AM Pacific Register 2025 Dates: Jan 18, 2025 Feb 15, 2025 Mar 22, 2025 Apr 26, 2025 May 31, 2025 Jun 28, 2025 Jul 19, 2025 Aug 23, 2025 Sep 27, 2025 Oct 18, 2025 Nov 22, 2025 Dec 20, 2025 We provide a safe space where NET Caregivers can come together virtually for support, connection and community. We encourage you to express your experiences, thoughts and feelings in this safe space. Unlike our weekly networking group, our Caregiver Support Group does not focus on exchanging information on medical resources. Instead, we focus on the unique experiences and concerns of caregivers and provide emotional support to those affected by NET. *OPEN TO NET CAREGIVERS ONLY. The zoom link is provided in the RSVP confirmation and will also be emailed to you prior to the support meeting. Questions? Need technical support? Email events@LACNETS.org . *Limited spots available. Registration Form - NET Caregiver Group Registration Form Scroll up after you submit the form THANKS TO OUR SPONSORS

Alpha PRRT with Pb-212 VMT << Back Targeted Alpha-Particle Therapy for Advanced SSTR2 Positive Neuroendocrine Tumors (212-Pb-VMT) IDENTIFIER ( ClinicalTrials.gov ) : NCT05636618 DRUG/TREATMENT : Alpha PRRT with 212Pb VMT PHASE : 1 / 2A STATUS : Recruiting SPONSOR : Perspective Therapeutics DESCRIPTION: June 2024: Dr. Aman Chauhan discusses the Alpha PRRT with Pb-212 VMT study. Perspective Therapeutics is sponsoring a phase 1 / 2A prospective, multi-center open-label dose escalation, dose expansion study of [212Pb]VMT01 in up to 52 adult subjects with unresectable or metastatic SSTR2-expressing neuroendocrine tumors (NETs) who have not received prior peptide receptor radionuclide therapy (PRRT). During phase 1, there is a dose escalation period testing up to 4 escalating radioactivity dose cohorts of up to 8 subjects (administered at approximately 8-week intervals) at the assigned cohort radioactivity dose. Phase 1 studies the side effects, safety, and dosimetry. For more information on eligibility criteria, trial locations, study details, etc., go to ClinicalTrials.gov to view this trial here. CONTACT : Markus Puhlmann, MD, MBA at Perspective Therapeutics EMAIL: mpuhlmann@perspectivetherapeutics.com PHONE: (319) 665-2150

High-Grade NEN Resources CLINICAL TRIALS Learn more about key clinical trials focusing on G3 Neuroendocrine Neoplasms (NEN) or High Grade. Visit NEN Clinical Trials Page READ Patient Guide for High-Grade Neuroendocrine Cancers By HealingNET Foundation Download Here Expert Consensus Practice Recommendations of NANETS for the Management of High Grade Gastroenteropancreatic and Gynecologic Neuroendocrine Neoplasms Read Here SCHOLARLY ARTICLES: WELL DIFFERENTIATED HIGH-GRADE NETS Management of Well-Differentiated High-Grade (G3) Neuroendocrine Tumors Treatment Outcomes of Well-Differentiated High-Grade Neuroendocrine Tumors BLOG POST Practical Tips For Patients Preparing For Chemotherapy WATCH "Large Cell Neuroendocrine Carcinoma & Small Cell Lung Cancer" with Aman Chauhan, MD Click here to download the presentation slides from the above video. "High Grade Neuroendocrine Neoplasms & Small Cell Lung Cancer" with Aman Chauhan, MD "Updates in High Grade Neuroendocrine Neoplasms" with Jason Starr, MD "Updates in High Grade Neuroendocrine Cancers" with Aman Chauhan, MD "Focus on Immunotherapy & High-Grade NETs" with Namrata Vijayvergia, MD PATIENT STORY A patient living and thriving with high grade neuroendocrine cancer shares her inspiring story. LISTEN Click here for the podcast, transcript and resources >> Click here for the podcast, transcript and resources >> Listen to the NETWise Podcast here FACEBOOK GROUP Join the High Grade Neuroendocrine Carcinoma FB group here. For more information & and support, contact high grade patient advocate Susan Meckler Sylvan, who supported her late husband with NEC. Susan Meckler Plummer 609-731-322 susan@netsmission.org

Caregiver Resources Virtual NET Caregiver Support Group 1. Virtual NET Caregiver Support Group 2. Free Health Coaching for Caregivers 3. Organizations Offering Resources for Caregivers 4. Organizing Help/Communication 5. Caregiver Self-Care Resource 6. End-of-Life Planning 7. Resources for Children 8. Learning Resources About Caregiving 9. Patient & Caregiver Stories VIRTUAL NET CAREGIVER SUPPORT GROUP Join LACNETS via Zoom every month. We would like to provide a safe space where NET caregivers can virtually come together for support and community. Register Here FREE HEALTH COACHING FOR CAREGIVERS LACNETS offers a series of FREE one-on-one telephonic coaching sessions (8-10 total) to NET caregivers within the Southern California region who are motivated to invest in their own self-care. Sign Up Here ORGANIZATIONS OFFERING RESOURCES FOR CAREGIVERS Cancer Support Community Centers for Disease Control and Prevention Springboard Beyond Cancer Cancer & Careers National Cancer Institute Click here to download the "When Someone You Love Has Advanced Cancer" booklet American Cancer Society Click here to download the Interactive Caregiver Resource Guide Triage Cancer Quick Guide to Caregiving Animated Video: Supporting Caregivers (available in English, Spanish, and closed captioning) Caregiving Resources Page Legal & Financial Navigation Program Additional Resources for Caregivers Share Your Story (NETRF) The Emotions of Living With Neuroendocrine Tumors (NETRF) Assistance and Support for Neuroendocrine Tumors (NETRF) Living Well with Serious Illness (NETRF) Livestrong Caregiver Support Oncolink Caregivers Information & Resources www.HelpForCancerCaregivers.org National Alliance for Caregiving Family Caregiver Alliance NCI: Caring for the Caregiver and Taking Time: Support for People With Cancer Cancer Hope Network American Cancer Society: Caregivers and Family AARP - Senior Care Needs ORGANIZING HELP/COMMUNICATION www.mealtrain.com www.lotsahelpinghands.com www.caringbridge.org https://www.abridge.com/patients CAREGIVER SELF-CARE RESOURCE https://www.caregiver.org/resource/taking-care-you-self-care-family-caregivers/ END-OF-LIFE PLANNING LACNETS Webinar - "Meaningful Advance Care Planning as a Gift to Your Loved Ones" EverPlans - To help prepare/plan for challenging times Practical Considerations when providing Palliative Care to patients with Neuroendocrine Tumors in the context of routine disease management or hospice care EndWell Project Five Wishes Hospice Foundation Guide (useful for more than hospice) Death Over Dinner Coda Alliance - Empowering easier, early, end-of-life conversations Click here for Grief and Loss Resources RESOURCES FOR CHILDREN CancerCare for Kids® provides free, professional support services for parents, children and adolescents affected by cancer, as well as information about helping children understand cancer and additional resources. Learn more here. Help with Hope is a support group to the children whose parent has cancer. If you are a parent with cancer and have a child between the ages of 8 and 17, they can attend an online meditation support group with other kids who understand what they are going through, parents are also invited! Learn more here. Kesem is committed to creating a world where every child who has a parent with a cancer diagnosis or has lost a parent to cancer is never alone. Kesem supports these children through and beyond their parent’s cancer with free, fun-filled creative programs and a lasting community. Learn more here. Lynn Lyons helps families navigate through fear and anxiety. Click here to learn more. LEARNING RESOURCES ABOUT CAREGIVING LACNETS Webinar: " How to Ask For, Accept and Get the Help You Need" with Kim Hamer LACNETS Webinar: “Meaningful Advance Care Planning as a Gift to your Loved One” with Redwing Keyssar, RN Listen Now: NETwise Podcast PATIENT & CAREGIVER STORIES Patient/Caregiver Stories Play Video Share Whole Channel This Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied Now Playing Patient Panel with NET Patients Beth, Burt, Denny & Mary • 2023 NET Cancer Day @NCFCancer 32:58 Play Video Now Playing "Practical Tips For Patients Preparing For Chemotherapy" • Lisa Yen, NP, NBC-HWC 09:44 Play Video Now Playing 13) "A NET Journey" - Ilka & Shane Share Their Story • 2024 Neuroendocrine Tumor Patient Conference 04:50 Play Video Resources for Children Organizing Help/Communication Free Health Coaching for Caregivers Caregiver Self-Care Resource End-of-Life Planning Organizations Offering Resources for Caregivers Learning Resources About Caregiving Patient & Caregiver Stories BLOG POSTS "What Matters Most" - Lisa Yen "What it Means to be a Caregiver" - Beth Voyles

PRRT < Back to Topics PRRT (Peptide Receptor Radionuclide Therapy) Educational Videos Play Video Play Video 01:49:57 "PRRT Nurse's Perspective: What to Expect with PRRT" • Linda Gardner, MSN, RN, VA-BC • Mar 7, 2025 Learn about PRRT from UCLA's Lead PRRT Nurse Linda Gardner. She addresses common questions about what to expect before, during, and after the treatment, as well as concerns about radiation safety. Learn more at https://www.ncf.net/events/mar2025 Play Video Play Video 18:21 "The Nuts & Bolts of PRRT" • Linda Gardner, RN • 2023 NET Cancer Day Symposium @NCFCancer "The Nuts & Bolts of PRRT" • Linda Gardner, RN • 2023 NET Cancer Day Symposium • Santa Monica, CA • @NCFCancer Speaker: Linda Garner, RN UCLA For more information, visit LACNETS.org. Play Video Play Video 20:50 "The Latest in PRRT" • Martin Auerbach, MD • 2023 NET Cancer Day Symposium @NCFCancer "The Latest in PRRT" • Martin Auerbach, MD • 2023 NET Cancer Day Symposium • Santa Monica, CA @NCFCancer Speaker: Martin Auerbach, MD Nuclear Medicine, UCLA For more information, visit LACNETS.org. Play Video Play Video 19:06 "Understanding PRRT" Dr. Erik Mittra • 2024 #LACNETS Patient Conference 9) Understanding PRRT • 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 01:12:47 "PRRT: What We Know, Special Considerations & Clinical Trials" with Dr. Strosberg • Jan 11, 2024 Learn the latest on PRRT with NET expert Dr. Jonathan Strosberg. Dr Strosberg was the principal investigator of the NETTER-1 study which led to the FDA approval of Lutathera and has authored numerous articles on PRRT. He will discuss the latest in PRRT, including special considerations and current clinical trials. Visit LACNETS.org for more information. Play Video Play Video 50:49 Episode 10: PRRT (Part III) ABOUT THIS EPISODE How can patients make decisions about where, when, and what kind of PRRT to receive? How does PRRT in the USA differ from other parts of the world? Why does each institution have different post-PRRT radiation safety precautions? What is the patient experience with traveling after PRRT? Internationally recognized patient advocate and President of NorCal CarciNET Community, Josh Mailman, answers ten common questions about the past, present, and future of PRRT. Josh, whose journey has taken him from PRRT recipient to a seat on the Nuclear Regulatory Commission Advisory Committee, shares from his years of patient advocacy work in nuclear medicine and clarifies some misunderstandings about PRRT. MEET JOSH MAILMAN, MBA Josh Mailman was diagnosed with PNET in 2007. Josh is an internationally recognized advocate for NET patients as well as an advocate for integrative oncology and nuclear medicine and molecular imaging. He is the inaugural chair of the Society of Nuclear Medicine and Molecular Imaging’s (SNMMI) Patient Advocacy Advisory Board, a member of The Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF) Board, acting COO the World Association of Radiopharmaceutical and Molecular Therapy (WARMTH), and president of NorCal CarciNET Community, one of the largest NET patient communities in the United States. In addition, he is a member of National Cancer Institute’s GI Steering Committee after being a member of the NCI Task Force on Neuroendocrine Tumors for seven years. Josh is also a member of the Board of Directors and Executive Committee of the Neuroendocrine Tumor Research Foundation(NETRF). He sits as the single patient member of NETRF's Scientific Advisory Committee which reviews research applications for private funding by this 501c3 foundation. In 2015, Josh was honored with the Warner Advocacy Award, given annually by Novartis Oncology Patient Advocacy and The NET Alliance. The award recognizes an individual for leadership and advocacy for neuroendocrine patients. In the same year, Josh was given the SNMMI’s President’s Award for his work on behalf of patients in the nuclear medicine field. Josh is a former executive board member of the Society for Integrative Oncology (SIO)and was named SIO Patient Advocate of Year in 2010. Josh is a frequent and sought-after speaker for his passionate and highly informed perspective on how patients can effectively participate in the process of working with key stakeholders to improve treatments and advance progress for better quality of life and eventual cures. TOP 10 PRRT QUESTIONS 1. PRRT was available for years outside the USA before it was available here. Why did it take so long before PRRT was available in the US? 2. How does PRRT differ in the USA versus in Europe and other parts of the world? 3. Why is PRRT so much more expensive in the US vs other places in the world? Is it covered by insurance / for lung NETS? 4. Now that Lutathera is more widely available, how does one go about deciding where to get treatment? (Does it matter if I get it locally vs a “NET center?”) / Does it matter where you go to receive your PRRT treatment? (Do I need to be going to a NET center to receive PRRT treatment?) 5. Some people are told they can only receive 4 doses of PRRT in their lifetime. What are your thoughts about this? Do we always need 4 treatments? / How might patients decide when to have repeat PRRT versus having another type of PRRT or another treatment? What might you need to consider as a patient and advocate? 6. What is the patient experience regarding traveling after PRRT? (Do I need to worry about setting off security alarms at airports? What about other security alarms such as at event venues or courthouses?) 7. How might patients go about deciding between various PRRT options (i.e. alpha versus beta)? What might you consider as a patient and as an advocate? 8. Some people are told that PRRT should be saved as a “last resort.” How would you respond? 9. What is your role as a member of the Nuclear Regulatory Commission’s Advisory Committee on the Medical Use of Isotope? 10. Talk a little bit about the release criteria and radiation safety precautions following Lutathera. Why is there a range of what patients are told? How does the process & procedure of radiation safety in the USA differ in the USA vs Europe and other parts of the world? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast10. Play Video Play Video 26:22 Episode 9: PRRT (Part II) ABOUT THIS EPISODE Who is eligible for PRRT? What are the side effects? Should somatostatin analogues be continued? Can PRRT be repeated when there is disease progression? NET expert and Nuclear Medicine Physician Dr. Martin Auerbach of UCLA Health answers 10 common questions about the decision-making process of PRRT. Dr. Auerbach addresses how to manage side effects, carcinoid crisis, labs, and post-PRRT imaging. MEET DR. MARTIN AUERBACH Dr. Auerbach is the Director of Nuclear Medicine at the Westwood and Santa Monica UCLA Hospitals, and Associate Professor in Nuclear Medicine, Division of Pharmacology, at the David Geffen School of Medicine at UCLA. Apart from serving as attending physician in Nuclear Medicine at the UCLA Santa Monica and Westwood Hospital, active research includes clinical studies investigating the role of molecular imaging with PET/CT to gain insights into malignant disease processes, and monitoring of cancer treatment. TOP 10 PRRT QUESTIONS 1. Who is eligible for PRRT? When considering PRRT, is there a minimum or maximum tumor size? What is the effect if a patient receives half the planned dose or a delay in receiving a dose due to low counts? 2. How do you decide on doses of radioactive agents in PRRT? Do they consider the individual’s weight or does everyone get the same dose? 3. What are the side effects of PRRT and how are they managed? 4. Do you continue SSA with PRRT and if so when should one receive it? 5. Can people have carcinoid crisis with PRRT? If so, how is this treated? 6. When or how often are labs done? Which labs and what are you looking for? 7. When do you do imaging? Which imaging to you do? 8. When would you expect to see a response with PRRT and what is the statistics about the shrinkage or response that is expected? 9. For those who have received 4 doses of Luthatera, what happens if/when there is progression, can PRRT be repeated? Can people have more than 4 doses of Lutathera? 10. What is the difference between alpha and beta PRRT? How would you decide between the alpha or beta PRRT? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast9. Play Video Play Video 49:18 Episode 8: PRRT (Part 1) ABOUT THIS EPISODE Curious about PRRT? Wondering what a PRRT day looks like, what side effects you might experience, and what precautions you should take? NET expert and Administrative Nurse Lindy Gardner of UCLA Health answers 10 common questions about the before, during and after of PRRT. Lindy explains how to prepare for your treatment day, what to expect on the day of the treatment, and radiation precautions following PRRT including travel, vaccinations, and fertility and breastfeeding recommendations. MEET LINDY GARDNER, MSN Lindy Gardner, MSN is the lead nurse for the UCLA Peptide Receptor Radionuclide Therapy (PRRT) program. She is one of the authors of the NANETS/SNMMI Procedure Standard for Somatostatin Receptor–Based Peptide Receptor Radionuclide Therapy with 177Lu-DOTATATE. Lindy earned a Bachelors of Science in Nursing from Dundee University Scotland. TOP 10 PRRT QUESTIONS 1. What can I expect on the day of PRRT infusion? What is the day like and what side effects might I experience? 2. What do I need to do to prepare for PRRT? Can I eat and drink normally the day of the treatment? 3. What are the side effects after PRRT and how are they managed? 4. How concerned should I be about the radiation I’m receiving and the long-term effects? 5. What precautions should be taken, especially with small children or pets or others in the house that might be immunocompromised? 6. Does PRRT affect fertility and are there issues with pregnancy or breastfeeding after getting PRRT? 7. How should I travel home? Do I need to sit in the back seat of the car? 8. How soon can one travel after PRRT? In particular, when can one get on a plane? 9. Do I need to sleep in a separate bed and if so, how long? 10. Am I immunocompromised after my PRRT treatment? Do I need to avoid getting vaccines and am I more susceptible to bacteria and viruses? For more resources and a transcript of this episode, visit https://www.lacnets.org/podcast8. 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 01:28:20 LACNETS • "What's New in PRRT" with Dr. Amir Iravani • Apr 2023 Join Dr. Amir Iravani, a Nuclear Medicine Physician and Theranostics Director at Fred Hutchinson Cancer Center, to hear the latest on Peptide Receptor Radionuclide Therapy (PRRT). Better understand the difference between beta and alpha PRRT, current trials and updates on PRRT for Lung NET, adolescents and dosimetry. For more information, visit LACNETS.org. Play Video Play Video 01:33:28 LACNETS Webinar: "NET Imaging: Scans & Reports" with NET Radiologist Dr. Gary Ulaner NET radiologist Dr. Gary Ulaner from Hoag Family Cancer Institute explains different scans used for NET imaging and how to understand your radiology reports. This webinar includes a presentation and live Q&A. Additional NET imaging resources can be found here: lacnets.org/imaging To learn more about LACNETS, visit www.LACNETS.org. 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 01:29:42 LACNETS Webinar - "Future of PRRT" with Dr. Erik Mittra Nuclear Medicine Physician Dr. Erik Mittra provides an update on PRRT. Plus, hear from a NET patient who has received multiple rounds of PRRT treatments. This webinar was recorded on April 19, 2022. Speaker: Erik S. Mittra, MD, PhD Nuclear Medicine Physician Oregon Health & Science University Additional PRRT resources can be found here: https://www.lacnets.org/prrt To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 06:41 NET Patient Story: Re-treatment with PRRT (salvage PRRT) A patient living with neuroendocrine cancer shares his experience undergoing multiple rounds of PRRT treatments. This video was recorded in April 2022. Additional PRRT resources can be found here: https://www.lacnets.org/prrt To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 01:39:40 LACNETS Webinar - "Exciting Advances in NET Management: Cu64 DOTATATE & Alpha PRRT” (disclaimer) Join LACNETS & Dr. Delpassand for his presentation on "Exciting Advances in NET Management: Cu64 DOTATATE & Alpha PRRT.” Recorded on March 16th, 2021. Speaker: Ebrahim S. Delpassand, MD, FACNM, Chairman and Medical Director, Excel Diagnostics and Nuclear Oncology Center To learn more about LACNETS, visit www.LACNETS.org. Audio/Video - www.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 07:35 Patient Story: NET Patient shares his experience with PRRT NET Patient Denny shares his experience with PRRT. April 13th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. Play Video Play Video 01:34:37 LACNETS Webinar: “PRRT: 3 years after its introduction in the US" with Dr. Lisa Bodei Join LACNETS & Dr. Lisa Bodei for her presentation on "PRRT: 3 years after its introduction in the US." Recorded on April 13th, 2021. Speaker: Lisa Bodei, MD, PhD Nuclear Medicine Physician Memorial Sloan Kettering Cancer Center To learn more about LACNETS, visit www.LACNETS.org. Audio/Video - www.TVPlive.com 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. Play Video Play Video 05:54 Patient & Caregiver Story: NET patient & caregiver share about their experience with PRRT (LACNETS) NET patient Shaunie and her daughter/advocate Heather share about their experience with PRRT. June 20, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:02 Patient Story: NET Patient shares her experience with PRRT (LACNETS) NET Patient Kelli Edwards shares her experience with PRRT. April 24, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 05:52 Patient Story: NET Patient shares his experience with PRRT (LACNETS) NET Patient Tom Bajoras shares his experience with PRRT. April 24th, 2020 To learn more about LACNETS, visit www.LACNETS.org. 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 01:40:58 LACNETS Webinar - "Focus on PRRT with NET Experts" Dr. Hope, Dr. Naraev, Lindy Gardner, Josh Mailman LACNETS Webinar - "Focus on PRRT with NET Experts" Tuesday, April 14th Audio/Visuals: TVP Live Speakers: Lindy Gardner, BSN, RN, Lead Nurse, PRRT Program, UCLA Health Thomas Hope, MD, Assistant Professor, Abdominal Imaging and Nuclear Medicine, UCSF Josh Mailman, MBA, President, NorCal CarciNET Community Boris Naraev, MD, PhD, Lead, Neuroendocrine Oncology Program, Banner Health www.LACNETS.org Play Video Play Video 31:14 Nuclear Medicine Imaging & PRRT: Louise Thomson, MD - 2019 LA NET Conf Nuclear Medicine Imaging & PRRT: Louise Thomson, MD Louise E. Thomson, MD Nuclear Medicine, Cedars-Sinai Medical Center 2019 Annual Los Angeles NET Patient Education Conference Saturday, June 8th www.LACNETS.org Play Video Play Video 01:38:39 LACNETS - "Focus on PRRT with the UCLA PRRT Team" (UCLA) LACNETS - "Focus on PRRT with the UCLA PRRT Team" (UCLA) Speakers: Shadfar Bahri, MD, Assistant Clinical Professor, Nuclear Medicine, UCLA Linda Gardner, BSN, RN, VA-BC, Clinical Nurse, Nuclear Medicine, UCLA Maria Regina Gadson, Mgmt Services Officer, Nuclear Medicine, UCLA Location: Ahmanson Translational Theranostics Division at the UCLA Faculty Center Date: Tuesday, April 9th, 2019 For more information, please visit www.LACNETS.org. PRRT Patient and Caregiver Stories Play Video Play Video 05:52 Patient Story: NET Patient shares his experience with PRRT (LACNETS) NET Patient Tom Bajoras shares his experience with PRRT. April 24th, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 07:02 Patient Story: NET Patient shares her experience with PRRT (LACNETS) NET Patient Kelli Edwards shares her experience with PRRT. April 24, 2020 To learn more about LACNETS, visit www.LACNETS.org. Play Video Play Video 05:54 Patient & Caregiver Story: NET patient & caregiver share about their experience with PRRT (LACNETS) NET patient Shaunie and her daughter/advocate Heather share about their experience with PRRT. June 20, 2020 To learn more about LACNETS, visit www.LACNETS.org. 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. Play Video Play Video 07:35 Patient Story: NET Patient shares his experience with PRRT NET Patient Denny shares his experience with PRRT. April 13th, 2021 To learn more about the LACNETS , visit www.LACNETS.org. Play Video Play Video 06:41 NET Patient Story: Re-treatment with PRRT (salvage PRRT) A patient living with neuroendocrine cancer shares his experience undergoing multiple rounds of PRRT treatments. This video was recorded in April 2022. Additional PRRT resources can be found here: https://www.lacnets.org/prrt To learn more about LACNETS, visit www.LACNETS.org. < Back to Topics Next Topic >