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“We are a community. There are many experts and advocates fighting on your behalf. We are all fighting with and for you. YOU are the reason we do all of this. We strive to build connections. And when we come together and link arms, we are stronger TOGETHER. — Lisa Yen, LACNETS Program Director (Quote from the Virtual 2020 Los Angeles NET Patient Education Conference) On Saturday, June 20th, the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) presented the Virtual 2020 Los Angeles NET Patient Education Conference. Our motto this year was “Stronger Together.” Stronger Together: COLLABORATION LACNETS is a NET community comprising of NET patients and their loved ones, NET experts, partners and supporters. We collaborate with local and national NET centers and organizations. We aim to build and strengthen connections among those in the NET community because we recognize we are stronger together. The conference agenda featured: 8 NET experts from 7 different NET centers 5 NET patient stories Resources from various partners Stronger Together: EDUCATION & CONNECTION While the Virtual 2020 Los Angeles NET Patient Education Conference may be over, our mission lives on! We invite you to go deeper with us. There are many opportunities to further your NET education, connect with others, and give back! WATCH OR REWATCH the videos from the conference on our LACNETS YouTube Channel . JOIN an upcoming LACNETS meetings. We feature an exciting lineup of speakers for our monthly webinars. Dr Eric Liu discusses "Sequencing of Neuroendocrine Tumor Treatments" in our July 2020 webinar. CONNECT with us! We meet virtually weekly for peer support and networking on Wednesdays from Noon to 1:30 PM (Pacific Time). NET Caregivers are invited to monthly NET Caregiver Support Group meetings on the last Saturdays of every month from 8-10 AM (PST). These meetings are facilitated by palliative care physician Dr. Chandana Banerjee from City of Hope . (Check out the May 2020 blog “Becoming a Caregiver.” ) Connect with a NET patient or caregiver mentor through our NET CONNECT program . Partner with a health and wellness coach through our LACNETS health coaching program . Learn more about health and wellness coaching in our August 2020 LACNETS webinar "Thriving with NET: How Health & Wellness Coaching Can Help You." (Check out our previous blog on Health Coaching. ) Follow LACNETS on social media for the latest updates on events, programs, news, and research. Follow us on Facebook , Twitter , and Instagram ! TEST yourself! Fill out your own NET VITALS , your NET Communication Tool to better prepare for an upcoming appointment or to keep in your purse or “GO bag” in case of emergency. Take our fun NET quizzes ! STRONGER TOGETHER: PAY IT FORWARD CONTRIBUTE to future meetings, programs, and conferences. ( LACNETS is a 501©(3) nonprofit organization) . If you’ve enjoyed and benefited from the LACNETS Annual conference, monthly meetings, programs, educational blogs, or quizzes, please consider making a tax-deductible donation . Your generous support makes it possible to hear from NET experts, livestream and videotape presentations, and increase our reach to those whose lives have been touched by NET. We are deeply grateful for your contribution. The mix of testimonials from patients and the clinical presentations was outstanding. I learned something from just about every presentation! — NET Patient Watch now: Live Q&A with 10 NET Experts Watch: Patient & Caregiver Stories "Finding a NET Expert" ( 5:44 - 22:25 ), Cindy Lovelace, Executive Director, Healing NET Foundation "Patient Story" ( 0:00 - 7:03 ), Eric, NET Patient "Patient Story" ( 0:00 - 6:06 ) , Mary, NET Patient; "Patient & Caregiver Story" ( 43:31 - 50:52 ), Shaunie, NET Patient; Heather, NET Caregiver "Patient Story" ( 0:00 - 6:30 ), Brent, NET Patient Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Neuroendocrine cancer (neuroendocrine tumor or NET) and COVID-19 share some similarities. They’re both equalizers. They don’t discriminate based on socioeconomic class, age, gender, religion, or politics. They also teach us similar lessons. We are learning to pace ourselves for a marathon rather than a sprint. We are learning to be flexible…to make friends with change as we live with uncertainty. And we are learning to find a new normal, one in which we become more attentive and proactive about our health and wellness. LACNETS understands that NET doesn’t slow down for the coronavirus. While we try to stay safe with physical distancing, we must continue to be informed about our disease. To those affected by NET, knowledge is empowering. It helps regain control and make better decisions for ourselves. Educated patients tend to be happier patients as they have better expectations and feel more comfortable navigating this journey. — Dr. Tom Hope As always, LACNETS remains committed to offering education and support to the NET community. LACNETS wants to help you better navigate your journey. Because public policies prevent us from gathering, LACNETS is bringing the 2020 Annual Los Angeles Neuroendocrine Tumor Patient Education Conference to the safety and comfort of your home. LACNETS is excited to present an incredible panel of NET experts and patients. Join LACNETS for the first virtual NET Patient Education Conference. LEARN from NET experts. Build your knowledge and understand more about the disease. Learn about current therapies from the medical community. Get your questions answered. LEARN from NET patients. Hear stories from other NET patients who share about their experiences and lessons learned. Be EMPOWERED to be a better advocate in the NET journey. UNDERSTAND how to cope with the emotional challenges of living with NET. DISCOVER ways to increase public awareness of the disease. No traffic. No commute. No wait. No lines. No need to wear a mask. Check out the past LACNETS Conference Videos on our LACNETS YouTube Channel . Why attend a NET Patient Education Conference? Hear from NET patients & caregivers below who have attended these important conferences in the past. WATCH NOW: Virtual 2020 Annual Los Angeles Neuroendocrine Tumor Patient Education Conference. 4+ hours of NET-focused content including presentations on PRRT, Finding a NET Expert, Surgery, Systemic Therapy, Imaging, Liver-Directed Therapy, Symptom Management, and a 45-minute Q&A with 10 NET experts around the country! Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

“Let us change the face of dying in our culture from one of fear and anxiety to one of acceptance and compassion. Inevitable as death is for all beings, let us work to create experiences that are positive, potent and transformational. — Judith “Redwing” Keyssar, RN, from Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying Many of us spend a lifetime avoiding certain difficult conversation topics. Death and dying may be one of them. Sadly, over the past few months, shocking losses and changes have raised these issues to the forefront of our minds. So, let’s talk about the elephant in the room. Before the coronavirus pandemic, we released a blog article #legendsliveforever which discussed how the recent losses of heroes and loved ones such as basketball legend Kobe Bryant and LACNETS founder and jazz musician Giovanna Joyce Imbesi caused us to pause and evaluate what matters most. This important question - What matters most? – may influence how we choose to live. It also guides how we might choose to live our final days. In October 2019, Giovanna accepted that her health was declining and moved to Marin County to be surrounded by her found family, music, spiritual community, and nature. Soon after her move, she attended a workshop by UCSF Palliative Care RN, Redwing Keyssar entitled, “What Matters Most.” This advanced care planning workshop deeply impacted Giovanna. She began considering practical matters including gathering resources by building a care team, and creating clear advance directives to guide her loved ones in her care. Giovanna had hoped to share her insights and lessons learned with the LACNETS community, but unfortunately, she was unable to do so. Perhaps she has led the way by modeling—she was able to pass away in the way that she had hoped – peacefully at her Marin home, surrounded by loved ones. Our community was still reeling from these losses when the coronavirus pandemic hit our country and the world. Our lives were abruptly turned upside down. While hunkering down at home over the past weeks, we’ve read frightening statistics and stories in the news. Not surprisingly, headlines have reported that doctors and other healthcare workers have been updating their own wills and advance directives as they prepared for the risks of fighting on the front lines. The doctors have gone one step further by urging the public to seriously consider creating meaningful advance directives . What is an Advance Directive? An advance directives is a legal document in which individuals express their wishes regarding the types of medical treatment they may or may not want if they were in a situation where they could not speak for themselves. Creating the document requires advance care planning to discover the types of decisions that need to be made in times of medical crisis. Advance care planning also involves naming specific decision makers and discussing your wishes with them and your loved ones so that they are prepared to advocate and speak on your behalf in the event that you are unable to do so. Many people shy away from discussing end-of-life issues. Perhaps this avoidance is motivated by fears and anxieties. Perhaps there hasn’t been an opportunity to discuss these topics freely in a safe space. Or perhaps you’ve been uncertain about how or where to begin the conversation. Talking about these issues doesn’t have to be scary or awkward. Simply starting the conversation might help release some of the fear and anxiety. Talking about it can lead to self-acceptance and a deeper connection with loved ones. Taking steps in advanced care planning may even feel empowering. Also, it feels less overwhelming when the discussion happens before a crisis hits so your loved ones are prepared to carry out your wishes. Being prepared is one of the greatest gifts you can give your family and friends. Start by asking the critical questions: What IS most important to you? What do you value? Everyone has different priorities. Some might want to be surrounded by loved ones. Others desire not to be a burden to their family. Getting one’s “affairs in order” is another common priority. For your loved ones to best care for you during a critical time, they need to understand what matters most to you. Here are some ways to begin this conversation: Play the GO WISH card game with your loved ones to help clarify what is most important and how you can best comfort each other when you need it most. Read blog article “Last Acts of Kindness: Care and Compassion at the End of Life” by Redwing Keyssar. Read the book, "Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying by Redwing Keyssar. Attend a “What Matters Most” advance care planning workshop , offered monthly by the MERI Center for Education in Palliative Care at UCSF/Mt Zion . Check out PREPARE for your Care to download advance directives (available in Spanish), watch videos, and prepare a COVID-19 medical plan and hospital go bag . Click here to download California’s Advance Directive. Join Redwing’s “Food for Thought” Poetry Cafe sessions . These are free one-hour drop in sessions each week to express feelings and creativity during these challenging times. We want to create opportunities for those in our community to begin these challenging conversations. To that end, we invited Redwing Keyssar to be the guest speaker at our next May 2020 webinar. Watch now: “What Matters Most? Meaningful Advance Care Planning as a Gift to Your Loved Ones” with special guest, UCSF Palliative Care RN and a friend of Giovanna, Redwing Keyssar. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Prayer for a Pandemic By Cameron Bellm May we who are merely inconvenienced Remember those whose lives are at stake. May we who have no risk factors Remember those most vulnerable. May we who have the luxury of working from home Remember those who must choose between preserving their health or making their rent. May we who have the flexibility to care for our children when their schools close Remember those who have no options. May we who have to cancel our trips Remember those that have no safe place to go. May we who are losing our margin money in the tumult of the economic market Remember those who have no margin at all. May we who settle in for a quarantine at home Remember those who have no home. As fear grips our country, let us choose love. During this time when we cannot physically wrap our arms around each other, Let us yet find ways to be the loving embrace of God to our neighbors. Amen. Where We Are Today… In the past few weeks, our lives have been turned upside down as the coronavirus outbreak has evolved. At first, the threat seemed far away, separated by an ocean. Today, we are united nationally and globally in our fight against the coronavirus. We initially watched from afar as our country, state, and city declared a state of emergency. We noted the domino effect of cancellations of conferences, events, festivals, and mass gatherings such as South by Southwest, Coachella, and the Boston Marathon. Sporting events and live audience events followed soon after. Broadway went dark, as did the Las Vegas strip. Theme parks, restaurants, bars, movie theaters, and retail stores closed. Travel has been disrupted. Workplaces began telecommunicating. Meetings and medical visits switched to teleconferencing. Universities, colleges, and K-12 schools transitioned to online instruction. Visitation to retirement communities, nursing homes, and hospitals has been limited or altogether banned. We were initially told not to gather in groups of more than 10. Soon after, we began sheltering in place. Learning New Terminology… Social distancing refers to the actions taken to slow down the spread of the virus. It includes the community actions described above. For an individual, it also means staying at least 6 feet from another person to avoid getting infected or infecting someone else. Flattening the curve means to slow the spread of COVID-19. Because there is currently no cure, staying home is the best strategy we have to help save lives. We can keep too many people from getting sick at the same time which would overwhelm the healthcare system. By taking action to curb the spread, we can help keep the daily number of disease cases to a manageable level for the healthcare system. The Washington Post’s article shows the difference precautionary measures can make on the curve through a series of simulations . Image from the CDC With all these drastic measures, it’s becoming clear that this coronavirus pandemic is a serious matter. It is NOT just the flu. While many early cases were linked to travel to an affected area or exposure to a known case of coronavirus, it is now clear that there is community spread—meaning the virus is spreading from an unknown source. While there are people at higher risk for more serious complications, we are all called to take action since individuals can spread the virus before showing any symptoms. The Coronavirus poses a serious challenge to our personal and community health. It affects us all. The NET Community is Resilient! We, the NET community, are familiar with living with uncertainty. That’s what the NET journey is all about. We’ve had our lives disrupted. We’ve learned to catch curveballs. We’ve learned to find a new normal. Through our journey with NET, we’ve developed inner strength and resources. We can and will adapt to this too! We ARE resilient! What Should We Do? 1. STAY INFORMED. Here are reliable sources for the latest accurate information about the coronavirus: World Health Organization (WHO) Centers for Disease Control and Prevention (CDC) California Department of Public Health The Los Angeles County Department of Public Health LA County residents can also call 2-1-1. City of Hope Cedars-Sinai UCLA Health Cancer & COVID-19: American Cancer Society Cancer Treatment Centers of America's Cancer & COVID-19 Podcast National Cancer Institute NET & COVID-19: CCF Facebook Live Series on COVID-19 Healing NET COVID-19 and NET Topics NANETS COVID-19 Webinar and Resources Read the COVID-19 information for NET patients and caregivers . NETRF COVID-19 Resources NorCal CarciNET President Josh Mailman, Stanford NET specialist Dr. Pamela Kunz and Stanford Infectious Disease specialist Dr. Janice Brown prepared an ongoing FAQs for the NET community. Watch a video interview with Dr. Pamela Kunz here . Read COVID-19 & NETS FAQs here . Dr. Mark Lewis, a NET Oncologist and patient, shares his recommendations for cancer patients in a video interview . Consider switching your monthly injection to home administration: Somatuline Depot (Lanreotide) Read about the IpsenCares Nurse Home Health Administration Program . Enroll on the IpsenCares website . Sandostatin LAR Depot (octreotide acetate) To read more or enroll in the home administration program, click here . 2. PRACTICE SELF-CARE. Attend to your body, mind, soul, and spirit to stay healthy! Get adequate sleep and rest. Eat balanced meals. Stay physically active. Go outdoors and get some sunlight daily, if possible. Breathe. Take a mindful moment, meditate, or pray. eMindful opened its entire platform of live guided mindfulness practices for 30 days to help us during this season - at no cost. UCLA MARC offers free guided meditations and virtual drop-in meditations . Laugh . Practice gratitude . Instead of focusing on what you can’t do, think of things you can do! Take this as an opportunity to do things you’ve been meaning to do! Take a break. Limit your time watching the news and checking social media. Find the space to process how you’re feeling. Pace yourself. This is a marathon, not a sprint. (Read our Marathon Training blog Part 1 , Part 2 , and Part 3 .) Wash your hands often with soap and water for 20 seconds. Clean and disinfect “high-touch” surfaces like phones, tablets, and doorknobs daily. The CDC recommends at least 60 percent alcohol. 3. SOCIAL DISTANCING DOES NOT MEAN ISOLATION. Here are some suggestions for preventing isolation and loneliness during this season of social distancing: Name it and face it head on. Find a buddy and call each other regularly. Video-conference with friends or family using apps like FaceTime , Skype , WhatsApp , or Zoom . Check-in with your neighbors. Gardening. Take the opportunity to plant your own vegetables. Read a book that you’ve been wanting to read. Journal. Write a poem or short story. Sing or play an instrument. Play a board game with those in your household or virtually with friends or family . Work on a puzzle. Organize and/or declutter your home. Learn a new skill. Livestream a church service. Stream an opera (i.e. Metropolitan Opera or Los Angeles Opera ), a Broadway show . Explore a museum , gallery , National Park , or zoo or aquarium from the comfort of your home. Take a free virtual cooking class . Dance along with an online or live-streamed dance instructor. Find a way to help someone else in need while maintaining social distancing. Talk to a professional. Nonprofits such as Cancer Support Community and Cancer Care offer free counseling and have moved to virtual counseling sessions. Connect with a LACNETS NET Connect mentor. Invest in your self-care by engaging with a LACNETS health coach . Catch up on videos of past meetings on our LACNETS YouTube Channel . Test your NET knowledge with our NET Quizzes . Organize your medical information by filling out your NET Vitals . Reread past LACNETS blog articles. Network through our social media channels — Facebook , Twitter and Instagram . Let’s flatten the curve, reduce stress, and redefine community together! Join us every Wednesday LACNETS provides a safe space where we can virtually come together for support and community. Join the next support group. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

In the last blog, “Be Inspired,” I wrote that the word “inspire” comes from the Latin word “inspirare,” which means “to breathe or blow into.” Since then, I’ve been thinking of what it means to breathe. What is a breath? It’s so simple. In. Out. In through the nostrils. Out through the mouth. It’s routine. It’s mundane. It’s steady. It’s basic. The breath is nourishing. It brings in oxygen. It gives life. There are times we are told to take a breath. Sometimes we are told to hold the breath. And sometimes we are told to exhale. MRI scans, injections, heavy lifting, and yoga. What does holding your breath mean to you? If you’re anything like me, there are times I catch myself holding my breath. It happens subconsciously. Maybe it’s because I think that somehow, if I hold my breath, whatever is causing me distress will go away. Perhaps you’re anxious about an upcoming scan or treatment. Maybe you’re at a crossroads and wrestling with a decision. Or perhaps you’re struggling with the uncertainty of living with NET. If you’re breathing, there’s more right with you than wrong.” — Jon Kabat-Zinn Breathe. In. Out. In through the nostrils. Out through the mouth. Allow the breath to come into your body and to leave your body. Naturally. Not trying to force it in any way. Not trying to change it. Simply being aware. Simply observing. Becoming totally present in each moment with each breath. What do you want to breathe out today? What do you want to breathe in today? The breath is an anchor. In fact, it is the anchor for becoming more mindful. Mindfulness is a practice to calm and focus the mind. It isn’t a way of forcing calmness or stopping the train of thoughts. It’s a way to pause in the midst of the storm and simply breathe. I choose to breathe out anxiety and stress. I choose to breathe in hope, gratitude, and love. I choose to breathe. To live. And to live with intention and gratefulness. Breathe. And live. If you want to learn more about mindfulness, here are some resources: What is Mindfulness: Getting started with mindfulness Free guided meditations: Online Podcast Insight Timer App Headspace App Free in-person meditation & yoga classes: UCLA Tower Cancer Research Foundation Cancer Support Community LA More reading: How Cancer Changes Hope 31 Gratitude Exercises Gratefulness Click here to read the blog post, "Be Inspired." Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Dear LACNETS Family, Given the recent concerns surrounding the Coronavirus (COVID-19), we want to assure you that your health and safety are our utmost concern. You may have heard that several mass gatherings have been canceled including ENETS , the European NET Society medical conference that Dr. Dan Li and Lisa Yen were planning to attend to present NETVITALS research. You may have also heard that the 2020 Bay Area Neuroendocrine Patient Conference has been canceled. Today, we are sad to announce that the upcoming monthly meeting this Saturday, March 7th at City of Hope has been canceled. City of Hope has decided, out of extreme precautions, to limit exposure of all staff and personnel. This is by far more than what is traditionally recommended and done purely out of caution. To be very clear, there are NO cases of coronavirus at any of our Los Angeles NET Centers. We have decided not to take any unnecessary health risks with respect to our participants, speakers, and the patients of all healthcare workers. The goal is to ensure that patient care continues to flow without interruption. We hope that the situation continues to improve moving forward so that we can return to our regular meeting schedule as quickly as possible. In the meantime, we encourage you to watch videos of past meetings on our LACNETS YouTube Channel and network via our social media channels — Facebook , Twitter and Instagram . How LACNETS is responding to the Coronavirus: We will continually check with the CDC and follow current CDC recommendations . We will keep you update you with any changes in our meeting schedule. As always, we encourage people to stay home and join us via livestream if anyone has signs of illness including fever, cough, cold or flu symptoms. We will have hand sanitizer, anti-bacterial wipes, and tissues available at meetings. We do not encourage the use or purchase of masks, as those must be reserved for healthcare workers. We encourage patients to have a 30-day supply of medications on hand. We choose to avoid panicking and isolating. We encourage everyone to be aware that fear about a disease can lead to racism and stigma when people associate the disease with a population or nationality, even though there is no evidence that the population is specifically at risk for the disease. We encourage practicing necessary precautions and trying to remain calm rather than resort to negative thoughts or actions. (Read our previous blogpost “ Breathe. ”) We encourage you to get your news from reliable sources of information such as the CDC and the WHO . We encourage you to familiarize yourself with the current CDC recommendations . At this time, there are no additional recommendations specific for NET patients or cancer patients in general outside of the standard recommendations for coronavirus. Sometime next week, NorCal Carcinet will livestream a Q&A on Twitter, Facebook, and YouTube. They will also release a NET FAQs based on questions. More information can be found here . How can I help protect myself? You can help protect yourself from respiratory illnesses with these everyday preventive actions: Avoid close contact with people who are sick. (Keep a distance of approximately 6 feet.) Avoid touching your eyes, nose, and mouth with unwashed hands. Wash your hands often with soap and water for at least 20 seconds (about as long as it takes to sing the “Happy Birthday” song twice). Get in the practice of washing your hands immediately after walking into the door. Use an alcohol-based hand sanitizer that contains at least 60% alcohol if soap and water are not available to wash your hands. Substitute hand-waves and elbow bumps for hugs and handshakes. If you are sick, to keep from spreading respiratory illness to others, you should: Stay home. Cover your cough or sneeze with a tissue, then throw the tissue in the trash. If you don’t have a tissue on hand, cough or sneeze into your elbow. Clean and disinfect frequently touched objects and surfaces such as your phone, doorknob, and steering wheel. Sincerely, LACNETS Staff and Board Dr. Dan Li , Co-Director of the NET Program at City of Hope

"Watts Kobe Bryant Memorial Mural" • PeQue “Heroes come and heroes go but legends are forever. — Kobe Bryant (1978-2020) On January 26, 2020, news of the unexpected passing of basketball legend Kobe Bryant and his 13-year-old daughter Gianna shocked the world. Fans flocked to Staples Center and erected a public memorial to honor the Black Mamba and Mambacita. Tears and tributes flowed across social media and at the recent public memorial on February 24th. People recount stories of where they were and what they were doing when they heard the tragic news of Kobe’s death. This storytelling reminds one of how others share their memories of where they were when they received the news that John F. Kennedy was assassinated. Or perhaps here they were when they learned that planes struck the World Trade Center on 9/11. These are moments that leave indelible marks on our memories and our hearts. It’s the shock of something happening that we never thought possible that creates an urge to share how it impacted us. The passing of Kobe Bryant was one of those moments. To those in either the neuroendocrine cancer (neuroendocrine tumor or NET) community or music community, the passing of LACNETS founder and jazz musician Giovanna Joyce Imbesi was equally shocking. To the world, Kobe was invincible. To us, Giovanna was invincible. The loss of our heroes reminds us that we are mere mortals. Life is short. It makes us pause and evaluate what really matters. We hug our loved ones a little tighter. We consider our plans. How am I investing my life? What is the legacy that I want to leave? Consider the legacy of Giovanna Joyce Imbesi . Giovanna lived richly and fully with neuroendocrine cancer for 14 years. Following her diagnosis, she pursued an MBA with the sole purpose of founding and building a nonprofit to build a community of education and support for NET patients and their loved ones. Giovanna was an extraordinary visionary. Through LACNETS, we extend awareness, education, and support to the NET community locally, nationally, and even internationally. Giovanna inspired many to dream and reach for the stars. Through her encouragement and support, many learned to thrive despite living with NET. Giovanna was a light. She modeled inspiration and hope to all who met her. Giovanna is more than a hero; she is a legend. And Giovanna will live on through LACNETS . The LACNETS board, staff, community, and partners are committed to carrying on the legacy that Giovanna created that she herself stated she was most proud of – LACNETS. (Click here to read the recent message to the LACNETS community from the LACNETS board. ) We invite you to join us to carry on her torch! Here are ways you can help carry on Giovanna’s legacy: TALK about neuroendocrine cancer, LACNETS, and the tools Giovanna created such as NET VITALS . Tell your community of family, friends, colleagues, and medical professionals about LACNETS. We once asked Giovanna how far she wanted to extend the outreach and impact of LACNETS. She responded, “I want to reach as many people as we can.” You can help us spread awareness! Bring NET materials such as the HealingNET Primer and LACNETS rack cards to your medical professional. [Click here to email us and request rack cards] SHARE your feedback. Fill out the post-meeting questionnaires after any meeting you attend. Email us your stories about how LACNETS has impacted your life. Your testimonials can help us fund our programs! CONNECT at our upcoming meetings, Annual Conference, and private Facebook community group . FOLLOW and LIKE the LACNETS Facebook page where all of our meetings can be livestreamed. SUBSCRIBE to and LIKE the LACNETS YouTube channel where you can find videos of all our past meetings. READ our previous blog post "Spreading NET Awareness - How You Can Make A Difference .” DONATE to LACNETS . Contributions of any size will help us sustain the programs Giovanna launched. IN LIEU OF FLOWERS OR GIFTS, PLEASE SEND A DONATION TO LACNETS TO CARRY ON GIOVANNA’S LEGACY. LACNETS is a 501(c)(3) non-profit corporation, Tax ID #20-0062062. All donations are tax-deductible as allowed by law. PLEASE FEEL FREE TO LEAVE A TRIBUTE TO GIOVANNA IN THE COMMENTS SECTION BELOW. Note: The use of the "Black Mamba" image is only authorized for the blog article LACNETS ( LACNETS Blog — LACNETS ), a non profit organization involving Kobe Bryant. No other recreation or distribution is allowed without the expressed written permission from Patrick Q. Brown, Sr. or LIQUID Arts and Productions, LLC. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Dear LACNETS community, As many of you know, our beloved friend and leader, Giovanna Imbesi , passed away in November, 2019. There are no words to express the depth and impact of her loss. Giovanna wasn’t only the Founder and Executive Director of LACNETS, she was the heart and soul of the Los Angeles NET patient/family community. As a Board, we are honored and committed to continuing her wonderful legacy and ensuring that LACNETS continues to grow and strengthen. We want to share several initial steps the Board has taken to continue to carry out our mission: Kavya Velagapudi has been appointed as Interim Administrator. Kavya worked closely with Giovanna to secure funding, and acted as the Interim Executive Director between October 2018 – June 2019. An Advisory Committee will provide input and guidance through the transition period. Committee members include: Donna Gavin, Kavya Velagapudi, Ron Hollander, Josh Mailman, Janis Minton and Mary Donlevy. A Program Advisory Committee will be formed to provide input and recommendations for the 2020 LACNETS Programs. Lisa Yen continues as Program Director, taking the lead on the 2020 LACNETS programs and working with the Program Advisory Committee. Lindsey Jeu De Vine continues in her role as Director of Communications providing the essential website, information, social media and meeting planning that supports all LACNETS programs. We are grateful for the strong team Giovanna brought together and look forward to offering programs that provide vital support and education for the LACNETS community. Please join us at the February 11th patient seminar where you will also have a chance to meet members of the Advisory Committee and the Board. Please feel free to contact us at info@lacnets.org if you have any questions.

The word “inspire” comes from the Latin word “inspirare,” which means “to breathe or blow into.” For me, an image comes to mind of blowing on a small flame to get a fire going. What is that fire that I am trying to breathe or blow into? It is the flame of hope. In the darkness and storms, hope is the fire that brings light, warmth, and comfort. Here are some things that may help fuel your flame of hope... Be Inspired by Patient and Caregiver Stories: Know that you are not alone… Five NET patients shared their experiences at the LACNETS 2018 Annual Conference on a range of topics including conversations with caregivers, loved ones & children, the impact of NET cancer, emotional support, how to answer the question, “How are you?” over the years, making plans with uncertainty and priorities, and offering hope: At the 2017 Annual Los Angeles NET Patient Education Conference, the patient survivorship panel featured stories of courage and hope: Both patient and caregiver shared about their journey with NET together in April 2017: Watch this story of Mark who was diagnosed with lung neuroendocrine cancer when he was only 11 years old. Here's how life changed for this husband and dad who is now in his thirties. Watch more inspiring videos from Carcinoid Cancer Foundation’s 50th anniversary series. Read “A Blessing in Disguise” (NETRF) Read “A Path to Self-Discover & Growth” (NETRF) Read “What Do I Know for Sure about my Survivorship?” (NETRF) Read “Caregivers Perspective in the Art of Giving Yourself Grace” (Healing NET Foundation) Read " National Park Run for Anna Rose and NET Cancer Awareness " (Healing NET Foundation) Advanced Accelerator Applications (AAA) , the company that commercially manufactures NETSPOT® (aka Gallium68 DOTATATE PET scan) and Lutathera® (aka Lu177 DOTATATE, peptide receptor radionuclide therapy or PRRT), released a booklet featuring five NET patient who share their stories and lessons learned along the way: “ A Journey of Hope: Toward a Brighter Future in Neuroendocrine Treatment. ” Galaxies of Hope is an app by Novartis that engages users through the art of visual storytelling, sharing the actual words and voices of patients, caregivers, and physicians who are part of the NET cancer community. (Click here for android; click here for google play.) Be Inspired to Laugh As former Senator Alan Simpson says, "Humor is the universal solvent against the abrasive elements of life." Laugh with NET patient and comedian Steve Mazan. Be Inspired by Music Music is medicine. Listen to these inspirational music compositions by NET patients in our community. ​ Be Inspired About How to Live Well With Cancer Dr. Steven Pantilat, a palliative medicine physician at University of California, San Francisco, shared insights about living well with cancer at the 2018 NorCal CarciNET conference. His inspirational talk, sponsored by NETRF, can be viewed here . Be The Inspiration: Spread the inspiration to others by making a donation to LACNETS. Your contribution helps us provide and expand our community of support and education both locally and internationally for patients with neuroendocrine cancer. THANKS TO OUR SPONSORS Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

We recently shared the sad news of the passing of our founder, Executive Director, and dear friend, Giovanna Joyce Imbesi . It had been a challenging year for Giovanna’s physical health and she moved to Marin County this fall with hopes of enjoying many months of music, nature, and friends. Sadly, her physical condition unexpectedly and rapidly declined. Giovanna passed away peacefully in her home in Marin surrounded by an intimate circle of loved ones including our very own Lisa Yen and NorCal Carcinet founder and president Josh Mailman along with Giovanna’s sister, Donna Gavin , and a handful of longtime friends. Giovanna also felt incredibly loved and supported by the countless family and friends who were present with her in spirit. Although we miss her dearly, Giovanna expressed her desire that we focus on how she lived richly and fully for 14 years with neuroendocrine cancer . She felt that her greatest legacy was founding and building LACNETS , a non-profit dedicated to providing education, support, and advocacy for those whose lives have been touched by neuroendocrine cancer. Giovanna was especially proud of NET VITALS , a tool we created to improve communication between patients and physicians. Her hope was to help as many people as possible learn to thrive while living with neuroendocrine cancer. Giovanna built more than just a community; she created a family. Her wish was for us to continue celebrating life and connectedness. We welcome you to lean on each other for support by joining us at one of our LACNETS meetings. Our upcoming December 10th meeting will feature a presentation by Chaplain Michael Eselun and will include a time for remembrance of Giovanna. For those unable to attend meetings in person, they are live-streamed on the LACNETS Facebook Page . Past meetings can be viewed on the LACNETS YouTube channel . There are tentative plans for a celebration of Giovanna’s life in the Bay area in January 2020 and Los Angeles in February 2020. More details will follow. You may also leave a tribute to Giovanna in the comments section below. In lieu of flowers or gifts, please send a donation to LACNETS to carry on Giovanna’s legacy. LACNETS is a 501(c)(3) non-profit corporation, Tax ID #20-0062062. All donations are tax-deductible as allowed by law. Remembering Giovanna Joyce Imbesi: "Music Heals" featuring Giovanna’s story, was created in celebration of Carcinoid Cancer Foundation’s 50th anniversary . As a consummate jazz pianist, Giovanna drew from a deep connection to soul and spirit. Her music will continue to heal many. "Give Me Peace," featuring Lettrice Lawrence, was composed and produced by Giovanna. This song honors those who have passed and celebrates those who are enjoying another year of life. The Cedars-Sinai Patient Leadership Award was awarded to Giovanna at the 2019 Annual Los Angeles NET Patient Education Conference on June 8, 2019. A slideshow featuring Giovanna’s song “Hush” was created by NET patient David Coppedge. “Hush” is a song from her album “Short Stories” , piano music for healing, meditation, and relaxation. In the recent LACNETS blog article “Finding Joy: Making Friends with Change” Giovanna shared her personal journey of embracing change and finding joy. Coping & Bereavement support and resources: LACNETS Grief and Loss Resources Surviving the holidays with cancer, LACNETS Coping with loss during the holidays , NETRF Cedars-Sinai’s spiritual care services City of Hope’s grief and bereavement support: 626-218-2273 UCLA’s bereavement support resources WeSpark cancer support center in Sherman Oaks lists many local cancer support, caregiver support, and grief support. Cancer Support Community provides free individual counseling for those living with cancer. They also have support groups for bereavement and for caregivers. During her last few weeks, Giovanna read this book and shared its contents with her friends and family, “Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying .” The author Judith Redwing Keyssar was a personal friend. Please feel free to leave a tribute to Giovanna in the comments section below.

I am grateful for what I am and have. My thanksgiving is perpetual. It is surprising how contented one can be with nothing definite - only a sense of existence. — Henry David Thoreau Gratitude. Sometimes it’s easy to access when things are good. Sometimes more difficult as a cancer patient managing pain, anxiety and symptoms. A gratitude practice can be helpful in many ways, even learning to appreciate the difficult times. Whatever the circumstances, it may work to start small with some deep breaths. Sitting quietly in a comfortable position, focus on the breath, each inhale and exhale, all the things in the body functioning well and automatically. A few deep breaths serve to calm the nervous system. Many of us experience general disruption of everyday life. Suddenly, the basics mattered so much and were so obvious – hot water, electricity, clear air to breathe, phones that work, and the ability to communicate. For patients, this meant concerns about keeping medications cold and challenges for those with medical needs requiring electricity. When the power came back on, each of these basic needs seemed like such a luxury, yet they’re taken for granted most of the time. It was easy to have gratitude for the simplicity of having the electricity back! In these weeks approaching Thanksgiving, gratitude is something often forgotten in the hustle and bustle of planning family gatherings, travel, and cooking the Thanksgiving feast. It is a time to appreciate our family, friends who are near and dear, and even random acts of kindness from a stranger. (Check out our Surviving the Holidays blogpost .) As neuroendocrine cancer patients, let’s acknowledge the thousands of neuroendocrine tumor physicians, researchers and healthcare providers who work on our behalf every day. They work to find a cure and treat our disease to find more treatments that can make living with NET more manageable. Elyse Gellerman, Dr. Dan Li & Lisa Yen We just celebrated NET Cancer Awareness Day on November 10th with a special LACNETS event at City of Hope . For this global day of awareness, we were fortunate to have as guest presenter, Elyse Gellerman of the NET Research Foundation sharing the latest research grants and projects. NET patients and caregivers from all over the Southern California region came together to be in community, learn and support each other. Sometimes patients can be one of the strongest resources for support and we all share this gratitude for having our special community of support. Thanksgiving is a time for giving thanks for what we have, finding a place of gratitude even for the things we no longer have and being able to give to those less fortunate. Enjoy your Thanksgiving gathering! And remember that large meals are not generally recommended for NET patients. (Click here to watch a NET nutrition presentation by dietician Meghan Laszlo from October 8, 2019.) And finally, back to the breath , inhale, exhale, inhale, exhale. Give thanks. Written by Giovanna Joyce Imbesi LACNETS Founder & Patient Advocate

Rare Disease Day is recognized every year on the last day of February to raise awareness of rare diseases. While having a rare disease might not feel like a cause for celebration , it is an occasion for recognition ! What is a Rare Disease? A rare disease is a disease that affects a small percent of the population. In the United States, a rare disease is defined as one that affects less than 1 in 2,000 people at any given time. Patients with rare diseases report certain common experiences. A 2014 large scale survey of NET patients identifies NET-specific needs and challenges: Delayed diagnosis ( 34% report >5 years for proper diagnosis with NET ) Health care providers have limited knowledge of their disease Barriers to accurate information and education about the disease and access to NET specialists Limited treatment options Decreased quality of life Increased financial costs related to traveling to see specialists and for medical care and treatment Impacts the emotional health of the patient and their family/friends as well as the relationships with family/friends Difficulty establishing trust with providers due to above-cited issues How Rare is NET? NET affects 6.98 in every 100,000 people . Midgut and pancreatic (also known as in gastroenteropancreatic) NET make up about 3 in every 100,000 people a year. “When you hear hoofbeats… During their training, physicians are taught the mantra, “When you hear hoof beats, think horses, not zebras.” This means that symptoms are more likely to be caused by more common diagnoses rather than rare diseases. The zebra has become the mascot of the NET community as a representation of the rare disease status of NET. Each zebra’s unique pattern of stripes also speaks to the uniqueness of each NET patient’s disease and journey. Why Recognize Rare Disease Day? RARE DISEASE DAY IS AN OPPORTUNITY TO CELEBRATE PROGRESS. Celebrate the recent progress in the NET research made possible by NET Research Foundation (NETRF) , the leading private funder of neuroendocrine cancer research. The NET community continues to build on the 2019 ground-breaking FDA approval of Lutetium 177, noted as the ASCO Advance of the Year of 2019 . In other words, PRRT , the mode of delivering the treatment, compared to an automobile. Then Lutetium 177 is like the Ford Model T, the first type of car available in the USA. Now, there is work being done to create many other types of cars in different models and styles. Click here to learn more about PRRT. Click here to read more about ongoing PRRT research. RARE DISEASE DAY IS A REMINDER THAT YOU’RE NOT ALONE. Watch zebra stories on our “Patient and Caregiver Stories” YouTube playlist. Read and see zebra stories from the previous blog post, “ Be Inspired. ” Hear the story of our very own Giovanna Imbesi by clicking here. Join us for our weekly patient and caregiver support group here. When you hear hoofbeats, sometimes it’s a zebra… FOR MORE ABOUT NET: Check out the LACNETS Newly Diagnosed page . The blogpost Queen of Soul Aretha Franklin Died of Pancreatic Neuroendocrine Cancer explains why neuroendocrine tumor of the pancreas is not simply a “rare form of pancreatic cancer” and why this distinction matters. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS