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Insurance issues are a common issue in the cancer community. We’ve compiled a list of helpful resources below. Looking for Information about Insurance or Cancer Finances? Watch the “Managing Costs of NET Care and Insurance Coverage” presentation by Josh Mailman at the October 10, NETRF Virtual Conference for NET Patients and Caregivers (15 minutes, video featured below). Watch the Triage Cancer webinar, “Steps for Managing Finances and Insurance After a Cancer Diagnosis ” (44 minutes). Check out the Triage Cancer Health Insurance Resources by Topic . Search the Triage Cancer Toolkit for Navigating Cancer Finances . Have Questions About Open Enrollment? Read the Cancer Support Community blogpost “What You Need to Know About 2021 Open Enrollment.” Watch the NorCal CarciNET Webinar on Medicare for NETS featuring Ann Kayrish, Senior Program Manager for Medicare from the National Council on Aging (NCOA). Looking for Drug Copay Assistance or Other Financial Assistance Programs? Below are copay programs helpful to the NET population: Somatuline® Depot (Lanreotide) Copay Program Sandostatin® LAR Depot (octreotide acetate) Copay Program Bynfezia Pen™ (octreotide acetate) Copay Program Xermelo® Copay Program Creon® financial assistance Afinitor® (everolimus) copay program and free trial program AAA PatientCONNECT (A patient support program including financial assistance and reimbursement support services for Lutathera®.) Patient financial assistance programs for those with government insurance (Medicare, Medicaid, TRICARE) Have Disability Questions? Check out the Triage Cancer disability resources . Watch the Triage Cancer Webinar on Disability . Need to Appeal? Check out the Triage Cancer Quickguide to Appeals . Refer to Triage Cancer Health Insurance Appeals Resources . Watch the Triage Cancer Webinar “Health Insurance Appeals.” NEED TO TALK TO SOMEONE? Contact Cancer Legal Resources Center for telephonic or online assistance. Questions for Triage Cancer ? Email info@triagecancer.org or call 424-258-4628. Triage Cancer has a free Legal & Financial Navigation Program that provides individuals diagnosed with cancer, caregivers, and health care professionals with free one-on-one help in the areas of health insurance, disability insurance, employment, finances, medical decision-making, estate planning, and more. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

LACNETS held its 2020 VIRTUAL Annual NET Cancer Day Symposium on November 7th, 2020. Here are some memorable quotes we'd like to share with your from the symposium: We remember that, as Victor Frankl said, ‘Those who have a WHY to live can bear with almost any HOW.’ We focus each day on our why. — NET Patient Laurie on lessons learned from her first year living with NET My dealing with COVID is how I deal with neuroendocrine cancer. I began walking which led to hiking the day of my surgery… My hiking is an important part of who I am and how I give back to the neuroendocrine family and community. — NET Patient Cindy who hiked the 110-mile Tour du Mont Blanc eight months after NET surgery NET Cancer Day is all about awareness, and we’ve come a long way as a community in terms of raising that awareness…What I want to encourage the NET community is not only raise awareness in terms of diagnosis but take it to the next step. Be able to advocate not only for yourself on a daily basis, but start to think about how you’re going to advocate for the future development of treatments that’s going to potentially impact your life...Today of all days, we’ve seen that YOUR VOICE matters! — Dr. Dan Li, NET Oncologist, City of Hope Like you, we’re focused on moving the field forward. It’s good to have knowledge and be informed always...With all things in life, whether you have metastatic NET or breast cancer or lung cancer, living with metastatic cancer is a whole different ball game. And it takes a lot of courage to push aside your worries and live your life. And make sure you’re maximizing your quality of life. And make sure you’re not forgetting to enjoy the things around you. — Dr. Sandy Kotiah, Mercy Medical Center We understand your hurdles and the difficulties you’re going through...We as a NET community are trying to help you with that...You are NOT ALONE. We are together in this journey...We are going to fight with you...We’re going to be with you all the way! — Dr. Jaydira Del Rivero, National Cancer Institute, NIH LACNETS invites you to add your voice in supporting NET patients and their loved ones. Talk about NETs. Advocate. Contribute to the Vision. Watch the 2020 Virtual NET Cancer Day Symposium Click here for the full video playlist.

Living with NET cancer may feel like being in the midst of a storm. Sometimes it feels like a light drizzle. Other times, it’s a heavy downpour. It’s certainly not sunshine and roses. As Vivian Greene’s popular saying suggests, rather than hunkering down and waiting for things to get better, those in the NET community must learn to find a way to adapt and cope so that we can live fully. Just to be clear, this is not to minimize how difficult it is to live with the disease. It is hard. Sometimes, we need to shelter under our umbrella. We just try to survive the terrible storms. Other times, our deluge of tears mix together with the raindrops. We just need a good cry to release the sadness, frustration, and disappointment. It’s healthy to grieve losses, including anticipatory losses of hopes and dreams we are letting go of. This is not about choosing to see the glass as half full. It’s about being prepared, proactive, and innovative in finding ways to adapt to your symptoms and a new normal. In order to step out from under your umbrella, it helps to be wearing proper rain boots and a raincoat. Likewise, there are steps to take to adapt to living richly and fully, despite living with NET. Here are some suggestions to help you move from sheltering to dancing in the rain: 1. Educate Yourself on Managing Symptoms: Watch the 2020 LACNETS Annual Conference presentations by NET Experts Dr. David Metz (Gastroenterologist) and Dr. Run Yu (Endocrinologist) on Symptom Management: Diarrhea, Hyperglycemia, Diabetes. Watch the 2018 LACNETS Annual Conference presentation by NET Expert Dr. Andrew Hendifar on Managing Carcinoid Syndrome. Watch the June 2018 presentation by Dr. Parisa Sadoughi on Pain Management for NETs . Watch the October 13th, 2020 presentation by Dr. Shirley Paski on Management of Diarrhea in NETs. 2. Prepare with Practical Strategies: Carry your medical information: Set up your emergency information on your smartphone . With both iphones and Androids phones, you can always be carrying your emergency contacts and essential information such as medical conditions, allergies, and current medications. This allows first responders to access important medical information from the lock screen, even without your passcode. For more on setting up your Medical ID in the Health app on your Iphone, click here . For more on setting up your Apple Watch, click here . If you don’t have a smartphone or prefer a wearable medical ID, Emergency RoadID is an example of a wearable medical ID to communicate your vital medical information. Prepare your Advanced Directives. Read our "What Matters Most" blog post . Know your NET VITALS. Review and update your NET VITALS periodically including before and after medical appointments and scans. Carry a copy with you. Track your symptoms. One way to do this is with the Health Storylines App . Organize your care coordinate and communication with your family and friends. A helpful tool is LotsaHelpingHands. Watch the LACNETS May 2020 “What Matters Most” Webinar . 3. Find strategies to allow you to venture out of your house with more comfort: NET patients are often on monthly somatostatin analogues (octreotide or lanreotide) injections to control symptoms or tumor growth. Did you know that NET patients can arrange to get their monthly shot at home? Both Ipsen (the manufacturer for lanreotide) and Novartis (the manufacturer for sandostatin LAR) offer a home administration program and co-pay assistance program . For those who suffer from carcinoid syndrome and require rescue shots, consider asking your doctor about the Bynfezia pen . This is a prescription prefilled multidose pen injector of octreotide that does not require refrigeration. For those who suffer from diarrhea, consider carrying a portable deodorizer such as OneDrop Before-You-Go Toilet Drops . 4. Attend to Your Nutrition: Watch the LACNETS video Nutrition For Nets with NET Dietician Meghan Laszlo . Watch the Carcinoid Cancer Foundation Video With NET Nutritionist Leigh Ann Burns . Read Carcinoid Cancer Foundation's Nutrition Resources . Read NET RESEARCH FOUNDATION’S NUTRITION RESOURCES . Request a free copy Of The “FOOD YOU LOVE” COOKBOOK FOR NETS FROM LEXICON . For those with Carcinoid Syndrome, download the STANFORD CULINARY KIT FOR NET PATIENTS WITH CARCINOID SYNDROME . For those without Carcinoid Syndrome, download the STANFORD CULINARY KIT FOR NEUROENDOCRINE TUMOR PATIENTS . 5. Shifting Your Perspective and Attitude: Read LACNETS blogpost “ Finding Joy: Making Friends With Change ” by LACNETS Founder Giovanna Joyce Imbesi who shares some of the insights she gained in her 14 years of living fully with NET. Read LACNETS blogpost “Breathe” about taking time to be mindful, meditate, or simply breathe. 6. Find Support Ask for help! You have a NET community who cares about you! Read LACNETS blog post “Asking for Help.” There is a dedicated space for family and friends of those living with NET patients (often called NET caregivers, partners, advocates). LACNETS offer a monthly NET Caregiver Support Group open to anyone supporting a NET patient. For more information, read LACNETS blog post “Becoming a Caregiver.” Watch our 2020 Virtual NET Cancer Day Symposium . Palliative Care expert, Dr. Chandana Banerjee gives a presentation on coping and another on caregiving. We NET patients and caregivers have an opportunity here. We can choose to hunker down, stay in survival mode, and hope for the best. Or we can learn to dance in the rain. I hope you join us in dancing in the rain. THANKS TO OUR SPONSORS Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Every good story has a beginning. The story of LACNETS begins with Giovanna Joyce Imbesi , a jazz pianist and composer who was diagnosed with metastatic neuroendocrine carcinoid cancer (or NET) in 2005. As with any cancer diagnosis, Giovanna’s diagnosis was life-changing. It became her mission to help others in the NET community. She created a lasting legacy through LACNETS . Giovanna founded LACNETS in 2012 with Dr. Edward Wolin as the inaugural speaker for the first of many patient education meetings. At that time, Dr. Edward Wolin was the Co-Director of the Neuroendocrine Tumor Program at Cedars-Sinai, Samuel Oschin Cancer Institute. He was a frequent speaker for LACNETS monthly patient education meetings and LACNETS annual meetings, including the 2016 LACNETS Annual Conference. (Click here to watch the video.) Dr. Wolin played a key role in the history of LACNETS. As Giovanna’s physician, Dr. Wolin also contributed to the many years Giovanna was able to live fully with NET. But he was more than just her physician; he was her colleague and friend. Dr. Wolin and Giovanna shared a drive to help the NET cancer community and a passion for music. Theirs was a relationship built on mutual respect and admiration. Even after Dr. Wolin moved to NYC, he and Giovanna continued to remain close. They collaborated on several programs to increase awareness in the community, including Carcinoid Cancer Foundation’s CancerCoachLive webinar on living with neuroendocrine tumors (recorded on August 14, 2019). Dr. Wolin is a highly respected NET expert in the community. In his more than 25 years as a NET oncologist, he has been involved in clinical trials for lanreotide , everolimus , and lutetium-177 DOTATATE (aka Lutathera® or PRRT). Several LACNETS patients have taken part in these clinical trials during his time at Cedars-Sinai. LACNETS is grateful for the deep connection that allows us to maintain a close relationship with Dr. Wolin. We are also grateful for the technology that allows us to invite him into the comfort of our homes during the current pandemic. On behalf of the LACNETS community, thank you Dr. Wolin for the important role you’ve played in our past and our future from our inaugural meeting in 2012 to your research, education, and patient care. You’ve made a long-lasting impact! Farewell party for Dr. Wolin, Cedars-Sinai, circa 2014 Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

A silver lining for me during this pandemic is being able to meet people who I would have never had the opportunity to meet had it not been for the need for Zoom meetings. I was hesitant to join the support group, but I’m so glad that I did. I find inspiration each and every time I attend. — Jan Rattazzi, NET Patient ‘Every cloud has a silver lining’… So goes the well-known saying, meaning that good can be found in difficult or negative situations. The silver lining metaphor refers to the shining (or “silver”) edges of a cloud when it is backlit by the sun or moon. It is a message of hope. Discussions of the pandemic’s silver linings have come up in the news, personal blogs, social media, and conversations. In the NET community, we’ve also discussed our experience with the silver linings of the pandemic. Think back to the beginning of the storm . It’s now been six months since LACNETS canceled our in-person monthly meeting in early March at the start of the evolving pandemic. This was more than a week before “safer-at-home orders” went into effect. The pandemic has changed all of our lives. For example, the once simple and common task of getting groceries has become complicated and time-consuming. Going to a grocery store now involves standing in line to enter with spots marked 6 feet apart, wearing a mask, and being unable to use reusable shopping bags. Others have adopted online grocery shopping. The pandemic has changed priorities. It affects our decisions of when and how often to go to the grocery store. It even affects what and how much we buy. Through this season of uncertainty and change, we have tried to find calm during coronavirus . We have adapted by learning new terminology, adopting new safe practices, and finding new self-care practices. (Click here to read the Finding Calm During Coronavirus blog article , originally posted March 18, 2020.) As a patient that needs to stay home on those “bad” days, I really appreciate all the music, comedy, and other events that have been made available over Zoom, YouTube, and other streaming services. I also appreciate the fact that LACNETS in particular adapted the patient networking time, which formerly was a very short window attached to the monthly meetings, to a generous weekly session that is very helpful educationally, and it’s therapeutic to see and interact with so many friends. — Anonymous LACNETS understands that cancer doesn’t slow down for a pandemic. Therefore, we quickly responded to ongoing needs in the NET community by immediately pivoting to an all-virtual platform and offering virtual support groups for NET patients and caregivers. Despite the coronavirus storm raging around us, many have found refuge through the LACNETS community. Thanks to technology, we have expanded our programs with improved access for all during the pandemic. This has also benefited those who previously could not attend in-person education and support programs. Our weekly support group now regularly includes NET patients and caregivers across the U.S., Canada, and the UK. These Zoom meetings allow patients and caregivers to learn from the personal experiences of others and to support each other. Our community has forged deep bonds. It has been a rich time of connection, inspiration, and hope. We have come together to face NET and the pandemic. We are growing stronger together. We are more resilient. We have been pleasantly surprised with untold blessings. With the storms and clouds, there are also silver linings. Who knows? After this all over, we may even see a rainbow. Silver linings may emerge when you are least expecting them. They just require you to be open to receive them. COVID has been extremely difficult for so many of us and yet if we aren’t able to find some positives amid all the challenges, we are setting ourselves up for more suffering than need be. For me, COVID has been an anecdote for the rat race. I know too well the familiar stress of being swept up in the craziness of daily life and COVID forced the slow down and the need to re-evaluate. This has led to an appreciation for the things that really matter most as small as they may seem. When COVID is a faint memory, challenge yourself to remember what it was that became your silver lining. You now have the choice to let back in what supports YOU. — Mary, NET Patient References: Coronavirus update from LACNETS, published 3/5/2020 LACNETS blog post, Finding Calm During Coronavirus, originally published 3/18/2020 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 THANK YOU TO OUR SPONSORS Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

“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