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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

News reports of neuroendocrine cancer (also known as neuroendocrine tumor or NET) have often been about famous people such as Aretha Franklin who died from the disease last year. Oftentimes, reports of famous celebrity deaths such as Aretha Franklin or Steve Jobs are the first time people hear about NET. Last week, we learned that Senator Bernie Sanders lost his daughter-in-law Raine Riggs to neuroendocrine cancer. Sadly, she passed away just two days after receiving a diagnosis of neuroendocrine cancer at the age of 48. These deaths then serve as a reference point for the disease to the general public. This means that when we talk about NET, we might say something like “it’s the same type of cancer that Aretha Franklin had.” While these stories increase awareness about NET, we acknowledge that they can be disturbing to NET patients and caregivers. They are unpleasant reminders that NET is unpredictable and rarely curable, and that, sadly, people do in fact pass away from the disease. Such news can be shocking to those struggling to hold onto optimism and hope. We, the NET community, want to shift the focus from dying from NET to living with NET. We want to change this narrative so that people associate NET with living with the disease rather than dying from it. Living with the disease is our reality. With increasing awareness, improved diagnostics for earlier and more accurate detection, and more treatment options, we believe that more and more people will live with NET. This month, there are two ways YOU can help to change the narrative about NET! First, you have the opportunity to make an impact by simply taking a survey called SCAN . By participating, you will join collaborative efforts to collect data from the NET community in order to identify and address gaps in care. Your voice matters! By participating in the survey, you can help identify challenges in access to diagnostics and treatment for NET patients! Under the motto We SCAN, the International Neuroendocrine Cancer Alliance invites NET patients, caregivers, and healthcare providers to share their perspectives of NET. The goal of the survey is to collect robust global data and answer key questions related to awareness and availability of NET diagnostics and treatments worldwide versus the out-of-pocket costs for those living with NETs. Mapping the access challenges worldwide from both the patients’ and healthcare professionals’ perspectives will help the NET community build a strong argument about global equity. The survey is available in 14 languages and can be completed by clicking here until October 31, 2019. Data from the survey will be initially disseminated around World NET Cancer Day, November 10th. SCAN results will be showcased at medical conferences, published in medical journals, presented at meetings with the decision-makers in the healthcare field to focus attention on the gaps in access to early diagnosis, treatment and optimal care globally. Second, we can do this by sharing our stories about what it means to live with NET. One tangible way to share your story is to join the Healing NET Tapestry Project. The Healing NET Foundation is collecting written stories, photos, and videos from patients, caregivers, healthcare providers, or any other person supporting better care to the NET community to share on social media to bring awareness to NET cancer. The deadline to contribute is World NET Cancer Day , November 10, 2019. Join us for the LACNETS NET Cancer Day Symposium on Sunday November 10th at City of Hope. (Read our previous NET Cancer Day blogpost here ).

Perhaps you’ve had this experience…you’re seeing a healthcare provider (nurse, physician, imaging technician, lab technician for example) and they aren’t familiar with neuroendocrine cancer (aka neuroendocrine tumor or NET). Even mentioning Steve Jobs or Aretha Franklin gets the response “I thought they had pancreatic cancer.” Or you’re talking with friends who have never heard of NET. Part of our experience of living with a rare cancer – and a mostly invisible disease at that – is having the opportunity to help educate others about NET and increase awareness. Why does greater awareness matter? I think back to my original symptoms that started around the year 1999 when I was forty-two years old. Severe abdominal pain and bloating led me to the closest ER where I was given morphine to ease the pain. I thought I had food poisoning and didn’t think anything else of it. When it happened again a few months later, the same experience repeated: morphine in ER, return home, and rest. My primary care physician referred me to a gastrointestinal (GI) specialist. I was given a prescription for an anti-spasmodic and sent home. The abdominal pain/bloating/ER cycle happened repeatedly over a period of six years without any orders for imaging until another GI physician ordered a CT scan which led to my diagnosis. It turns out my small intestine was partially obstructed by a slow-growing tumor that had metastasized to my liver. NET patients had an average of almost twelve healthcare visits before being properly diagnosed. Unfortunately, my story is not uncommon. The Global NET Patient Survey published by the International Neuroendocrine Cancer Alliance (INCA) revealed some statistics regarding the number of years from onset of symptoms to diagnosis and the number of healthcare professionals seen before receiving a diagnosis. In the survey, the average number of years from onset of symptoms to diagnosis is fifty-two months! Sadly, 58% are metastatic at the time of diagnosis. NET patients had an average of almost twelve healthcare visits before being properly diagnosed. Each one of us has the ability to help change those numbers in our own community. There are opportunities to share more about NET and add one more person to the extended global family of NET awareness. Consider how we might work together to complete this cycle: For those of us who have gone through a period of misdiagnosis, we know all too well how important this communication is. Here are some suggested ideas, starting with healthcare providers. Please send us your suggestions so we can make this a more NET-friendly world and help others get diagnosed early in their disease. 1. Bring NET materials to your physicians and healthcare providers. The Healing NET Foundation offers a “ Neuroendocrine Tumors: A Primer for Healthcare Professionals. " This booklet summarizes NET information, ways to recognize it and treat it. Bring a copy to all of your appointments as a way to help communicate with your providers. LACNETS Rack Cards – These cards contain information on LACNETS with links to the LACNETS website for educational videos and resources. If you’d like rack cards shipped directly to you, please email events@LACNETS.org. NET VITALS – This is a communication tool for physicians & patients with the top 20 questions vital to understanding neuroendocrine cancer. It is helpful for patients to understand NET terminology and for physicians to learn important terms in treating NET patients. Fill it out and bring your completed NET VITALS to your appointment(s)! 2. Invite your healthcare providers to a LACNETS monthly meeting. 3. Fundraising! Let's get creative! Social Media - Creating a fundraiser on Facebook is super easy and a great way to reach a wide audience. Create one for your birthday, special occasion, or just because it will help people understand neuroendocrine cancer! In 3 easy steps, you can set up a Fundraising Campaign . Start by searching for LACNETS in the list of non-profits. Community events Ask your favorite local business if they will support a NET Awareness Day by contributing a percentage of sales. Hold a bake sale on your block . Share your story! If you’re open to being public about your NET experience, these personal stories are often the most touching and remembered articles and videos. Don’t forget to reach out to your local TV station, newspaper organization and local medical organizations to represent NET! Some good places to start: NET Research Foundation - Patient Stories Healing NET Foundation - Tell Your Story Carcinoid Cancer Foundation - Survival Stories We can do this together! And truly make a difference! One of the most heartwarming experiences of the LACNETS meetings is reaching more patients. The stories of patients meeting other patients, meeting new friends and sharing their journeys inspire others. Sometimes, a NET patient’s spouse or family member might attend a LACNETS meeting alone and then bring the person living with NET to a later meeting. We are always grateful to learn that we have helped in their medical journey. Let’s complete the circle and give back to our healthcare professionals by sharing everything we’ve learned! Towards a more NET-fluent world. A gift of any size supports LACNETS’ free of charge programs and services. LACNETS is a 501(c)3 non-profit. Donations are tax-deductible. Tax ID # 20-0062062. Written by Giovanna Joyce Imbesi LACNETS Founder & Patient Advocate

Change. Change is inevitable, happening daily and in the moment. A delayed flight, change in schedule, unexpected detours. Recently, SoCal had back-to-back earthquakes which literally shook us awake with no advance notice. As patients, we think, "What body will I wake up with tomorrow? Will the pain that was in one place now be in another place? Will my symptoms be better or worse?" We measure change in millimeters with every scan—smaller, bigger, stable. More, less, within normal range, out of range. Some of this is within our control. So much is not in our control. Yet, we insist on resisting change, wanting everything to be the same, steady, manageable, predictable. This is where the conflict comes in – we’re trying to control something that cannot be controlled. As a result, we’re unhappy and we suffer. As neuroendocrine cancer patients, many of us are looking for coping strategies. We need to learn to cope because this is not a quick sidestep through one medical procedure, but years and years of living with cancer. As I’m coming up on my 14th anniversary of being diagnosed in 2005, I’d like to share some of the coping strategies that have helped me throughout these years. Making friends with change The biggest change for most of us as cancer patients was that moment when we were told we had cancer. In a completely incomprehensible whirl of medical terms, many describe that moment where we stopped listening, frozen in this new reality and what it might mean. We may recall hearing that neuroendocrine cancer is a manageable disease. This is the beginning of a long relationship with change – change in our bodies, change in our perspective on life and what really matters. For many, it’s also the beginning of loss – loss of previous roles in careers, in the family and with friends. Accepting what is -- Accepting change Some may recall the name Ram Dass , author of “Be Here Now” first published in the 1970’s. Ram Dass coined the phrase ‘making friends with change’ and spoke about this back in the 90’s. This talk addresses these concepts of allowing and accepting change as inevitable. Being in the moment and being present. Later, after Ram Dass suffered a heart attack, he writes again about accepting change, now living in a wheelchair, and one important point in particular about being dependent on others for assistance. Practice: First, start by noticing when there is a change in your life. Notice how you feel when something unexpected happens, or something you thought would be one way is now different. Tightness, anxiety, resistance? Then try to relax and just be present to the change and notice it, allow it. It could be worse Recently, I heard a TEDx talk by Michael Eselun , oncology chaplain at UCLA Simms Mann. He spoke about compassion and related how so many people he speaks with find the framework of ‘it could be worse’ to be comforting. At least it’s not ________. Fill in the blank. It could have been ________, but it’s only _______. We all tend to do this reframing, and it does give a certain amount of comfort. Which is really gratitude disguised as ‘it could be worse.’ Thank goodness it’s not THAT. Many NET patients may have been told at the beginning of their cancer journey that neuroendocrine cancer is typically slow growing. The implied sentiment is ‘it could be worse,’ another more aggressive cancer. As so many NET patients do, we go to the cancer center for our monthly somatostatin analog injections. It can be a difficult experience, seeing so many cancer patients of all ages. The ‘it could be worse’ thought always comes up for me, especially on months where I’m fortunate enough to get my shot and leave. I feel so grateful to just get my shot and exit the building, back to independent life. As humans, we’re pretty adept at adjusting this sense of better and worse. What we might have thought of as unfathomable in our pre-cancer diagnosis life, we now are thankful for, be it a medication or procedure. Finding Joy through the Door of Gratitude After my initial NET surgery back in 2005, I would evaluate each day with two questions: Am I in pain? Can I eat? If the answers to these two questions were ‘no’ and ‘yes,’ I would declare it a good day! Learning to appreciate even the most basic foundations of pain and nourishment became my mantra. When everything is stripped away (as so much is post-surgery) and the healing process begins, it can seem like so much has been lost. Opening to a new perspective of appreciating what IS good can be life-saving. Appreciation for the small things such as breathing easily and walking slowly. The shift in perspective of actually focusing on the positive is life-enforcing. Perspective Recently, I was sitting in heavy Los Angeles rush-hour traffic, not moving at all waiting to turn onto the Pacific Coast Highway heading north. Looking around, everyone appeared frustrated and agitated, honking to try to edge their way forward in competition. I was smiling from ear to ear, completely ecstatic to be sitting there in traffic and noticing the beautiful blue ocean more than the snarl of cars surrounding me. Just hours earlier, I had been discharged from a 3-day hospital stay and I was so grateful to be 'free,' driving and independent. I took notice of how I was likely the only one so happy to be in standstill traffic. Perspective can alter our interpretation of what comes at us in life. It makes the difference in finding our way on any given day and choosing to notice the good versus the bad and experience joy. As someone who has been living with neuroendocrine cancer for almost 14 years, this distinction has become an essential ingredient in beginning each new day and sustaining the will to live. Connectedness – Investing in our Relationship 401K With all this uncertainty and living with the unknown, our priorities may shift. If you were to write down your top three priorities in life, what would they be? And in what order? For many of us, health and access to excellent healthcare is certainly one. Living with neuroendocrine cancer, a rare disease, can present its own challenges. How do we find community? How do we find expert medical professionals who have experience with NET? In the absence of a general protocol, we are seeking answers from each other as patients and caregivers. Coming together to relate our shared experiences can help take away some of the unknown and offer comfort. Learning from patients who have been living with NET for some years. For some, it’s learning how to manage the multitude of decisions. For others, learning how to live with cancer and be with children. Some partners lean in and become a true companion in the cancer experience. Others find it difficult to relate and pull away. Lifelong friends many not understand how to be there. And in many cases, we’re not talking about the urgency of a few weeks, but truly being there for years and years. Essentially, we’re investing in a different type of 401K – our Relationship 401K. Finding our community through family and friends then makes so many of the other unknowns easier to manage. Ultimately, we may find that what truly matters is our sense of belonging and connectedness. Especially when our former roles of belonging may have shifted. Psychologist and meditation teacher Tara Brach often speaks about belonging. There is research showing that people with strong community ties live longer. As cancer patients with a rare cancer, we may feel isolated. And confused as friends say “But you look so good!” Many cancer centers are recognizing the significant impact of cancer on social aspects of life and relationships. Some offer guides and recommend support groups. Some offer wellness classes and groups such as the GRACE program . For people who are facing profound moments in their life, there is a way in which they will open to truth in a way that people who think they’re winning don’t. — Ram Dass At LACNETS , we strive to provide a social home, a community where stories can be shared with others who can truly relate to all we go through with living with NET. Our monthly programs during the year often focus on medical information from NET experts as well as providing a place of gathering and time to meet new friends. RESOURCE LINKS: Ram Dass Making Friends with Change talk Michael Eselun TEDx Talk: Michael Eselun, oncology chaplain, UCLA Simms Mann - Talk on compassion as a recipient of the 2019 Semel Institute Eudaimonia Award Circle of Reflection support group with Michael Eselun @ UCLA Simms Mann TED talk: Ingrid Fetell Lee “Where Joy Hides and How To Find It” Wellness, Resilience & Survivorship Programs @ Cedars-Sinai Programs for Patients Living with Cancer @ City of Hope Forest Bathing - Shinrin Roku RECOMMENDED READING: “The Five Invitations – Discovering What Death Can Teach Us About Living Fully” - Author Frank Ostaseski Written by Giovanna Joyce Imbesi LACNETS Founder & Patient Advocate

There seemed to be a renewed sense of community, of people connecting and meeting. These were things we hoped would happen by attending in person. People commented it was uplifting and inspiring, and even FUN - something not easy to do at a cancer conference! — Giovanna Imbesi, LACNETS Executive Director On Saturday, June 8th, the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) presented the 2019 Annual Los Angeles Neuroendocrine Tumor Patient Education Conference in coordination with Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute, City of Hope, and UCLA Health at Cedars-Sinai Medical Center. Each participant was given a tote bag, printed with the LACNETS motto, “ Connect, Learn, Thrive .” CONNECT People had opportunities to mingle and connect with others. Prior to arriving at the conference, first time attendees were welcomed by peer mentors from the NETCONNECT team. Lunchtime roundtable discussions offered opportunities to ask NET experts questions in an intimate, informal setting. Photo: NETCONNECT Team LEARN The theme of the conference was “ More Options, Better Decisions .” Presentations from NET experts describing the latest advances in NET including surgical options, liver-directed therapies, and PRRT offered hopeful treatment options. THRIVE We laughed and we cried. Andie Bolt, a comedian, emcee, and daughter of a NET patient, kept the audience laughing. The surprise tribute and presentation of the Cedars-Sinai Patient Leadership Award to LACNETS Executive Director Giovanna Imbesi moved many of us to tears. Photo: Andie Bolt & Terry Bolt While the 2019 Annual Los Angeles Neuroendocrine Tumor Patient Education Conference may be over, our mission is not. We invite you to continue to connect, learn, and thrive along with us. WATCH videos from the conference on our LACNETS YouTube Channel . LEARN MORE about radiation safety, nuclear medicine imaging (i.e. Gallium68 scans) and treatment (PRRT) at the annual SNMMI Patient Education Day . Hear from world-renowned experts such as Dr. Richard Baum from Bad Berka Germany, Dr. George Fisher from Stanford, Dr. Erik Mittra from Oregon Health & Science University, and Administrative Nurse Linda Gardner from UCLA Health. For those unable to attend, Josh Mailman will livestream the event . JOIN US at upcoming LACNETS monthly meetings. CONTRIBUTE to future meetings, programs, and conferences. ( LACNETS is a 501©(3) organization) . If you’ve enjoyed and benefited from the LACNETS Annual conference, monthly meetings, programs, or educational blogs, 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. I’ve been living with neuroendocrine cancer for 9 years and this is the first time I’ve ever met other patients. I feel like I’ve found my new family and it’s so good to know there is support. — Patient Attendee from outside California Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

With the LA marathon just around the corner, we dedicate this 3-part series to “NET marathon training.” This is because people often compare living with NET to running a marathon rather than a sprint. Marathon Training Part 1 addressed understanding the race and proper pacing. We explained the science behind the stress, specifically the body’s response to stress by releasing stress hormones to perceived threats that cause the body to break into a sprint. In Marathon Training Part 2 , we introduced a strategy to slow our pace and build resilience to sustain an endurance run. The strategy is to train our bodies to respond to stress differently. It involves understanding your own unique stress by breaking it down into its common elements: N ovelty, U npredictability, T hreat to ego, and S ense of no control. After deconstructing your stress, the next step is to reconstruct the stress by training your body to interpret the stressor differently. In this third and final part of our NET marathon training series, we will discuss rest and recovery. While putting in mileage (i.e., education, research, medical appointments) is important in marathon training, there is also an art to recovery. While we suggest different techniques, there isn’t a one-size that fits all. Just as each runner has a unique gait and stride, each person living with NET has individual needs and different responses to stress-reduction techniques. There isn’t one right way to de-stress. Unfortunately, there simply isn’t a quick fix. Avoiding the stressor also doesn’t work. The important thing is that you find constructive ways to de-stress that work best for you. STRESS RECOVERY TECHNIQUES & TOOLS 1. Talk it out: Empathy helps Find people to talk to. To be more specific, find the right people to talk to. Find people that you feel safe talking to, people that you feel can provide the type of empathy and support you need. Here are a few suggestions: Join a local educational/support group. Click here for a directory of NET support groups. If you are in the Los Angeles area, we encourage you to join LACNETS at our monthly meetings and educational events . Joining our meetings remotely via LACNETS Facebook or LACNETS YouTube . Watching the recordings at a later time on the LACNETS YouTube Channel is also an option. Connect with others online. Click here for a directory of online support and discussion groups. Circle of Reflection at Simms/Mann-UCLA Center for Integrative Oncology Cancer Support Community provides online and in-person support services. Counseling: Cancer Support Community Ask your oncologist for a referral. To learn more about counseling, click here . 2. Mindfulness & Meditation: Pause and find an anchor. Allow your breath to be your anchor. Taking a moment to focus on your breath can help set your intention on how you run the race. Focusing on your breath helps slow down the rate of your breathing and pulse, resulting in a more sustainable pace. If you’re a religious or a spiritual person, carve out time for prayer and other spiritual practices. Mindfulness and meditation resources can be found here . 3. Pets: Find a furry friend. Learn about pet adoption from Petfinder or Shelter Pet Project. If you don’t own a pet, consider volunteering to walk or transport dogs with a local rescue organization like Wags & Walks in West LA. 4. Art: Tap into your creativity. Try art therapy at places such as Cancer Support Community . Color in a coloring book. Paint with finger paint or watercolors. Join a paint party at a place such as Painting with a Twist . Take a pottery class at a place like Color Me Mine . Journal or write poetry. 5. Move: Get up and move. Go for a walk. Dance to your favorite music. Explore a new place. Garden. Try a new activity. 6. Play: Let your inner child out Blow bubbles. Splash in the ocean. Play a musical instrument. You don’t need to have musical talent. Strum a guitar or ukulele, beat on a drum, clang a cymbal, or blow into a harmonica. 7. Listen: Music heals. “ Give Me Peace ” and “ Hush ” are composed and produced by our very own Giovanna Joyce Imbesi. “ Surprised By Beauty ” is music composed by Tom Bajoras since his diagnosis with NET. The music is inspired by experiences of surprising encounters with beauty amid suffering. 8. Laughter: Laughter is great medicine. Laugh with the NET patient and comedian Steve Mazan . As you run your race, know that you’re not in this alone. Look around and see the others running alongside you and others cheering from the sidelines. You’ve got this! Living with NET is a marathon, not a sprint. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS