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You are never too old to set another goal or to dream a new dream. — C.S.Lewis New Year, New You? It’s the beginning of a new year! You may be considering a new year’s resolution, if you haven’t already made one. Merriam-Webster defines a New Year’s resolution as “a promise to do something differently in the new year.” Some resolve to change an undesired behavior, accomplish a personal goal, or otherwise improve their life. The ultimate hope is to live our best life. With or without cancer, we all want to thrive. If you choose to set a New Year’s resolution, here are some suggestions that might help. 1. Set an intention. Take a moment to simply breathe. Be inspired. 2. Choose an area of focus. Decide on one or two long-term goals. 3. Make the goal SMART to increase the chance of success. Specific – What are you trying to accomplish? Measurable – How do you know you’re making progress? Action-oriented – What specific action will you be doing ? To increase the chance for success, goals should involve taking a specific behavioral action. An outcome goal such as losing weight is not fully under our control. On the other hand, behavioral goals such as walking thirty minutes, five days a week is something we can control. Realistic – How doable or attainable is this goal? Time Bound – What is the timeline or target date? 4. Be accountable. Find a buddy. Ask a family, friend, or neighbor to check in and keep you accountable. Better yet, buddies striving to make the same changes often have increased success. Contract with a health coach . A health and wellness coach serves as a guide in learning to make sustainable change. 5. Be kind to yourself. Recognize that you may slip up. Try to allow yourself room to experiment, learn, and grow. You’ll get much more out of it than completing a black and white checklist measuring success or failure. When life happens, the goal may need to be revised to make it more realistic. Acknowledge successes and learnings. Celebrate wins. Reward yourself when you make progress and when you accomplish your goal. 6. Below are some ideas for NET-specific goals. Education Learn your NET Intro . Fill out or update your NET VITALS . If needed, watch the NET VITALS webinar . Attend a LACNETS monthly educational webinar or annual conference . Choose a NET-related topic of interest to you such as nutrition or a specific treatment. Watch related videos from the LACNETS YouTube channel . Listen to The LACNETS Podcast. Take NET quizzes after listening to NETRF’s NETWise podcasts . Read the NETRF’s neuroendocrine cancer guide which can be requested here ( US residents only ). Read the Healing NET Foundation’s “Navigating the NET Patient Journey Guide or High-Grade Neuroendocrine Cancer Guide. Learn more about health insurance, finances, estate planning, or disability by attending a free educational event , watching animated videos , or reading educational materials by Triage Cancer . Community & Support Attend the LACNETS weekly virtual support group. Request a NETCONNECT mentor. Find a therapist through a local Cancer Support Community . Partner with a health and wellness coach . Awareness & Advocacy Share a packet of patient and provider resources from the Ask Me About NETs Challenge with your local medical providers. Read our Spreading NET Awareness blog article . Bring NET materials such as your NET VITALS, the LACNETS rack cards, and copies of the Healing NET Foundation NET Primer to your NET-related appointments. Find a champion at your local medical facility who would be open to ensuring NET-related information such as LACNETS rack cards will be displayed or distributed. Share your story with family, friends, neighbors! Service Attend support group meetings to connect and share your story with other NET patients and loved ones. Volunteer with your local support group. Fundraise by setting up your own Facebook fundraiser or organizing your own fundraiser. Whatever your New Year’s resolution may be, we wish you all the best! You’re welcome to share your resolutions in the comment section below. THANKS TO OUR SPONSORS Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

“Educated patients tend to be happier patients as they have better expectations and feel more comfortable navigating this journey.” — Dr. Tom Hope, UCSF radiologist and nuclear medicine physician We agree with you, Dr. Hope! Knowledge is POWER! While we could go on and on as to why it's important to attend NET conferences, we compiled a list of what we felt are the top and most important reasons to participate: LEARN from NET experts. Build your knowledge & understand more about the disease. Learn about current therapies from the medical community. Get your questions answered. LEARN from other NET patients and caregivers. Be encouraged and inspired by hearing from others who want to take charge of their disease, their health, and their lives. Know you are not alone! Learn from the experiences and insights of others. Be EMPOWERED to be a better partner in your NET journey. UNDERSTAND how to cope with the emotional challenges of living with NET. DISCOVER ways to increase public awareness of the disease. We invite you to join us for our 2022 LACNETS NET Patient Education Conference on Saturday, June 18. The conference is offered at no cost to attendees. This virtual event features: 10 NET experts Live Q&A with the experts Patient stories Educational presentations for both the newly-diagnosed and for zebras who have lived with NET for a long time This year's theme is " Empowering You to Make NET Decisions ." NET patients and caregivers are constantly wrestling with decisions. Our goal is to share the latest in treatments and research to empower and support you. There are several NET Patient Conferences and events each year that take place throughout the country. Click here to learn about upcoming Conferences and events. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

“Does it spark joy?” This is the central question of the widely popular Kondo organization method from Marie Kondo’s best-selling 2014 book The Life-Changing Magic of Tidying Up . The popular Netflix show Tidying Up with Marie Kondo swept the nation with a wave of decluttering. Donation centers overflowed. Social media feeds showed off newly decluttered homes. Kondo’s famous question, “What sparks joy?” is an exercise in assessing the value of our household belongings in order to let go and get rid of “clutter.” Stuff not only takes up space but also can be mentally distracting and emotionally distressing. If something is no longer serving us, Kondo invites us to take a moment to thank the item for its service, and then let it go. The Konmari method is a gratitude practice that begins with greeting and thanking the house itself upon entering and ends with bidding farewell to things that no longer spark joy. The result of a decluttered home is a freer body, mind, and spirit. DECLUTTERING & CANCER With the stress of living with neuroendocrine cancer or caring for someone who does, cleaning out the metaphorical closet might be the last thing we feel like doing. Overwhelmed by doctor’s appointments, scans, monthly injections, researching and learning about the disease, and managing the symptoms, the sheer act of making a decision sometimes feels near-impossible. This is because the diagnosis of cancer or news of recent progression is traumatic. The traumatized mind wants to cling to things that give a sense of stability, structure, and safety, making it exceedingly more difficult to identify and let go of “clutter,” whether that is physical, mental, or emotional. Other than physical possessions, what else is no longer serving us? What “clutter” might not be serving us? What has become unnecessary “clutter” in our minds and spirits? A cancer diagnosis provides an opportunity to re-evaluate one’s priorities and let go of commitments that may be less important. Perhaps this might involve releasing time commitments, career ambitions, old habits, or relationships. Or maybe it means letting go of certain pressures and expectations you have of yourself. Letting go of clutter creates space for possibilities that spark joy. SPARKING JOY Here are some ideas of ways to explore possibilities that might spark joy in your life: Taking up a new hobby Engaging in spiritual practices Exploring a city with a free tour by foot Listening to music (such as original compositions by NET patients Giovanna Joyce Imbesi and Tom Bajoras ) Laughing (with NET patient and comedian Steve Mazan ) Visiting museums (click here to discover SoCal museums – free!) Attending cultural events ( TodayTix ) is one way to access discount tickets for shows.) Watching FREE Hollywood Bowl Rehearsals . Call 323-850-2000 for a rehearsal schedule. Traveling NETRF shares some helpful travel tips for cancer patients here . Checking out your local medical institution or cancer support centers for free healthy lifestyle classes. Simms Mann UCLA Center for Integrative Oncology offers supportive programs open to all (including non-UCLA patients) such as Healing Through Art and Circle of Reflection. Cancer Support Community offers virtual classes including yoga, t’ai chi, reiki, Zumba, nordic walking, circle singing. They also offer adult social activities such as watercolor painting, creative crafting, writing, and cinema wellness. SoCal locations include: WestLA Pasadena Westlake Village Tower Cancer Research Foundation offers FREE virtual sound healing Meditation, group movement, yoga, and exercise classes. Connecting through personal stories with other NET patients: Read LACNETS “Be Inspired” blogpost, published December 19, 2018 Watch inspiring stories from NET patient and caregiver Enjoy Carcinoid Cancer Foundation’s 50th Anniversary video series featuring NET patient stories SPARKING JOY THROUGH COMMUNITY We at LACNETS desire to provide a community of support and education for those with neuroendocrine cancer. We offer a safe place to share our experiences and learn from each other. Community is a wonderful way to explore new possibilities of finding joy. While summer might signify vacation for many, we understand that cancer doesn’t take a vacation. Neither do we! We hope you can join us for one of our upcoming webinars and virtual support groups. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

I never received a manual on how to be a caregiver. — Lisa Yen Becoming a caregiver to someone living with NET cancer looks different for each person. Some embrace this role enthusiastically, while others assume it reluctantly. The relationship with the NET patient may be that of a spouse, sibling, parent, child, relative, or friend. The responsibilities of a caregiver vary and may include physical care, advocacy, research, navigation, collaboration, education, logistics, or communication. (For simplicity, we will use the term “caregiver.”) The common thread is that NET caregivers are vital in supporting a loved one living with NET. This is my story… January 2, 2015 was the day my life was forever changed. That was the day my husband was unexpectedly hospitalized for the first time in his life. Overnight, I took on a new role—caregiver to my husband. I suddenly stopped worrying about everything that used to worry me – big, important things including my career, goals, and ambitions. I also stopped sweating the small stuff—turning 40 with increasing white hairs and unmet goals. It all faded away. What mattered to me became crystal clear. I was 100% committed to walking alongside my husband and supporting him in his NET cancer journey. Although I knew who was most important, I didn’t always know how to best care for my husband. I never received a manual on how to be a caregiver. There have been periods where I’m unable to consult with my husband when he’s simply been too ill. There have been other times when I focused on physical or medical needs and missed the emotional support he longed for. While it’s been a challenge for both of us to learn about NET and how to live with a cancer diagnosis, I recognize that I’ve also been on a separate journey of discovering how to best care for someone living with NET. It’s complicated and ever-changing, full of nuances and shifting roles and responsibilities. It cultivates patience and sensitivity. It deepens intimacy. It’s both hard and rewarding. I could never have imagined I would be in this place. Yet, I’m certain that if my husband must live with NET, there’s no other place I’d rather be than by his side. Many of us serve as partners in the NET journey and yet, our journeys are also our own. LACNETS understands that NET caregivers need care too and so, we are committed to addressing their unique needs. Caregivers often grapple with identity, self-care, and isolation. Caregivers may have questions such as, “Do other people struggle with the same things I’m struggling with and if so, how do they handle it?", “Who can I talk to about my concerns?”, and “How can I be a better caregiver?” We at LACNETS desire to support caregivers by providing opportunities for them to discuss their concerns and experiences. To this end, we invite you to join us for our monthly virtual support group for NET caregivers. This is a 2-hour private forum just for caregivers facilitated by palliative care physician Dr. Chandana Banerjee and psychiatrist Dr. Kim Shapiro. Our meetings are typically held on the last Saturday of every month. RSVP by clicking here. One of the most important lessons I’ve learned in becoming a caregiver is that self-care is now part of the job. It’s no longer optional; it’s essential. Self-care includes receiving our own support and connecting with others with similar struggles. Sharing experiences and insights with others builds inner strength and resilience. We might still not have a manual for how to be NET caregivers, but we have each other. And together, we are stronger. For caregiver resources, visit our LACNETS caregiver page . Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Many NET patients undergo surgery as part of their treatment course. While their medical team might have specific preparation instructions, patients often wonder about practical concerns like how to plan, what to pack, and how to prepare the home. Recently, this topic has come up in our weekly virtual support group and we have had some lively discussions based on first-hand patient and caregiver experiences. (Note: These suggestions do not replace instructions given to you by your medical team.) PREPARE PHYSICALLY Prepare for Surgery: Eat a balanced diet of nutritious foods. This is not the time to start dieting! Hydrate. Make sure you’re drinking plenty of water. Movement matters. Being physically active prior to your surgery can help your recovery Tell your doctor all the medications, vitamins, and supplements you take, as some might increase the risk of heart problems or bleeding issues, or they might affect your anesthesia. You may need to stop taking them 1-2 weeks before the operation. Be honest with your doctor. You might not think your supplements and complementary treatments don’t matter to your surgeon, but they do! Prepare for the Hospital Stay: Prior to surgery, find out the visiting hours and rules. How many visitors do they allow at a time? Is there an age restriction? Can someone stay overnight? Find out when shift changes occur so that you can ask for pain medications before shift changes and warn family members not to call during that time. Have a consultation prior to surgery with your anesthesiologist to discuss your anesthesia and pain management following surgery. Find out who will be managing your pain after surgery and talk with them. You may need to ask for a referral to the pain management team. Manage expectations with work and friends so you are not inundated with emails and text messages. Set up an “out of office” or “away from my desk” notification on email, phone, and social media. It’s helpful to have a way to tell people nicely not to contact you and to not expect a response immediately after your surgery. If you have a friend or family member coordinating communication, let your support team know how to expect updates. Write down your medical team (name, specialty/position/role). The names of your physician, nurse, and aide should be written somewhere visible in your room. Consider filling out employee recognition cards for staff who give exemplary care. This is one of the best ways you can show gratitude for a job well done. Note: If you have a family member or friend at your bedside, this is a task you may delegate. Write things down on paper or on your phone. Sleep deprivation, pain, and excess stimuli may make it hard to remember names and details clearly. Note: If you have a family member or friend at your bedside, this is a task you may delegate. Have family or friends purchase food (e.g. bagels, cookies, donuts) for nurses and bring the items when they visit for the nursing staff. An alternative is pre-purchasing shelf-stable snacks in advance of your surgery for your visitors to bring with them. Thank people often. If you receive flowers, send them home with family members when they visit or consider leaving them for the hospital staff. Packing for Surgery: Pack a small bag for the hospital and have your family bring these items the day after your surgery or keep them in the car. It is best to minimize the items your family has with them in the waiting room with them during your surgery because it may be difficult for them to go to the cafeteria or take a walk outside if they will need to bring your belongings with them wherever they go. Because you usually are not assigned a room until after surgery, you may be in the recovery room or in the intensive care unit where you may not be able to have a lot of belongings with you. Limit the items you have with you at the hospital and send items home with your family if you don’t need them. Suggested packing list: Earbuds (noise cancelling, if preferred) Long charger for phone/electronics Eye mask Earplugs Loose fitting shorts, cozy robe/elastic pants Soft front closing bras Flexible straws, so you don’t need to sit up to take pain pills Items that will bring comfort, e.g a pillow (make sure to have a very distinct pillowcase so it is not mistaken for a hospital pillow) and scents like lavender sachets Nonslip slippers with good grip A notebook to write things down Prepare for Your Return Home: Consider your mobility, pain, and symptoms you might be experiencing after surgery and prepare your home to have items you need on hand, conserve your energy, and prioritize your recovery. Prepare your caregiver list and schedule for after you return home. Consider setting up a meal service or meal delivery from friends and family. Invite a friend, neighbor, or family member to coordinate deliveries to a cooler on your front porch so that you don’t feel obligated to visit with each person. Find out what diet you will be on after surgery so you can purchase appropriate foods or prep meals prior to surgery. Stock your fridge, freezer, pantry with food. Stock up on nutritious foods. Plan for small, frequent meals and lots of fluids. Stock your house with household supplies. Stock your medicine cabinet with over the counter pain medications such as acetaminophen and over the counter stool softeners and laxatives. Plan a system to call for help such as flic buttons or using a hand bell. Consider assistive devices such as a reacher-grabber. Count how many steps you have to enter your home and inside your home. You can ask to see a physical therapist and practice walking up and down stairs before you are released home from the hospital. Movement, hydration, nutrition, and pain control are important to recovery. Narcotics cause constipation so it is important to hydrate and move. You may also need to take stool softeners or mild laxatives. NET patient Julie’s “show and tell” of tips, tricks, and specific items she found useful during her hospital stay and recovery at home Click here for a list of the items Julie mentioned in this video. PREPARE EMOTIONALLY Be prepared to speak up or have someone present who can advocate on your behalf if you have concerns, issues with managing your pain, or difficulty communicating with your medical team. Prepare a music playlist with healing music. Here are a couple albums of instrumental music written by NET patients while they were recovering from surgery: Short Stories - piano music for healing, meditation & relaxation by LACNETS Founder and Executive Director Emeritus Giovanna Joyce Imbesi Surprised By Beauty by NET patient Tom Bajoras Practice mind-body techniques such as mindfulness, breathing, or visualization exercises Belleruth Naparstek has guided meditations to promote successful surgery Peggy Huddleston has a mind-body workshop called “Prepare for Surgery, Heal Faster” LACNETS offers guided meditation and gentle yoga videos UCLA Mindfulness Awareness Research Center offers free programming and resources including the UCLA Mindful App . Insight Timer is a free app with a large library of free guided meditations. Have an honest discussion with your loved ones about your expectations and their expectations. Make sure your caregiver(s) know ahead of time what their roles are. If you are married, it is important not to assume that your spouse will be filling all those roles. Learn to ask for and accept help. Watch this video, “How to Ask For, Accept, and Get the Help you Need” with Kim Hamer. Set realistic expectations. After your surgery, take it SLOW. Listen to your body. There is no need to rush. Know that there will be good days and bad days. The road to recovery isn’t always a straight path. Patients often report that the road to recovery takes longer than they expected. The surgeon might say recovery will take 6-8 weeks; however, this is often the time it takes for the tissues and skin to heal. It may take more time to feel like you are back to what feels normal for you. Take the time the surgeon gives you as an optimistic goal, but don’t be disappointed (especially in yourself) if it ends up taking longer than you expected. Take small steps. Give yourself grace. Special thanks to the LACNETS weekly support group for their contribution to this blogpost WATCH: “NET Surgery: Making Decisions & Preparing for Surgery” featuring Dr. Callisia Clarke WATCH: "Surgery for NETs" featuring NET surgeon Dr. Alexandra Gangi This blog is for educational purposes only. Please consult your medical team about your individual care and treatment plan. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Changes to the skin are very common in oncology patients. Treatments and medications, as well as emotional and mental stressors, may have side effects and reactions. As a result, people may experience skin reactions. Cancer patients may encounter photosensitivity, acne, hives, dry or dehydrated skin, itching, rash, or changes to the fingernails and toenails. Skin issues may be especially problematic during the dry winter season. I’ve compiled some do’s & don’t’s and tips & tricks to help you winterize your skin. Let’s start with a quick physiology lesson of the skin’s lipid barrier, also known as "the skin’s security guard." The lipid barrier is a protective layer that resides directly on top of the stratum corneum, keeping bad things out and protecting the good things inside. This barrier serves as a defense mechanism and maintains adequate hydration for the skin. Source: bit.ly/3qy7tHS Signs of a damaged lipid barrier may include redness, inflammation, dryness, or flaking skin. When the skin starts to feel dry or rough, it’s mainly because of a loss of lipids in the skin. What does your body do when it gets cold? It conserves heat by reducing the blood flow to the surface, because the surface is where it is cold. So, this means you have less blood flow going through your skin. This is part of why your skin dries out. In this dry state, the skin is not turning over as rapidly or being fed as adequately as it should be, so less lipid manufacturing happening, which creates a less intact barrier. The water on the inside of your skin is what aestheticians consider precious water due to its scarcity. Traditionally, oil-based moisturizers are recommended in the winter and creamy moisturizers for summer months. As patients, we may experience this excessive dryness chronically. Tip: Use a combination of oil and a cream. Tip: Use topical oils as a base with your favorite’s creams, hydrators, or moisturizers Trick: Apply oil to needed areas. Let it sit on the skin for several minutes to allow it to soak in. Layer a gel hydrator (aloe vera gel or your favorite gel mask) on top of the oil and wear it overnight. Organic Cold Pressed Emu Oil: This may be used as a standalone moisturizer or as a base combined with a cream. For this oil, less is more. Tip: Use Emu Oil in your nighttime skincare routine. Skin easily absorbs emu oil. Emu oil may help lock in skin moisture, making the skin less prone to cracking or drying out. Organic Aloe Vera Oil : This may be used for both day and nighttime routines. Emollient – Aloe vera oil is a brilliant moisturizer for the skin. Anti-inflammatory – It reduces inflammation and other related signs. Anti–bacterial – It has the ability to kill certain bacteria. Anti-viral – It has the ability to kill certain viruses. Anti-fungal – It has the ability to kill certain fungus. Antioxidant – The oil protects the skin from free radical damage. Cicatrizing – Aloe vera oil speeds wound recovery. Anti-irritant – reduces skin irritation. Organic Arnica Oil : This oil is recommended when experiencing achenes, pain, or stiffness. Tip: Soak a linen cloth in the Arnica oil, wrap it around a cold compress, then place where experiencing any stiffness or aches. Supplements can also be a key factor in helping protect and repair the skin's barrier. Tip: Vitamin B3 is a very effective skin restoring ingredient. Its many benefits include fortifying the skin's surface and preparing the scalp to support new hair growth. It also helps repair UV damaged cells. This can be very beneficial in restoring the skin’s barrier. As we know, many medications cause photosensitivity, causing hyperpigmentation (brown spots) or hypopigmentation (white spots) topically. Tip: Vitamin B3, (or niacinamide), applied topically to the skin as a cream has been shown to reduce visible signs of damage by the sun, reduce blotchiness, and decrease moisture loss. Tip: B3 taken orally or applied topically is suitable for those with sensitive skin. Other benefits are an increase in ceramides, which renew and restore the skin after moisture loss and dehydration. Tip: Vitamin D3 calms inflammation, protects the skin, and improves cell turnover. Deficiencies in vitamin D can negatively impact the skin and weaken the skin barrier, increasing dryness. Vitamin D receptors are in most cells in the body. Vitamin D is one of the leading rejuvenation hormones in the body. Tip: Essential fatty acids help keep the lipid barrier functioning properly. Essential fatty acid supplements/omega fatty acids help to ensure cell membrane integrity and produces healthy skin. Trick: Doubling up on your vitamin D3 intake and adding vitamin B3 is what I like to call the “hydration power duo.” + Source: benefitsmyhealth.com Source: byrdie.com Techniques for maintaining hydration. Do: Always wear sunscreen and reapply during the day! Tip: When applying your sunscreen, tap into skin. Do not rub it in. Do: Get an adequate amount of sleep! During our sleep cycle is when the body is at its most restorative. Trick: The YouTube Channel, “Power Thoughts Meditation Club” offers meditative sleep sounds with frequencies that resonate over 500Hz. Don't over-exfoliate. Our first impulse, when we experienced dry flaky skin is to use a scrub or products containing an alpha hydroxy acid (AHA) or Beta hydroxy acid (BHA). These ingredients can be dehydrating, especially on existing dry or dehydrated skin. Don't excessively rub skin: Over exfoliating and aggressively rubbing the skin can strip the skins natural lipid barrier. This includes using harsh buffing pads, abrasive scrubbers, or loofahs. Do: Use a cream or oil-based cleanser for face and body. Tip: Use a microfiber towel as a washcloth or drying towel. Tip: Use a gentle organic sponge (sponge on both sides) commonly used for dishwashing to apply an oil base to your skin while it is still damp, followed by your preferred day or night cream. Do: Get the circulation going: Exercise can increase circulation and blood flow to the top layer of your skin which increases the lipid barrier’s ability to hold in moisture. Tip: Use lukewarm water when showering or cleansing the face. Tricks: Using a water filter on your shower heads helps remove chlorine and other sediments that can be dehydrating and damaging to the skin and hair. Trick: Consider purchasing a cool mist humidifier for your bedroom nightstand to use when you’re sleeping. Disclaimer: This post represents the opinion of the guest writer and does not represent the opinion of LACNETS. This article is for informational purposes only. The content is not intended to provide diagnosis, treatment or medical advice. Consult with your physician or other healthcare professional regarding any medical or health related diagnosis or treatment options. This information is not a substitute for advice from a healthcare professional. You are advised to seek appropriate licensed medical/professional help. Statements made about specific products in this blog are not to diagnose, treat, cure or prevent disease. References: Medical News Today Ask Dr. Ben Podcast, episode 21 Skin Inc Associated Skin Care Professionals Milady’s Skin Care Reference Guide Etsy Written by Beth Wilbanks DeBlase, LE, LM Esthetic Oncology Specialist & NETCONNECT Mentor

Everyone loves superheroes. We love their strength and power, but their true allure is their selfless acts and fight for justice. Superheroes inspire us to think we can be better than ourselves. They are beacons of hope that there’s a better future. While comic book superheroes are make-believe, we can find superheroes in real life. For those of us in the NET community, one of LACNETS’ superheroes is our late founder and Executive Director Giovanna Joyce Imbesi. Giovanna was a jazz pianist and composer with a heart of gold. She made a profound impact on many in both the music and NET communities. Giovanna was diagnosed in 2005 with metastatic small bowel neuroendocrine cancer. Giovanna did not let her diagnosis slow her down. Instead, like any good superhero, she turned her own personal hardship into a way to help others. Against all odds, Giovanna obtained an MBA degree for the sole intent of launching a NET patient advocacy group in Los Angeles. Giovanna was an extraordinary visionary. Her passion was to build a community of education and support for NET patients and their loved ones. For her work in patient advocacy, she received the 2016 Monica Warner Advocacy Award , as well as the 2019 Cedars-Sinai Patient Leadership Award . Giovanna lived fully despite her diagnosis for 14 years until succumbing to her disease in November 2019, two years ago. On her last day on this side of heaven, Giovanna told us with great pride that she felt her greatest legacy was LACNETS, now one of the largest NET patient advocacy groups in the country. (Read the Legacy of Giovanna Joyce Imbesi blog post . Read the #legendsliveforever blog post .) Giovanna left behind a legacy and a vision. Her vision was to empower NET patients and caregivers by providing a healing exchange of educational resources and emotional support so they may live richly and fully. Watch Carcinoid Cancer Foundation’s beautiful video for #RareDiseaseDay . Giovanna shares how she found her music could heal — both her and others. Many people in general public may have only heard of NET because of celebrities such as Steve Jobs and Aretha Franklin who sadly passed away from the disease. Our hope is to change the narrative from associating this disease with famous people who die from the disease to a growing awareness of the more than 180,000 people who live with the disease. Giovanna wanted us all to know we have the power to change these numbers. In her 2019 blog post Spreading NET Awareness – How You Can Make a Difference , Giovanna wrote, “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.” To this end, LACNETS launched the VISION Campaign. We launched this to coincide with NET Cancer Day, a global initiative to spread awareness about NETs. NET Cancer Day was always special to Giovanna—her birthday is November 9, the day before NET Cancer Day. While we are remembering Giovanna around the two-year anniversary of her passing, this is truly a celebration of life. Giovanna liked to say, “Aging is a privilege.” Giovanna’s perspective of acceptance and gratitude was an inspiration. (Read the Finding Joy: Making Friend with Change blog post written by Giovanna. Read the Gratitude & Thanksgiving blogpost written by Giovanna.) We invite you to contribute to Giovanna’s vision and help continue her greatest legacy. Large or small, every gift matters and is greatly appreciated. If you have benefited from our programs, please consider paying it forward. You can be a superhero too, by spreading Giovanna’s vision to your own network. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

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