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- Written by Lisa Yen, NP, NBC-HWC Zebras on my mind… Lately, I’ve been thinking a lot about zebras. The zebra has become the international symbol for neuroendocrine cancer (NET) with patients often wearing zebra outfits and paraphernalia. The reason for this is because physicians are told during their training, “When you hear hoof beats, think horses, not zebras.” In other words, doctors are taught to focus on the more common diagnoses instead of the rare causes. Think zebra has become the mantra of the NET community . Not only is the zebra a representation of the rare disease status of NET, the fact that each zebra has a unique pattern of stripes also speaks to the uniqueness of each NET patient’s disease and journey. One zebra is beautiful...A herd of zebras is a sight to behold. If you’ve ever seen a zebra, you know that the true magic of their stripes happens when zebras gather in a large group. In a herd, the pattern of each zebra’s stripes blends with those of the surrounding zebras. Predators such as lions see a large, moving, striped mass rather than individual zebras. This confuses the lion and as a result, it keeps the zebras safe from the herd. Zebras do better in a herd! WHAT IS NET CANCER DAY? NET CANCER DAY is an annual international event dedicated to raising awareness of neuroendocrine tumor (NET). NET CANCER DAY is a day for YOU. If you or your loved one are affected by NET cancer, it is a day to bring information and hope to you. It is a day for your voice to be heard by raising awareness to this rare disease. The ultimate goal is to improve diagnosis and care of those living with NET. Read more about why a Worldwide NET Cancer Awareness Day affects you here . WHAT IS THE LACNETS NET CANCER DAY SYMPOSIUM? Our goal for the 2018 NET Cancer Day is to provide information about supportive services for NET program . WHAT CAN I DO TO RAISE AWARENESS OF NET CANCER? Talk: Share your story with friends, family, acquaintances, healthcare providers, and on social media. Walk: Come to the LACNETS Symposium on November 10th. Give: Fundraise, Volunteer, Donate. Hope! Always hold onto hope! Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

"Before we all started carrying cell phones or GPS units, cairns provided a timeless means of communication. They say: ‘You are here. You are not alone!’” — David B. Williams; Cairns: Messengers in Stone On a recent trip to Iceland, I was fascinated by the sight of ancient cairns. These were not simply piles of delicately balanced rocks left by tourists at breathtaking viewpoints. Instead, these cairns were impressive pyramid structures looming taller than an average human. They had served as trail markers for hundreds of years before the invention of cars and GPS units. I closed my eyes and imagined what it must have been like to journey through the rugged terrain of Iceland with these cairns as my guide… Imagine being lost and alone, unable to find your way on the dark, uncertain path. The skies are gloomy and overcast, and the unrelenting wind chills you to the bone. There are no signs of life around you. You waiver between tears and a state of panic. You want to give up. Suddenly, out of nowhere, you catch a glimpse of something off in the distance…a pile of rocks in a recognizable shape. You instantly know it is a cairn. It is so simple and rugged, formed of rocks of various sizes to balance into a sturdy pyramid. With each step closer to this pile of rocks, you can finally breathe again. You hadn’t even noticed you were holding your breath. A huge wave of relief washes over you. Somehow, by seeing that pile of rocks, you know you’re going to be okay. Not only do the rocks mark the way, they tell you that you’re not alone and that others have traveled on the same path. You suddenly feel a little less alone, a little less scared. It sparks a bit of hope somewhere deep inside. You muster up the courage to continue on the journey with a lightness in your step…and in your heart. There is something calming and at times, moving, about the sight of a cairn. Perhaps our emotional response is because of the cairn’s meaning. It is more than a pile of rocks marking the trail. The cairn carries significant messages. Geologist David B. Williams writes in his book Cairns: Messengers in Stone how cairns convey three messages: “The first is communication, for cairns are arguably one of humanity’s earliest ways of sharing information. The second is connection, in that people often build a cairn or add a stone to one as a means of connecting to place, history, and/or family. And, finally, cairns are a sign of community, of travelers, of hikers, of explorers; each time we build one or rely on one we are bonding with those who came before and will come later.” — David B. Williams, Geologist Cairns are a timeless means of communication crossing many barriers. The experience that travelers have when they see a cairn is what I hope for those who are on the journey of living with neuroendocrine tumor (NET). With all its unexpected twists and turns, those of us navigating this journey can feel lost and anxious, as past explorers did in Iceland. Because the stress and anxiety of uncertainty may feel overwhelming, we yearn for a cairn to help guide the way. The good news is there is a cairn along your journey. A health and wellness coach (or simply “health coach”) can serve as a guide, or a cairn, on your journey. By partnering with a health coach, you experience the powerful message that you are not alone. Connecting with a coach and with a deeper community of past, current, and future fellow travelers through groups such as LACNETS cultivates and inspires resilience. These experiences positively influence the traveler’s narrative to create one of resilience. To this end, I am excited to announce that LACNETS is offering one-on-one telephonic coaching sessions to NET patients and caregivers who are motivated to invest in their own self-care. Health coaching is an opportunity for individuals to invest time and energy in self-care by going through a personal journey of change with a health coach as a guide. To be clear, coaching isnot about seeking or receiving medical advice, nor is it therapy . The role of the health coach is not to give advice, prescribe a plan, or tell the client what to do. Health coaching is not about obtaining information about NET. (For NET-specific information, visit our resources page. ) Instead, health coaching is a personal journey of making positive behavioral change toward self-care with a coach as a guide . Just as a cairn does not affect the external conditions such as the weather nor the length of the journey, health coaching is not intended to specifically address the medical aspects of the NET journey. The focus is not on disease management or treatment but rather, the focus is on improving one’s quality of life . The coach guides the client in defining and clarifying his/her own health and wellness goals and helps the client move toward those goals in an incremental, manageable way. “Adding life to years is as important as adding years to life.” — Ronny Allan, NET Patient & Patient Advocate While the NET journey may be unpredictable with factors outside of the patient’s control, the client can choose to work on lifestyle choices within one’s control that may include nutrition, movement, sleep/rest, mind-body connection, spirituality, environment, or relationships, just to name a few. Through this process, the client gains the knowledge, skills, and confidence to make lasting and positive behavioral changes. Doing so fosters hope, clarity, and gratitude. With the guidance of a “cairn,” the client develops a new narrative of resilience so that the client can persevere in his/her journey with NET. You are not alone. There is hope. There is a cairn along your journey. For more information on Health Coaching, click here. If you would like to sign up, please fill out this form here . *Note: This program is currently available for U.S. residents only. Limited spaces are available. Applicants will be taken on a first-come basis. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

LACNETS Patient Education Seminar Andrew Hendifar, MD, Oncology, Cedars-Sinai Meeting Date: October 9th, 2018 Location: Cedars-Sinai Medical Center Q&A with Dr. Andrew Hendifar 1. I HAVE HEARD IT IS ADVISED NOT TO TAKE A HOT BATH FOR 24 HOURS AFTER A SANDOSTATIN INJECTION. WHAT DO YOU THINK? Dr. H : I am not aware of any issue with taking a bath. 2. IS HIGH BLOOD PRESSURE (HYPERTENSION) A SIDE EFFECT OF SSA? Dr. H : Typically, no. It is not something we see often with SSA. It is usually related to the disease, carcinoid syndrome or other things going on in life. 3. DOES SSA INTERACT WITH OTHER MEDICATIONS? Dr. H : Nothing comes to mind. 4. HOW FAST DOES SANDOSTATIN GET INTO THE SYSTEM? Dr. H : I’m not sure it really matters. Both work for symptom control and to control tumor progression. Looking at how the drugs work (pharmacodynamics or pharmacokinetics) not something we really need to worry about. 5. WHAT HAPPENS IF A DOSE IS MISSED OR SKIPPED? Dr. H : Forgetting a dose for a few weeks is typically okay. We don’t encourage it but it’s probably okay. For those with carcinoid syndrome, this is more of a concern. 6. WHAT ABOUT RUBBING THE INJECTION SITE? Dr. H: I wouldn’t worry too much about it. There are some little intricacies to the injection and even if it doesn’t go perfectly, I wouldn’t worry too much about it. Note about memory: One thing we do worry about is memory. I’m convinced that the tumor may have some effect on that. Also, memory may be affected by aging. If memory is becoming an issue, address it. There is neuro-psych testing that can evaluate if there are other things affecting memory that can be addressed. 7. I HAD AN EXPERIENCE WITH AN INJECTION GIVEN VERY QUICKLY WHICH RESULTED IN A LOT OF PAIN FOR 24 HOURS. Dr. H: Giving any shot slowly (into the muscle) helps. Sandostatin is a large volume of medication injected in the muscle so pushing this into muscle is uncomfortable. Giving it slowly can help. Walking is often the best thing you can do for discomfort after sandostatin. 8. IF YOU HAVE PROGRESSIVE DISEASE, WOULD YOU SWITCH TO ANOTHER SSA? Dr. H: There is no research to suggest that switching SSA would help. 9. HOW LONG SHOULD THE MEDICATION BE GIVEN OVER? Dr. H: Lanreotide is injected over 20 seconds. 10. IF THE MEDICATION IS NOT GIVEN PROPERLY, DOES IT AFFECT THE EFFECTIVENESS OF THE MEDICATION? Dr. H: Typically, the biggest issue is pain and not the effectiveness. If there is a concern, you should discuss this with your physician. 11. WHAT ABOUT CHECKING THE LEVELS OF THE SSA TO SEE IF WE ARE AT THE OPTIMAL LEVELS IN OUR BLOOD? Dr. H: I would not encourage it. In the past, these were the only therapies available. It used to be standard practice 20-30 years ago to check levels and adjust the medication accordingly. Now, most of the formulations work very well. Checking levels is typically not practical nor helpful. Also, checking levels requires correct timing and careful laboratory testing. It introduces a lot of uncertainty. Nowadays, there are many other therapies and it may not be worth our time and effort to check levels to guide management. 12. I HAD AN EXPERIENCE WHERE THE MEDICATION WOULDN’T GO IN AND THE NURSE HAD TO GIVE THE INJECTION ON THE OTHER SIDE. IS THAT OKAY? Dr. H: Unfortunately, that happens sometimes from the medication thickening. It is okay…nothing was wrong with the medication. Getting the medication on the same side two months in a row is okay. Switching injection sites is mostly for comfort. 13. WHAT IS THE MAIN SIDE EFFECT FROM THE SHOT? Dr. H : The biggest side effect is that the medication causes the pancreas to produce not enough enzymes to digest your food. This is “EPI” == Exocrine pancreatic insufficiency. Your fat digestion isn’t as good as it should be and your diarrhea changes to a light color. It can be oily and it might float. The symptoms can worsen with certain things you eat. You can take pancreatic enzymes (pancrelipase). There are 3 different types that need a doctor’s prescription: creon, pertzye, zenpep. They all work. Unfortunately, the co-pays can be quite high. The enzymes are porcine. When you get them over-the-counter, it is hard to say. 14. IF YOU DON’T HAVE DIARRHEA, SHOULD YOU STILL TAKE THE ENZYMES? Dr. H: No. Even if you have diarrhea, if it’s a little bit, you don’t necessarily need to take it. The biggest issue is a misunderstanding of what is going on. Patients often think that they don’t have carcinoid syndrome and then once they start getting the shot, they have carcinoid syndrome. This isn’t necessarily the case. It is often an issue with understanding what is happening, that diarrhea doesn’t mean you now have carcinoid syndrome but that there is fat malabsorption or EPI. Once you have a correct understanding of what is going on, you can work with it and go from there. 15. WHAT CAN BE USED OTHER THAN SSA? WHAT ABOUT IMMUNOTHERAPY? Dr. H : Start first with SSA, if you are a candidate for it. If you have poorly differentiated NET, you are typically not on SSA. If you have well- differentiated, SSA is an option. It depends on what location the tumor is coming from: If you have pancreatic, lung, or everywhere else, everolimus is an option. If you have the same receptors that light up on the Gallium 68 scan (somatostatin receptors), PRRT is an option. This delivers radiation to the tumor by attaching it to a radionuclide. Immunotherapy is still under research and it depends on tumor type and location. We don’t know yet if it will work and for which patients it will work for. If you have poorly differentiated or high grade, immunotherapy seems to have a more role. If you have a high grade lung NET, immunotherapy is approved. There are many more studies that will be happening with immunotherapy in combination with other treatments. You want to start with treatments that are known to work before trying treatments that are not yet known to work. 16. WHAT ABOUT TAKING PROBIOTICS? Dr. H: Probiotics can be helpful with diarrhea since factors such as being in the hospital, stress, and antibiotics can affect the gut flora. I recommend you get it from yogurt ( no added sugar ), meaning natural sources. Taking supplements is okay too. 17. WHAT CAN THE PATIENTS DO IF THERE ARE ISSUES WITH THE SHOT? Dr. H: Give feedback to your physician about any issues you might have and if needed, ask for more training to be provided to the nurses. The medication comes with instructions. Both pharmaceuticals have available resources and can come into the office to give training. 18. IF YOU’VE TRIED CREON (AND ON THE RIGHT DOSE & RIGHT TIMING) AND STILL HAVE DIARRHEA FROM THE SSA, CAN YOU TAKE IMODIUM? Dr. H: Yes, if you take imodium short-term. Make sure you’re on the right dose of pancreatic enzymes as it is often underdosed. The appropriate dose of pancreatic enzymes is 1,000 units per kilo per meal so for a normal person, this is 70,000 units per meal. Make sure you’re taking pancreatic enzymes at the right time which is right before the meal and also before snacks. If you are eating over a long time (i.e. long meal), you might have to take some more enzymes. 19. CAN INCREASED NIGHTTIME URINARY FREQUENCY BE RELATED TO SSA? Dr. H: It is typically not related to SSA. It might be related to high blood sugars. It might be related to prostate issues; you might need to talk to a urologist. 20. SOME PEOPLE MENTIONED FATIGUE AS A SIDE EFFECT, HAVE YOU EXPERIENCED THAT? Dr. H: I’ve had patients report fatigue. However, it’s hard to say what the fatigue is from. Fatigue is a commonly report side effect of any cancer. 21. IS DIARRHEA FROM CARCINOID SYNDROME OR FROM EPI (EXOCRINE PANCREATIC INSUFFICIENCY)? Dr. H: If you didn’t have diarrhea (and stomach pain from bloating/gas) before starting SSA and then after starting, you have diarrhea (and stomach pain from bloating/gas), you do not have carcinoid syndrome. This is from EPI, exocrine pancreatic insufficiency of fat malabsorption. The most important thing is that you don’t stop the therapy. There is a good solution: pancreatic enzymes. EPI can cause gas, bloating, stomach pain, and diarrhea that happens after you eat and is worse with eating fatty foods. 22. SHOULD I BE ON OCTREOTIDE DURING SURGERY? Dr. H: If you do not have carcinoid syndrome, you don’t need to be on octreotide during surgery. If you have carcinoid syndrome, you should be on octreotide during surgery. You should tell the anesthesiologist. It is important that your medical team is aware and prepared. RESOURCES: Santa Monica pharmacy offers a wide selection of digestive enzymes and Creon alternatives. Speak with Pam. Click here to learn more . For more resources including additional information, financial assistance, a symptom tracking app, please visit the LACNETS resources page here .

UPDATE: Did you know that NET patients can arrange to get their monthly shot at home? Ipsen (the manufacturer for lanreotide) and Novartis (the manufacturer for sandostatin LAR) offer a home health administration program. (Medicare and other government programs may be excluded.) Ipsen offers a home injection program for lanreotide, through its IPSEN CARES® program at (866) 435-5677. Novartis offers a mobile administration program for long-acting octreotide through its Patient Assistance Now Oncology (PANO) program at 1-800-282-7630. It’s that time of the month again… You receive your usual reminder for your monthly shot. Today is the day. You jump into your car and fight typical LA traffic to get to your oncologist’s office. You rush to check in on time and then wait the required 30 minutes for the medication to come to room temperature. After being escorted into the office, a blood pressure cuff squeezes your arm while you hold an ET-like probe on your forefinger and a thermometer probe under your tongue at the same time. You laugh at yourself as you awkwardly try to balance all the instruments for a minute or two. You are weighed, measured, and ushered into a sterile-appearing exam room. You wonder who will give you your shot today. Your anxiety and stress level have been rising steadily for over an hour, peaking just when an unfamiliar face enters the room with a familiar syringe in hand. Your heart sinks. As you leave the office, you might feel a bit sore. Or, you might be floating with joy as you pass other cancer patients in the waiting and treatment areas, grateful for the ease and simplicity of your experience. You just received your once-a-month shot to treat your neuroendocrine tumor, yet you don’t feel like a cancer patient. Why is there such a range of patient experiences with the shot? What can be done to make my experience with the shot better? Maybe you haven’t experienced physical discomfort with “the shot.” Maybe they don’t bother you at all. Or maybe, after a few weeks, your medical bill arrives, and you are shocked. You start calculating the amount of debt you’ll accumulate over months and years. How can I get some help to pay for these shots? Artwork by Nancy Marsden A few months later, you’re due for your regular scan. You are bewildered when you see in your report “hypointense lesions within the subcutaneous fat within the lower abdominal wall” or “new nonspecific lesions within the subcutaneous fat” or “nonspecific nodules within the gluteal fat” or “granulomas within the subcutaneous fat.” Fear and anxiety begin bubbling up inside as you wonder if these findings are new tumors or if it means that you did not receive all of the medication from your monthly shot. While these experiences may not be universal, they are common. The patient’s experience of somatostatin analogs (SSAs) continues to be one of the most common concerns regularly voiced at patient support group and education meetings. Here are some common questions: WHAT ARE SOMATOSTATIN ANALOGS (SSA’s)? Somatostatin is a hormone that is naturally produced in many parts of the body. Somatostatin analogs (lanreotide and octreotide) are synthetic versions of somatostatin that mimic its action. SSAs are considered the “first line therapy” for NET, meaning that that it is typically the initial treatment that NET patients receive. Somatostatin analogs (octreotide/lanreotide/vapreotide) are now available in the US and other countries in three forms: octreotide - (trade name) – Sandostatin s.c.®, and Sandostatin LAR® (given every 3-4 weeks) manufactured by Novartis lanreotide – (trade name) – Somatuline®, manufactured by Ipsen HOW DOES “THE SHOT” HELP ME? Artwork by Nancy Marsden There are two benefits of taking a SSA : Symptom control of “carcinoid syndrome”: SSAs work by blocking the overproduction of hormones by the tumor cells that cause unpleasant symptoms such as flushing, diarrhea, and wheezing that affect the quality of life of NET patients. This may mean receiving a injection once a month. Some patients may also self inject a short-acting form of octreotide (known as a “rescue injection”) which can be given one to four times a day to help control symptoms that persist despite the monthly shots. Tumor control: Long acting SSAs are the mainstay of NET treatment as they have been shown to slow down or even reverse the rate of tumor growth. This is supported by research from the CLARINET (lanreotide) and PROMID (octreotide) studies showing that these long acting SSAs can stop the growth of NET cells, resulting in slowing tumor progression. WHAT CAN I DO TO MAKE “THE SHOT” LESS PHYSICALLY, EMOTIONALLY, OR FINANCIALLY STRESSFUL? 1. Educate yourself. Attend the upcoming LACNETS meeting. To register, click here . Here are some useful resources: Excellent summary of SSAs (Somatostatin Analog Therapies) Patient advocate blog post (with videos) Technical article about management of midgut NET Somatuline Depot (lanreotide) info & resources Sandostatin LAR Depot (octreotide) patient resources Sandostatin LAR Depot (octreotide) Carcinoid Syndrome Sandostatin LAR Depot (octreotide) Facebook Page 2. Keep a record. Journal about your experience, side effects, symptoms. Journal about your carcinoid symptoms in the period in between shots. Keep a record of injection sites so YOU know and can inform the nurse when you arrive for the next appointment. Click here for a useful app for record keeping. 3. Communicate. Talk to your physician. Share your experience with your medical team. Communicate with the medical professional(s) who are administering your injection. Let them know what has and has not worked for you. Ask questions. Talk to the patient navigator. 4. Get Help. Ask a friend to go with you to appointments. Talk to a representative or nurse from the manufacturer Novartis or Ipsen to ask your questions, voice your concerns, and provide feedback about your experiences. They may be able to send a nurse educator to educate the staff where you receive your injections. Talk to your physician. Talk to the patient navigator. Try relaxation techniques such as mindfulness, meditation, or progressive muscle relaxation. For financial assistance, enroll in the patient co-pay assistance program through the drug manufacturers: For Somatuline Depot (lanreotide) www.ipsencares.com OR CALL (866) 435-5677 For Sandostatin LAR Depot (octreotide) https://www.hcp.novartis.com/products/sandostatin-lar-depot/carcinoid-syndrome/access/ or call 1-800-277-2254 WHAT QUESTIONS DO YOU HAVE ABOUT SSA’s? Octreotide or Lanreotide? Which one should I be taking? How often should I be taking it? How often can I take it? What if I have symptoms in between my shots? Should I stop taking SSAs while I’m undergoing medical procedures (PRRT, surgery, chemotherapy, etc.)? Will SSAs interfere with the accuracy of my Gallium-68 scan? What are some of the possible side effects from SSAs? What if I miss a shot? What if I have to skip a month (for example traveling or sick)? Learn from other patients at the next LACNETS Virtual Support Group meeting. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

“Say a little prayer for the family of Aretha Franklin…and also those fighting this disease." By now, you’ve probably heard the tragic news that soul legend Aretha Franklin passed away at 9:50am on Thursday, August 16th from "advanced pancreatic cancer of the neuroendocrine type," which was confirmed by Franklin’s oncologist, Dr. Philip Phillips of Karmanos Cancer Institute in Detroit. Though this 18-time Grammy Award-Winning singer and songwriter known for hits such as “Respect,” “Natural Woman,” and “Say a Little Prayer” battled health issues for years, she chose to guard her privacy rather than reveal any details. People knew that she underwent surgery in December 2010 , after which she claimed “ the problem has been resolved ." Arethra Franklin’s death comes only three days after reports that she was " seriously ill .” This loss is felt by all. Until now, perhaps the most famous celebrity to die of neuroendocrine cancer (aka neuroendocrine tumor or NET) was Steve Jobs. In March of this year, Bollywood actor Irrfan Khan, known widely for his roles in Slumdog Millionaire and Life of Pi , revealed that he had been diagnosed with neuroendocrine tumor (NET). While there has been a rise in the attention given to NET following the death of Steve Jobs, there continues to be much public misunderstanding. Today’s news was a good example of this. News reports of Aretha Franklin’s death are making the common mistake of confusing pancreatic adenocarcinoma with pancreatic neuroendocrine tumor. To help clear up some of this confusion, here are some FAQs: IS NEUROENDOCRINE TUMOR OF THE PANCREAS A “RARE FORM OF PANCREATIC CANCER?” NO! It is in fact not a “pancreatic cancer”. It is a distinct cancer that behaves differently and originates in different cells within the pancreas. Its prognosis and treatment are completely different. Neuroendocrine tumors are a perfect example of why it is important to move away from the the traditional way of identifying cancers by the organ where they originate. Instead, it is more accurate to identify the cancer by the type of cells. Correct classification leads not only to proper treatment as well as realistic expectations by patients and their loved ones. While Neuroendocrine cancers may originate in cells within the pancreas, they also can arise in other hormone-producing cells elsewhere in the body. They are found most commonly in the lung or gastrointestinal system but can originate in other hormone-producing cells. Neuroendocrine cancers are sometime also called carcinoid , GEP-NET (gastroenteropancreatic NET), and pancreatic NET (islet cell tumor, gastrinoma, glucagonoma, and insulinoma). (Source: www.carcinoid.org/2011/08/26/pancreatic-neuroendocrine-tumors-a-rare-cancer/ ) WHAT IS THE DIFFERENCE BETWEEN NEUROENDOCRINE CANCER AND “PANCREATIC CANCER”? Aretha Franklin did not have pancreatic cancer. She died of advanced neuroendocrine cancer that originated in the pancreas. What is Pancreatic Cancer? Pancreatic adenocarcinoma is a cancer of the exocrine pancreas and is often referred to as “pancreatic cancer” or “pancreatic adenocarcinoma.” These comprise approximately 95% of all cancers that originate in the pancreas. What is Pancreatic Neuroendocrine Cancer? Pancreatic neuroendocrine tumors (PNET) is a cancer that originates in the endocrine cells of the pancreas. Tumors that originate in the endocrine cells are referred to as “pancreatic neuroendocrine tumors” or “pancreatic islet cell tumors.” PNET make up approximately 3-5% of cancers that originate within the pancreas. As stated above, neuroendocrine cancers affect cells throughout the body that secrete hormones most commonly in the gastrointestinal system (stomach, small intestine, large intestine, rectum), the lung, pancreas, or other parts of the body. It commonly spreads to the liver, lymph nodes, and the bones. (Source: https://netrf.org/pancreatic-neuroendocrine-cancer-vs-pancreatic-cancer/ ) IS NET CURABLE? Unfortunately, no. While early detection and intervention improve overall survival, there is no cure. Therefore, proper surveillance with appropriate labs and imaging as well as follow-up with a NET specialist is important. WHY DOES THIS DISTINCTION BETWEEN PANCREATIC NEUROENDOCRINE TUMOR AND PANCREATIC CANCER MATTER? It makes a big difference for research funding! While organizations such as PANCAN are devoted to pancreatic cancer research, NET Research Foundation invests specifically in NET research. NET Research Foundation is dedicated to finding treatments and cures on behalf of the approximately 170,000 people in the US with neuroendocrine tumors. It makes a difference for those affected by NET because it creates better understanding of the disease. News articles stating incorrect information about pancreatic cancer stir up more fear and anxiety for those battling NET. Accurate information fosters hope. HOW CAN WE SHOW R-E-S-P-E-C-T? (WHAT CAN I DO? ) The mission of LACNETS is to expand awareness and educate people about neuroendocrine cancer. If you read or hear incorrect information about NET, contact the news agency, publication, journalist, reporter, or editor to give constructive and respectful feedback. Some news services provide the ability to comment on news stories. Or respond via email or Twitter. (There are some useful links below that you can send.) Share accurate information about NET with your friends, family, and communities. Share your own story. Personal stories are powerful. HERE ARE CREDIBLE SOURCES WITH ACCURATE INFORMATION ABOUT NEUROENDOCRINE CANCER: What is the difference between neuroendocrine cancer and “pancreatic cancer?" Pancreatic Neuroendocrine Cancer vs Pancreatic Cancer, NETRF, published November 7, 2018 Pancreatic Neuroendocrine Tumors: A Rare Cancer, CCF, August 26, 2011 NET survivor Mitchell Berger has written an excellent NPR editorial explaining the difference between pancreatic neuroendocrine tumors and pancreatic cancer and calling for greater education and understanding about neuroendocrine tumors. Click here to read the article, " With a Spotlight on Jobs, Time to Talk About Cancer " (published August 25, 2011). General information about Neuroendocrine Tumor: American Society of Clinical Oncology’s Cancer.NET’s Guide to Neuroendocrine Tumors Canadian Neuroendocrine Tumor Society (CNETS)'s NET Facts International Neuroendocrine Cancer Alliance (INCA)'s NET Info Packs (available in 10 languages) Neuroendocrine Tumor Research Foundation (NETRF)’s Neuroendocrine Cancer Guide Image credit: MICHAEL OCHS ARCHIVES/GETTY IMAGE Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

As a patient , would you like to have better communication with your doctor? Would you like to maximize the time spent in your appointment? For healthcare providers , would you like to have all of your neuroendocrine cancer patients’ vitals in one document? Would you like to improve your clinic time with the patient to focus on patient needs? What is NET VITALS? LACNETS created NET VITALS as a quick snapshot of the most important questions for patients and healthcare professionals to know about neuroendocrine cancer. NET VITALS is a 20-question tool designed to highlight the vitals of NET cancer, all in one document. This allows the physician and patient to more easily communicate with all of the basics in one place. Think of NET VITALS as your NET passport. NET VITALS is a downloadable form which can be printed and filled out or completed as a PDF on a computer. It helps with record-keeping and prompts for scan image disks and reports. LACNETS thanks Dr. Dan Li at City of Hope for being our Medical Advisor on NET VITALS. Our goal is that NET VITALS will help patients and providers by empowering patients and improving patient-provider communication. Newly diagnosed? Are you newly diagnosed and want to learn the most important ‘vitals’ about your neuroendocrine cancer? NET VITALS is a guide to biomarkers, terminology and most common procedures and treatments. In just 20 questions, the patient and their family can learn about what the ‘vitals’ are in neuroendocrine cancer. It is not expected that the patient will be familiar with all of these terms, or know all of the answers. NET VITALS provides a working document for the patient to understand key vocabulary about their disease and a way to keep track of their status. Living with NETS? NET VITALS helps the patient keep current on their disease status and more easily communicate with their physician. NET VITALS can be particularly helpful when seeing a new doctor as part of the multi-disciplinary team or seeking a 2nd opinion. It’s a shortcut to communicate the patient’s disease status in a ‘snapshot’ and all in one place. NET VITALS history From Lisa Yen, NP, NBC-HWC: I remember quite vividly how overwhelmed I felt when my husband was abruptly and traumatically diagnosed with neuroendocrine tumor. Not only were we dealing with the emotional impact of the news, we were overwhelmed with the amount of information we needed to learn about this rare disease. Navigating the NET journey involves much learning as well as seeking the opinion of NET experts. In February 2018, Giovanna and I had the opportunity to work with many NET experts as part of the Healing NET summit. One of the main topics was patient - provider communication. It was from those discussion that Giovanna and I first asked the question, “What can we do to become better patients?” As we brainstormed with Dr. Dan Li, the concept of a “NET VITALS” worksheet was born. We imagined that patients could fill out a worksheet with the most important (aka “vital”) information that a NET expert would need to know about their disease. This worksheet would then serve two purposes: (1) The patient would become more familiar with their own disease through the process of filling out the worksheet. (2) The NET expert would have a concise document with the most important information about the person’s disease (i.e. “vitals” as in “vital signs”). The hope was that this would minimize issues with patients coming to see the experts with incomplete information as well as increase the patient’s knowledge and confidence before the appointment. The result would be a more efficient appointment with the NET expert with more time spent discussing the treatment plan. While this document may feel daunting, the intent is not for it to be filled out easily nor all at one time. Take a few breaths. Break it into chunks. Do a bit at a time. It is understandable that through the process of filling it out, you will have to go and dig through your records. You will discover words that you may not know and need to look them up through the resource links. You will leave some areas blank to discuss further with your doctor. In April 2018, LACNETS first introduced the NET VITALS tool in a LACNETS workshop. Its first official use was the LACNETS Annual Patient Education Conference on May 19, 2018. It continues to be a work in progress. Our hope is to help both patient and providers with this tool that will empower patients and improve patient-provider communication. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Escrito por Aimee Powell - 23 de agosto de 2021 (This blog post is also available in English, found here .) Cuando a mi hermano le diagnosticaron un tumor del cuerpo carotídeo en 2005, nos sentimos como si hubiéramos esquivado colectivamente una bala. Nos dijeron que la masa dura en su cuello (que temíamos que pudiera ser cancerosa) era benigna, y la única preocupación era el daño causado a sus cuerdas vocales durante la cirugía, inevitable debido al tamaño y la ubicación del tumor. Años más tarde, se encontraron tumores similares en el cuello y el abdomen de mi madre, pero la conexión entre sus antecedentes médicos no fue obvia hasta que a ella le dio un ataque cardíaco causado por la masa cerca de su glándula suprarrenal y recibieron un diagnóstico ominoso: feocromocitoma. "LA GRAN MÍMICA" Los feocromocitomas (feo) y los paragangliomas (para) son tumores neuroendocrinos raros que se forman principalmente a lo largo del sistema nervioso simpático. Los feocromocitomas se encuentran en la capa interna de la glándula suprarrenal llamada médula suprarrenal y los paragangliomas se forman cerca de ciertos vasos sanguíneos y nervios fuera de la glándula suprarrenal (también llamados feocromocitomas extra-adrenales). Aproximadamente el 80-85% de estos tumores son feocromocitomas y el 15-20% son paragangliomas. Los paragangliomas se encuentran con mayor frecuencia en la cabeza, el cuello, el torso y el abdomen y, al igual que otros tumores neuroendocrinos, pueden ser funcionales (secretores de hormonas) o no funcionales. Aunque los feos son conocidos por las grandes cantidades de hormonas suprarrenales que pueden producir, cualquier paraganglioma, en particular los que se encuentran en el tronco del cuerpo, puede volverse funcional, liberando ráfagas potencialmente mortales de epinefrina o norepinefrina. Cuando son funcionales, el diagnóstico se ve obstaculizado por el hecho de que los síntomas que causan pueden explicarse fácilmente por otras condiciones de salud más comunes. Estos síntomas incluyen: Dolor de cabeza Mareos Palpitaciones / latidos cardíacos rápidos Hipertensión (presión arterial alta) Sudoración Enrojecimiento Ansiedad Un sentimiento de condena. TODOS EN LA FAMILIA Aunque se describe en la literatura médica desde el siglo XIX, los feo / para sólo recientemente han comenzado a perder parte del misterio y la mitología que los rodea. Frases como “Regla de los 10”, el “10% de tumor” o “Uno y listo” han quedado relegadas al pasado. Las investigaciones sobre feo/ para ha proporcionado a médicos y pacientes información nueva y muy necesaria que, a su vez, ha tenido un efecto profundo en el diagnóstico y tratamiento de estos tumores. Algunos de los hallazgos más importantes se centran en la heredabilidad, o la medida en que una enfermedad es atribuible a factores hereditarios. Durante mucho tiempo se pensó que se heredaba en solo el diez por ciento de los casos, pero actualmente se hace referencia a feo / para como "el tumor más hereditario en los seres humanos". Si bien eso puede sonar un poco aterrador, nuestra familia encontró que la identificación de nuestra mutación / síndrome fue extrañamente empoderadora, lo que nos permitió (y a nuestro equipo de atención médica) luchar contra un enemigo que conocíamos, en lugar de un enemigo misterioso e impredecible. Aquellos diagnosticados con feo / para deben saber que: Aproximadamente el 40% de los feos / paras surgen debido a mutaciones genéticas heredadas; este número aumenta a más del 50% entre los paragangliomas que se encuentran en la cabeza y el cuello Hasta la fecha, aproximadamente 20 mutaciones genéticas, asociadas con una docena de síndromes genéticos, están implicadas en la formación de feo / para, incluyendo: Síndrome de neoplasia endocrina múltiple tipo 2 tipos A y B (MEN2A y MEN2B) Síndrome de Von Hippel Lindau Neurofibromatosis tipo 1 Síndromes de paraganglioma familiar 1-5 Tríada de Carney (paraganglioma / tumor del estroma gastrointestinal (GIST) y condroma pulmonar Carney-Stratakis Dyad (paraganglioma y tumor del estroma gastrointestinal) Leiomiomatosis hereditaria y cáncer de células renales (HLRCC) Debido a la alta tasa de herencia, el riesgo de recurrencia y la asociación sindrómica con otros cánceres, las pautas actuales recomiendan que todos los pacientes diagnosticados con feo / para sean remitidos a un asesor genético y se les realice un seguimiento anual durante al menos diez años después del diagnóstico. RARO, PERO NO SOLO A medida que la comunidad global de guerreros de feo / para ha crecido a lo largo de los años, se han formado grupos de apoyo para ayudar a los pacientes feo / para, sus familias y cuidadores. Además de proporcionar una gran cantidad de recursos sobre el feo /para y los síndromes relacionados, ofrecen ayuda para encontrar un médico, brindan apoyo entre colegas a través de reuniones remotas, patrocinan conferencias y otros eventos para los pacientes y sus familias, y brindan educación y recursos para proveedores de atención médica. Un diagnóstico poco común, especialmente uno asociado con tumores / cáncer, puede ser abrumador y un poco aislante. Si le han diagnosticado feo / para, hay personas en todo el mundo esperando para ayudarlo a navegar esta nueva parte de su vida. Lo siguiente representa una lista parcial de recursos para pacientes con feo / para. Para obtener una lista más completa, visite la página de Recursos the Pheo Para Project Resources page . Pheo Para Alliance Pheo Para Project VHL Alliance AMEND PHEiPAS Obtener más información sobre la Semana de apoyo sobre Pheo Para aquí . ¡Ayude a promover la conciencia entre los proveedores de atención médica participando en el Desafío de seis meses para cambiar el mundo Six Month Challenge to Change the World ! VIDEO: “FEOCROMACITOMAS Y PARAGANGLIOMAS” HAGA CLIC AQUÍ PARA OBTENER MÁS RECURSOS EN ESPAÑOL. MEET AIMEE POWELL Aimee Powell's involvement with the NET cancer community has its roots in her work as a caregiver for family members diagnosed with pheochromocytoma and paraganglioma. She has worked in an administrative capacity with nonprofits since 2005, and as a professional communicator for over twenty-five years. After her brother's death from malignant paraganglioma, she dedicated herself to raising awareness of para/pheo, and to assisting patients with these rare tumors. Aimee is the founder of the Pheo Para Project, past Executive Director of the Pheo Para Alliance, and currently sits on the board of directors for the SDH-Deficient Cancer Research Advocates. Aimee is also a LACNETS NETCONNECT mentor. She lives in the Greater Los Angeles area.

We all have bad days. Some days are especially bad. Getting out of bed feels like a chore. Favorite foods are unappealing. Activities that usually bring joy instead fail to bring their usual spark. There’s a dark cloud that just won’t go away. Sometimes these days stretch out to weeks or even months. Dark seasons are not unusual. Living with cancer is emotional. It’s normal to experience feelings of sadness or depression. It might stir up such feelings for the very first time, or it might uncover or worsen depression that was already present. Sadness normally comes and goes. Depression, on the other hand is more constant and problematic. Clinical depression is when someone experiences five or more of the following symptoms every day for more than two weeks, if the symptoms are severe enough to interfere with day-to-day activities. SYMPTOMS OF DEPRESSION : Sad or “empty” mood almost every day for most of the day Loss of interest or pleasure in activities that were once enjoyed Eating problems (loss of appetite or overeating), including weight loss or gain Sleep changes (can’t sleep, early waking, or oversleeping) Tiredness or less energy almost every day Other people notice that you’re restless or “slowed down” almost every day Feelings of guilt, worthlessness, and helplessness Trouble concentrating, remembering, or making decisions Thoughts of death or suicide, or attempts at suicide Wide mood swings from depression to periods of agitation and high energy Although NET patients typically have a better prognosis than other types of cancer, the emotional toll of living with this chronic condition for many years sometimes leads to feelings of despair. Physical symptoms from carcinoid syndrome, interventions, or treatments might also trigger depression. On the other hand, depression may not be related to treatment, prognosis, or pain. It's possible to lose hope just by living with a medical illness for a long time. When there’s a lingering cloud of depression, it’s hard to see the light. Loss of hope can lead to despair and depression, and untreated depression might spiral out of control. Depression doesn’t discriminate. Even fame, fortune, or religion doesn’t guarantee hope. Celebrities aren’t exempt from this struggle that, untreated, sometimes leads to a tragic end. The suicides of comedian Robin Williams, fashion designer Kate Spade, and celebrity chef Anthony Bourdain shocked our world. We were also saddened to learn that popular SoCal megachurch pastor and mental health advocate Jarrid Wilson took his own life. September is National Suicide Prevention Month . This topic is often not spoken about. Quite frankly, it’s hard to talk about. But suicide is not the way to escape your emotional pain. You might have fleeting thoughts of suicide as a way to cope with feeling overwhelmed, stuck, or lost, but if you have persistent thoughts of harming yourself or are making plans to do so, tell someone right now .* It’s important to recognize and get help! Intervening and treating depression early can make all the difference. Living with cancer is a struggle with much loss. There may be loss of meaning, purpose, respect, dignity, body image, and relationships. Grief naturally leads to depression. In INCA’s 2016 global survey , 60% of the nearly 2,000 NET patients surveyed worldwide reported a negative impact of NET on their emotional health. Forty-eight percent reported a negative impact on the emotional health of those closest to them. It is not surprising that the 1973-2014 SEER data shows that those living with cancer have a higher risk of suicide than the general population. Untreated depression and unmanaged feelings of emotional distress can lead to despairing thoughts. However, interventions to alleviate suffering, improve connectedness, and maintain safety can diffuse this. Seeking help for yourself or someone you know can save a life! Watch & Warn : Below are some possible warning signs in someone who may be at risk for suicide, especially if the behavior is new, worse, or seems related to a painful event, loss, or change. If you or someone you know shows any of these signs, seek help by contacting National Suicide Prevention Hotline online, or call 1-800-273-TALK (8255). Talking about wanting to hurt themselves or end their lives Looking for a way to kill themselves, like searching online or buying a weapon Talking about feeling hopeless or having no reason to live Talking about feeling trapped or in unbearable pain Talking about being a burden to others Increasing the use of alcohol or drugs Acting anxious or agitated, or behaving recklessly Withdrawing or isolating themselves Showing rage or talking about seeking revenge Sleeping too little or too much Extreme mood swings Ask & Listen: You can help! [Click here to read an excellent NPR article about reaching out to help loved ones who are at risk.] By reaching out to ask and listen, you can break someone's isolation and build connection. Connectedness and community help to counter struggles with depression and suicidal thoughts. Ask for help! If you or someone you know is struggling with feelings of depression, despair, and/or distress, ask for help. You are not alone. Seek help from a mental health professional or your cancer team. American Cancer Society gives practical tips on what cancer patients and caregivers can do about depression. If you are concerned and want immediate help, contact the National Suicide Prevention Hotline online, or call 1-800-273-TALK (8255). If your loved one has made an attempt, call 911 immediately. LACNETS has written past blogs about coping and resilience: Making Friends with Change What Sparks Joy Marathon Training: Part 1: Understanding the Race Part 2: Strategy Part 3: Recovery BREATHE Don’t be afraid to ask if someone is having thoughts of wanting to hurt themselves. Research shows people who are having thoughts of suicide feel relief when someone asks after them in a caring way. Findings suggest acknowledging and talking about suicide may reduce rather than increase thoughts. Listen without judgment and with empathy. Don’t act shocked. This will create distance between you. Don’t debate whether thoughts or feelings are right or wrong, good or bad. Don’t lecture on the value of life. Allow and accept expressions of feelings. Offer hope that alternatives are available, but do not offer over-simplified reassurance. Connectedness helps! Join a support group! LACNETS offers weekly and monthly virtual support groups for patients and caregivers. Learn more here. Click here for a directory of NET support groups. Click here for a directory of online support and discussion groups. Social support has been identified by the Centers for Disease Control and Prevention (CDC) as a protective factor in relation to suicidal thoughts and behavior. Starting a conversation, providing support, and seeking help can save lives! Click here for more tips and resources. Take action! Never keep a secret if someone tells you about a plan to hurt themselves. Become available. Find ways to show interest and support. Protect the person by removing means such as weapons or pills. Get help from people or agencies specializing in crisis intervention and suicide prevention. *This article is not intended to address the controversial topic of physician assisted death (previously known as physician assisted suicide) or medical aid in dying. Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

(This blog post is also available in Spanish, found here . ) When my brother was diagnosed with a carotid body tumor in 2005, we felt as though we had collectively dodged a bullet. We were told the hard mass in his neck which we feared could be cancerous was benign, and the only lasting concern was the damage done to his vocal cords during surgery—unavoidable due to the tumor’s size and location. Years later, similar tumors were found in my mother’s neck and abdomen, yet the connection between their medical histories wasn’t obvious until she had a heart attack caused by a mass near her adrenal gland and received an ominous diagnosis: pheochromocytoma. “The Great Mimic” Pheochromocytomas (pheo, pheos, or PCC) and paragangliomas (para, paras, or PGL) are rare neuroendocrine tumors which form primarily along the sympathetic nervous system. Approximately 80-85% of these tumors are pheochromocytomas, and 15-20% are paragangliomas. Paras (also called extra-adrenal pheochromocytomas) form near certain blood vessels and nerves outside the adrenal gland and are most often found in the head, neck, and abdomen. Like other neuroendocrine tumors, they can be functional (hormone-secreting) or non-functional. Pheochromocytomas are found in the inner layer of the adrenal gland (referred to as the adrenal medulla). Though pheos are notorious for the large amounts of adrenal hormones they can produce, any paraganglioma – particularly those found in the trunk of the body – can become functional, releasing potentially life-threatening bursts of epinephrine or norepinephrine. When they are functional, diagnosis is hampered by the fact that the symptoms they cause can easily be explained by other, more common, health conditions. These symptoms include: Headache Dizziness Palpitations/rapid heartbeat Hypertension (high blood pressure) Sweating Flushing Anxiety A feeling of impending doom. All in the Family Though described in medical literature since the 1800s, pheo/para have only recently begun to lose some of the mystery and mythology which surround them. Phrases like “Rule of 10s,” the “10% Tumor” or “One and done” have been relegated to the past. A growing body of research into pheo/para has provided doctors and patients with new and badly-needed information which has, in turn, had a profound effect on the diagnosis and management of these tumors. Some of the most important findings center around heritability, or the extent to which a disease is attributable to inherited factors. Long thought to be inherited in only ten percent of cases, pheo/para is currently referred to as “the most heritable tumor in humans.” While that might sound a little scary, our family found the identification of our mutation/syndrome to be oddly empowering --- enabling us (and our healthcare team) to fight an enemy we knew, instead of a mysterious and unpredictable foe. Those diagnosed with pheo/para should be aware that Roughly 40% of pheos/paras arise due to inherited genetic mutations; this number increases to greater than 50% among paragangliomas which are found in the head and neck To date, roughly 20 genetic mutations, associated with a dozen genetic syndromes, are implicated in the formation of pheo/para. These syndromes include: Multiple Endocrine Neoplasia type 2 syndrome types A and B (MEN2A and MEN2B) Von Hippel Lindau Syndrome Neurofibromatosis type 1 Familial Paraganglioma Syndromes 1-5 Carney Triad Carney-Stratakis Dyad Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC). Due to the high rate of inheritance, risk of recurrence, and association with other cancers, current guidelines advise that all patients diagnosed with pheo/para be referred to a genetic counselor and be followed yearly for at least ten years after diagnosis. Rare, but Not Alone As the global community of pheo/para warriors has grown over the years, advocacy groups have formed to help support them, their families, and caregivers. In addition to providing a wealth of resources on pheo/para and related syndromes, they offer help in finding a doctor, provide peer-to-peer support via remote meetings, sponsor conferences and other events for patients and their families, and provide education and resources for healthcare providers. A rare diagnosis, especially one associated with tumors/cancer, can be overwhelming and a little isolating. If you’ve been diagnosed with pheo/para, there are people around the world waiting to help you navigate this journey. The following is a partial list of pheo/para patient resources. For a more complete list, please visit the Pheo Para Project Resources page . Pheo Para Project Pheo Para Alliance VHL Alliance AMEND PHEiPAS Learn more about Pheo Para Awareness Week by clicking here. Help promote awareness among healthcare providers by participating in the Six Month Challenge to Change the World ! MEET AIMEE POWELL Aimee Powell's involvement with the NET cancer community has its roots in her work as a caregiver for family members diagnosed with pheochromocytoma and paraganglioma. She has worked in an administrative capacity with nonprofits since 2005, and as a professional communicator for over twenty-five years. After her brother's death from malignant paraganglioma, she dedicated herself to raising awareness of para/pheo, and to assisting patients with these rare tumors. Aimee is the founder of the Pheo Para Project, past Executive Director of the Pheo Para Alliance, and currently sits on the board of directors for the SDH-Deficient Cancer Research Advocates. Aimee is also a LACNETS NETCONNECT mentor. She lives in the Greater Los Angeles area.

You may have heard the buzz around clinical trials. Perhaps you’ve heard presentations on clinical trials. Or you may have heard talk of specific clinical trials. You may know of someone with a different type of cancer who tried a clinical trial as a “last resort.” Contrary to popular opinion, clinical trials may be considered at any time during your journey. Options range from first-line treatments for someone newly diagnosed to those who have already had multiple treatments. There are currently many clinical trials open for NET patients. This article explains why someone with NET may consider participating in a clinical trial. What are Clinical Trials? Clinical trials test the safety and efficacy of a treatment and strategies. They evaluate what works and doesn’t work. Clinical trials test to ensure a new treatment is safe and effective before it is brought to market and used in clinical practice. Clinical trials may also provide information about how drugs compare to each other. Clinical trials are conducted in a series of steps called “phases.” Each phase has a different purpose and helps researchers answer different questions. Phase 1: Researchers test a drug or treatment in a small group of people (20-80) for the first time. The purpose is to study the drug or treatment to learn about safety, side effects, and the maximum tolerated dose. Phase 2: The new drug or treatment is given to a larger group of people (100-300) to determine its effectiveness and to further study its safety. Phase 3: The new drug or treatment is given to large groups of people (1,000-3,000) to confirm its effectiveness, monitor side effects, and compare it with standard or similar treatments for the drug to be used safely. Phase 4: After a drug is approved by the FDA and made available to the public, researchers track its safety in the general population, seeking more information about a drug or treatment’s benefits and optimal use. For more on clinical trials, read this blogpost or watch this webinar . 5 Reasons to Participate in Clinical Trials: Clinical trials help the NET community. You have the opportunity not only help to yourself, but also to help the entire community. If successful, clinical trials help advance treatment options for others. You can help bring new treatments to market so they are available to all. Clinical trials can lead to important breakthroughs and discoveries. You can be part of shaping the future. You have the opportunity to contribute to moving the field of medicine into the future. (We all love moving the field of medicine into the future!) Clinical trials are an opportunity to advocate. Your participation in clinical trials is a form of advocacy. Participating in clinical trials is especially important in rare diseases where there may be limited research and limited treatment options. Clinical trial enrollment shows that patients are interested and willing to participate. Clinical trials must have inclusivity and diversity. It is important to include people from all backgrounds including race, gender, and age to give a better understanding of how treatments affect different people. This helps reduce biases, promote health equity, and produce more innovative science. Clinical trials may help you.* Clinical trials may give you access to new and promising treatments or combinations to see if they will work better than the standard of care. Depending on the phase and type of trial, you may receive the study treatment or the current standard of care. When you enroll in a clinical trial, you may also have extra medical attention from the research team with frequent check-ups and monitoring as part of your treatment. *The hope of a new or promising treatment often attracts people to clinical trials. While patients often seek clinical trials for their own personal benefit, it is important to clarify the difference between clinical care and clinical research: The primary aim of clinical care is to benefit the patient. The primary aim of clinical research is to gain new knowledge. The patient may or may not benefit. The benefit may be for future patients and for the NET community as a whole. Clinical trials drive medical advances. Clinical trial participation is essential to help us find answers and new treatments for NETs. In order for a randomized trial to go forward, each arm of the trial must be balanced, or have “equipoise,” meaning that there is a state of genuine uncertainty regarding the benefits or disadvantages of either arm of the trial. It would be unethical for a trial to not have equipoise. All clinical trials regardless of phase must be reviewed by an Institutional Review Board (IRB) to ensure that those that are entering clinical trials are protected. To read more about IRBs, please refer to the FDA description of IRBs and the Protection of Human Subjects in Clinical Trials . For randomized phase 2 or 3 trials, patients sometimes wonder if they can drop out of the trial if they are randomized into the control (standard of care, non-experimental) arm. To do so would waste costly clinical trial resources and could delay or halt the trial from completion. Without randomized clinical trials, new treatments could not come to market. So, while there is hope that the clinical trial may benefit the patient, the bigger reason to participate in the trial is to offer hope to the whole NET community. This is because clinical trials offer opportunities to help researchers find better treatments for others in the future. Clinical trials drive medical advances. Clinical trial participation is essential to help us find answers and new treatments for NETs. Consider how you might help the NET community by participating in a clinical trial. WATCH: NET patient Mary shares why she participated in a clinical trial Watch “Clinical Trials” featuring medical oncologist Dr. Daneng Li of City of Hope Watch “What’s New with NETs?" featuring medical oncologist Dr. Pamela Kunz of Yale Cancer Institute *Special thanks to Dr. Jaydi Del Rivero, Dr. Andrew Hendifar, Dr. Dan Li, and Josh Mailman for their contributions to this blogpost. *This blog post is for informational use only. LACNETS encourages you to discuss your individual needs and options with your medical team. Reference: NIH Clinical Research Trials and You Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

Our Executive Director, Kavya Velagapudi, has been working with LACNETS since 2015. Following the passing of LACNETS’ late founder and executive director, Giovanna Joyce Imbesi, Kavya stepped into the executive director role to help continue the LACNETS vision of supporting NET patients and their loved ones. Though Kavya isn't in the spotlight (i.e. visible in webinars and weekly support groups), she is our fearless leader. We asked Kavya a few questions to help our community get to know her, as well as her vision for LACNETS. Read the full interview below. HOW AND WHEN DID YOU FIRST BECOME INVOLVED WITH LACNETS? In 2015, Giovanna Joyce Imbesi, the late LACNETS founder, contacted me requesting support in writing a grant proposal. Anyone who met Giovanna knows it’s impossible not to admire and love her. Within a few months, we secured LACNETS’ first grant award. HOW HAS YOUR ROLE WITH LACNETS EVOLVED OVER THE YEARS? Giovanna and I continued to work over the years securing grants and donations to support the growing LACNETS programs. In 2017, Giovanna invited me to join the LACNETS Board. Between 2017 and 2019, I served as the Interim Executive Director while Giovanna focused on her health. When Giovanna succumbed to her disease in November 2019, I reluctantly took over as Interim Administrator since I was most familiar with the day-to-day operations and fundraising of LACNETS. What began as an interim role became permanent in 2021 when the Board and staff of LACNETS appointed me as the Executive Director of LACNETS. My work continues to bring me closer to incredible people like Giovanna whose vision is to change the world. WHAT EXPERIENCE DO YOU BRING TO LACNETS AND THE NET COMMUNITY? I’m an independent fundraising consultant and a grant writer with fifteen years of diverse experience generating revenue and resources for nonprofit organizations. I have a Bachelor’s in Psychology and a Masters in Social Welfare with a concentration in Non-Profit Administration & Policy Advocacy. Prior to focusing on administration and fundraising roles in nonprofits, I was a counselor at a domestic violence shelter and a homeless shelter. My previous roles include serving as the Western Region Director of Starlight Children’s Foundation in Los Angeles, and as the Development Director of the International Museum of Women, now part of the Global Fund for Women, in San Francisco. This experience helped me gain a unique blend of clinical, fundraising, and management skills. In 2014, I launched Honu Fundraising to work independently as a fundraising consultant, and a grant writer. Launching Honu Fundraising is the best professional decision I’ve made. My work continues to bring me closer to incredible people like Giovanna whose vision is to change the world. WHAT IS YOUR FAVORITE PART ABOUT BEING ON THE LACNETS TEAM? Our LACNETS team reminds me of Margaret Mead’s quote: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” LACNETS is a small but mighty team. In November 2019, we were overwhelmed by Giovanna’s passing. LACNETS had no succession plan. It was hard to imagine LACNETS without Giovanna. Over the next few months, the current Board and staff came together to continue Giovanna’s work and vision. Nearly three years later, LACNETS is thriving! We reach ten times more patients and caregivers than three years ago. We continue to expand and add new programs to meet unmet needs in the NET community. This success is not possible without the commitment and expertise of people who serve on the GeneratePossibility.org/LACNETS Board and staff. WHAT IS YOUR VISION FOR LACNETS? My vision is to grow LACNETS to become a global resource center for NET patients and caregivers. We are well on our way to achieving this vision.

Kelli Edwards with her Husband A year ago, I wrote a post for the LACNETS blog entitled Cancer Thriver . At the time, I felt like a thriver, enjoying the break from Cancerland my treatment afforded. I was one of the first patients at Cedars-Sinai Medical Center to receive Lutathera PRRT, which gifted me with four progression-free years. Every six months, my husband and I skipped out of Cedars waving our “Get Out of Jail Free” card. I say “our” because whatever happens to me, happens to him. Seven months ago in March 2022, the dreaded “P” word haunted my MRI report: progression . “Irregular mesentery mass has mildly increased in size.” I knew this was inevitable, but it still felt like a gut punch. We decided no need for medical intervention yet, but the writing was on the wall. Over the next six months, a mild sense of dread set in. On most days, I was able to argue it away. Eventually, the mental gymnastics wore me down. It wasn’t the kind of traumatic grief I experienced when I was first diagnosed. This was more like a low-grade foggy depression that came and went. I was able to function and even enjoy myself at times. My mind often attributed everyday aches and pains to something more ominous. Gas pains were tumors. A pulled muscle was scar tissue forming. Stomach aches were pancreatitis. I started a “pain log” documenting the times, duration, and intensity of my discomforts. The log gave me peace of mind because I would have documentation for the doctor if needed. Also, the act of writing it down felt like it gave it validity. Nothing ever materialized into anything of significance, just little gnat-like thoughts buzzing in the background. Kelli Edwards with her Daughter Family events were also tainted by the fog. There’s a photo where I’m posing with my youngest daughter on the day of her “short coat” ceremony when she was initiated into a physician assistant program. I smile proudly, my arm wrapped around my high-achieving twenty-six-year-old. One part of me says, “You made it to see Aubree embark on her career!” Another part argues, “But what about her wedding day? Or the birth of her first child?” This bittersweet ebb and flow carried me back and forth between joy and grief. While most teachers live for summer vacations, this year was different. The calendar was inching towards September scans and without the distraction of work, I had more time to ruminate. My husband, middle daughter, and I decided we needed a vacation. We booked a trip to Wisconsin to visit family, including my ninety-six-year-old grandma. Grandma Elly is a character! She squealed with delight when my daughter and I surprised her at her little white house. A quintessential grandma house, it’s remained the same for as long as I can remember—a pink bathroom that smells like Dove soap, blue shag carpet, and end tables overflowing with family photos. Grandma fluttered around her white wig askew, dramatizing the story behind each photo. Suddenly, she stopped and grabbed my wrists with her translucent hands. Her mint green eyes sparkled and filled with tears as she said in a deep, wise voice, “Oh Kelli, I prayed and I prayed. You told me all you wanted was to see your three little kids grow up.” Then she pointed to my beautiful twenty-nine-year-old daughter, with matching green eyes, and squealed, “And now, look!” She grabbed both of us around the neck for a long hug. Kelli Edward’s Grandmother in conversation with her Husband After letting go, her face lit up with insight. “Now, Kelli, we’re gonna pray for grandkids. You need to see your grandkids.” Then she pointed to my daughter Cassidy. Cassidy’s face contorted, “No way, grandma! I’m not even married.” That’s when Grandma pretended not to hear. For the next ten minutes, she chased Cassidy trying to pray for her, while Cassidy ran away to dodge the prayers, yelling in protest. She knew how powerful Grandma’s prayers were. Kelli Celebrating with her Family Finally, after a lot of loud explaining and gesturing, we convinced Grandma to pray for my son Blake and his wife Norma because they had been married for a year and wanted a baby. Grandma finally understood, and the three of us stood in a circle and held hands. Grandma Elly’s voice turned serious as she prayed that I would have grandchildren and get to see them grow up. Her words caused me to weep. Is it okay to hope? Is it okay to dream of a narrative that isn’t really logically or scientifically probable? I have to go back to my favorite book Man’s Search for Meaning by Viktor Frankl. Here is his distilled truth: Even in the most intense suffering, we have a choice to make meaning. Meaning is derived from the hope of a future. No matter what the odds, all have the right to dream of a future in which we are fulfilled and carrying out our destiny. If Viktor Frankl can survive the loss of his wife and bear witness to unthinkable atrocities to write a book that would change the trajectory of psychiatry, then I can choose to imagine a future in which I have grandchildren and get to see them grow up. When we returned home, my husband and I started counseling. I remembered how much it had helped when I was initially diagnosed. My husband is sixty-one and retired. I’m fifty-seven and still have a few more years to enjoy my profession. We are at that stage when we need to set up a trust and discuss our long-term financial plans. Yet, whenever we try, one or both of us chokes up. It’s unbearable for us to plan any future beyond an impending scan. Our counselor teared up when we told her how we live in six-month increments. She was shocked at how we even functioned. At this, we cried—not tears of sadness as much as tears of validation. We hadn’t acknowledged the toll this burden had taken and how it colored every decision in our lives. As the weeks progressed, we shared how we didn’t feel comfortable sharing our deepest fears with each other. I didn’t want to burden my husband and he didn’t want to say anything that may make me give up. With this out in the open, we were able to formally give each other permission to share our dark feelings when they come. I tried it first. We were in San Francisco, our version of Disneyland, when I noticed a pain in my side. It reminded me of the dull ache I had prior to my PRRT. Normally, I would have kept this concealed because I wouldn’t want to put a damper on our vacation and, more importantly, I wouldn’t want to worry my husband. Nevertheless, I thought I’d give it a try. My husband was able to validate my worries without getting sucked in himself. It turns out that our low spots tend to happen at different times. So, one of us is usually strong enough to play the role of supporter. Instead of hitting the town that night, we hung out in our room and watched Dream House Renovation on Netflix. Slowly, the pain dissipated and we were able to enjoy the rest of our stay. A few weeks ago, the six-month scan timeline reared its ugly head. This time, many of the tumors had increased. “Four years is a very good run for PRRT,” my oncologist said. I thought to myself, “not nearly long enough.” My husband and I cried together on and off for days. I numbed my torturing thoughts with nostalgic movies like Saturday Night Fever and its pathetic sequel, Stayin’ Alive. My husband and daughter brought me bowls of soup followed by bigger bowls of cookie dough ice cream. I prayed, “God, how in the heck are you going to get me out of this one?” Then I remembered my LACNETS community and reached out to Lisa Yen (Director of Programs & Outreach). I realized that while I’m a patient mentor, as part of the NETCONNECT team, I’m still a patient myself. Sometimes I need mentoring. After networking with the worldwide NET community, Lisa had advice and encouragement and some promising options I didn’t know about. My other LACNETS friends reached out to me, as well, with encouragement and validation. In moments of fear and questioning, I know they will be there for me. Photo by Lisa Yen, Iceland So far, my grandma’s prayers still seem to hold their power. My son and daughter-in-law are having a baby—my granddaughter. I will get to hold her and tell her how much I love her when she arrives in March. There are no guarantees about how long I will get to be in her life, but while I’m on this earth, I’ll breathe all my wisdom and love into her. I rest in the knowledge that she will always be surrounded by a huge family that will adore her. If you Google the word “thrive,” an image of a green plant wrestling its way through a crack in the concrete comes up. Even when there are times I don’t feel like I’m thriving, I’m still going to make the decision to be a cancer thriver…no matter what . Written by Kelli Devan Edwards , NET Patient, NETCONNECT Mentor