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In honor of National Family Caregiver Month, a caregiver shares what it means to be a caregiver to her husband who is living with NET. "Someone you love is ill and is in need It’s a journey of mostly necessity not choice It’s walking beside, behind and ahead and changing directions frequently It’s keeping a smile while hiding a tear Holding your fear in check Giving patience when frustration rises Being a receiver of their frustration Finding ways to direct my anger and theirs Taking on chores that were once theirs or shared Advocating for them even when they don’t think they need an advocate Making plans, changing plans, and changing plans Having difficult conversations about the future, including end-of-life Finding the balance between gentle reminders and nagging Looking for the bright side in all of this and rejoicing when you find the light even if only for a brief time Reminding yourself this is not the journey they chose to be on either Watching your loved one be so vulnerable Realizing there will be times when we are sharing a view from the mountain top, but somedays we will be in the valley and other days we might be coasting down the calm waters. Somedays our views will not be the same and that will be okay too I do not have to do this alone It’s knowing when the caregiving ends, I will have lost the one I love" Written by Beth Voyles A NET Caregiver & NETCONNECT Mentor

An Overview of PRRT Peptide Receptor Radionuclide Therapy Original post April 2, 2019; Updated 12/17/2022 By now, you’ve probably heard of PRRT. Maybe your doctor recommended it. Or maybe you’ve heard another patient mention it on a discussion board. You may have heard it’s a type of radiation. Or you may have read that it’s a promising new treatment available to NET patients. Right now, these four letters – P-R-R-T– are very powerful letters. They are packed with information and meaning. PRRT is perhaps one of the hottest topics in the NET community, sparking much interest and discussion. This article is intended to give a general overview by answering some frequently asked questions about PRRT. Note: NET patients in the United States may see these terms used interchangeably: PRRT, Lutetium 177 Dotatate, often abbreviated as Lu-177 and Lutathera®, the brand name for the FDA approved drug. What is Theranostics? Theranostics = thera peutics + diag nostics Theranostics is a combination of the words thera peutics and diag nostics . PRRT is a type of theranostics that uses the same targeting molecule for diagnostic imaging followed by treatment. With NET, the diagnostic phase in the U.S. is the Ga-68 DOTATATE scan (NETSPOT®) or Cu-64 DOTATATE scan (DETECTNET®), and the therapeutic phase is the Lu-177 (Lutathera®). Because they are paired in this way, Ga-68 or Cu-64 DOTATATE and Lu-177 are sometimes referred to as “theranostic twins.” Since you can’t have one without the other, a discussion about PRRT must also include the Ga-68 DOTATATE or Cu-64 DOTATATE scan. Note: Radioisotopes such as Ga-68 and Lu-177 are used not only for NET but also other types of cancer. In this article, we address their use for NET. What is the Gallium-68 or Copper-64 DOTATATE scan (SSTR-imaging or SSTR-PET)? The Gallium-68 (Ga68) DOTATATE scan and the Copper-64 (Cu64) DOTATATE scan (or simply known as DOTATATE scan) in a class of special PET scans that are paired with a radionuclide-labeled somatostatin analogue to detect somatostatin receptors on NET cells. With a DOTATATE scan, DOTATATE binds to the tumor cells and Gallium-68 (Ga-68) or Copper-64 (Cu-64) is taken into the cell. The scan “lights up” showing that somatostatin receptors are present. This is why you may also see it referred to as SSTR-imaging or SSTR-PET. The DOTATATE PET is done simultaneously with either a CT or MRI scan. The PET scan highlights the tumor and the CT or MRI scan shows a detailed view of the body. The two scans are fused together, resulting in clear, high-resolution images. The Ga-68 DOTATATE scan, also known as Netspot® was FDA approved in 2016 and the Cu-64 DOTATATE scan, also known as (DETECTNET®) was approved in 2020. DOTATATE scans are now considered the gold standard molecular imaging study, replacing the octreotide scan, to show the presence of somatostatin receptors . It does not measure tumor size. It is important to remember that the DOTATATE scan does not replace “conventional imaging” scans, MRI or CT. The DOTATATE scan is a functional imaging study that shows if tumors have somatostatin receptors. An MRI or CT scan is a structural imaging study that measures the size of tumors. One is not superior to the other; the scans show different types of information. DOTATATE scans are not used routinely to see whether tumors are progressing. CT or MRI are used for “surveillance,” to detect the presence of tumor(s) and measure their growth. Practically speaking, this means that you will have fewer scans than MRI and CT scans. Because the DOTATATE scan detects the presence of somatostatin receptors, it can reveal tumors that are not yet large enough to be seen on a CT or MRI scan. In other words, you might see tumors on your DOTATATE scan that you did not see on your CT or MRI scan. This does not necessarily mean that there has been a progression since your last CT or MRI scan. Remember, these are two different types of scans. You must compare one DOTATATE scan to another DOTATATE scan (or one MRI scan to another MRI scan) to determine disease progression. Tumor progression on DOTATATE scans would appear as more spots lighting up or more areas that have spots. Tumor progression on conventional imaging, MRI or CT, would appear as increased tumor size, which the radiologist measures using “RECIST” criteria . Both scans give you important information in different ways. Not all areas that “light up” (areas of uptake) on the DOTATATE scan are tumors. There are also “false positives” and areas of physiological uptake. Physiological uptake means it is normal for these areas to light up; these areas are not cancer cells. Areas of inflammation which are not cancerous may also show uptake which is not cancerous. It is important that these scans are read by nuclear medicine doctors who know how to read them properly. If there is any doubt, it is reasonable to request a copy of the scans on CD to be sent to an expert on your medical team for another opinion. If you have this scan done at a facility other than where your NET expert is, he/she will likely want to review the scans. The DOTATATE scan (or octreotide scan) must show uptake, indicating the presence of receptors on the tumors, in order for a patient to be a candidate for PRRT treatment. For more information on Ga-68 DOTATATE scans: Refer to the 2019 NANETS/SNMMI Procedure Standard for Somatostatin Receptor Based Peptide Receptor Radionuclide Therapy with 177Lu-Dotatate Here is the Appropriate Use Criteria by SNMMI Click here for the Guide to NETSPOT. Read NETRF’s article “A Better Way to Image NETs?” What is PRRT? PRRT (peptide receptor radionuclide therapy) is a type of treatment that uses targeted radiation to kill specific cancer cells. PRRT is a form of nuclear medicine. This means that it must be given by doctors who specialize in nuclear medicine. They are specially trained to use radioactive materials to diagnose and/or treat medical conditions. These nuclear medicine doctors are the ones who read and interpret DOTATATE scans, as well as other nuclear medicine scans such as PET-FDG scans, bone scans, and MIBG scans. They are typically the doctors who determine if you are a candidate for PRRT, and they oversee the actual treatment. PRRT is a method of delivering a radiolabeled somatostatin analog that targets specific receptors called somatostatin receptors (SSTR) . You may notice it referred to as SSTR-therapy in medical literature. Somatostatin receptors are expressed by many NET tumors. Somatostatin receptors are the same receptors that somatostatin analogues (SSA), lanreotide or octreotide, bind to. An analogue drug is one that has a structure similar to something else. With NETs, the analogue drug (lanreotide, octreotide, Ga-68, Cu-64, or Lu-177) mimics the naturally occurring hormone, somatostatin. Think of it like a copy of a key (i.e. SSA, Ga-68, Cu-64, and Lu-177) that fits in a lock (somatostatin receptor). These are also the same receptors that light up on the DOTATATE scan. The DOTATATE scan must show uptake, indicating the presence of receptors on the tumors, in order for the patient to be a candidate for PRRT treatment. Your pathology report from biopsy and/or surgery may also mention if your tumors have somatostatin receptors. They are often abbreviated “SSTR” on the report. You may see SSTR subtypes on your pathology report on your report listed such as SSTR-1, SSTR-2, SSTR-3, SSTR-4, and SSTR-5. If you have somatostatin receptors, PRRT can reach these receptors regardless of the tumor location or grade . Remember that with NET, the grade (based on Ki67) of the tumor is often more important than its stage. PRRT works by using a targeting molecule called a peptide (a group of amino acids) that binds to somatostatin receptors on the surface of the tumor cells. Using a chelator, the peptide is joined to a radionucleotide, specifically Lutetium-177, otherwise known as Lu-177. This combination of peptide plus radionucleotide is called a radiopeptide. Currently, PRRT using Lu-177 is the first FDA-approved PRRT in the United States. PRRT using other types of radionucleotides are being developed and may be available through clinical trials and in Europe. PRRT is likened to a “Trojan horse” packed with cancer-killing radiation that is snuck into enemy territory and causes destruction by killing the tumor cells from the inside. It is given intravenously into the bloodstream and travels to the cells that have somatostatin receptors. It binds to these cells and delivers the radiation into the tumor cells. What should I expect? Click the above image for the complete infographic by Carcinoid Cancer Foundation which describes how PRRT works, who might benefit from it, how it is administered, etc. PRRT is not a magic bullet. It is not intended to be curative . The goal of PRRT treatment is to increase survival, relieve symptoms, and improve quality of life. The NETTER-1 study measured progression-free survival (PFS) as its endpoint. This means the goal is to stop tumor growth. In other words, stable disease is good news! Remember that each individual is unique. Each person responds differently to PRRT. PRRT is one of many available treatments. It is typically not used as first-line therapy. The first line therapy is somatostatin analogues. Surgery should also be considered. PRRT may be used if tumors are considered inoperable and if there continues to be progression on somatostatin analogues. For more on who and when PRRT should be used, refer to the 2020 NANETS/SNMMI Consensus Statement on Patient Selection and Appropriate Use of 177Lu-DOTATATE Peptide Receptor Radionuclide Therapy . The FDA approval of PRRT with Lutathera® is not the end but the beginning. We hope to see many more advances in PRRT such as other types of PRRT and combination treatments. Read part two of this two-part blog post series, “PRRT (Part Two).” Resources: Check out the LACNETS PRRT videos Click here for more PRRT resources 2019 NANETS/SNMMI Procedure Standard for Somatostatin Receptor Based Peptide Receptor Radionuclide Therapy with 177Lu-Dotatate 2020 NANETS/SNMMI Consensus Statement on Patient Selection and Appropriate Use of 177Lu-DOTATATE Peptide Receptor Radionuclide Therapy First PRRT Approved by U.S. Food and Drug Administration , NETRF Summary of PRRT , NETRF Improving PRRT , NETRF Written by Lisa Yen, NP, NBC-HWC Director of Programs & Outreach, LACNETS

The Learn Advocate Connect Neuroendocrine Tumor Society (LACNETS) and Carcinoid Cancer Foundation (CCF) are excited to announce a partnership to provide a Support Line for those affected by neuroendocrine tumor (NET). The Support Line provides guidance, resources, and referrals to NET patients or their loved ones. The new partnership allows both organizations to leverage each other’s complementary programs and expertise to help NET patients and caregivers around the world. As one of the most recognized NET-related organizations in the US, CCF receives many inquiries for support from patients and caregivers every year. LACNETS, with its close ties to the patient and healthcare community, is poised to provide the best support possible. This partnership formalizes LACNETS’ Support Line, which will now provide support to those contacting CCF in addition to direct inquiries. The Support Line is a comprehensive addition to the current range of NET educational programs, advocacy tools, and support groups provided by LACNETS. To receive support, patients or caregivers can fill out a questionnaire available at https://www.LACNETS.org/supportline . The answers help LACNETS direct the patient or caregiver to the most relevant informational resources, introduce them to others with a similar diagnosis or treatment plan, or NET experts specializing in their area of inquiry. For more information, visit https://www.LACNETS.org/supportline .

First, let’s review some basic concepts… Theranostics is an approach that combines diagnosis and treatment by targeting the same receptors on tumor cells to detect them (diagnosis) or destroy them (therapy). Theranostics = Thera peutics + diag nostics With NET, the diagnostic phase of theranostics is typically performed with the Ga-68 dotatate scan (NETSPOT®) or Cu-64 dotatate scan (Detectnet™). This means that the dotatate scan is done and must show uptake, and indicate the presence of somatostatin receptors on the tumors, in order for a patient to be a candidate for PRRT treatment. [Note: Ga-68 DOTATOC is also FDA-approved for imaging.] The therapeutic phase is PRRT. PRRT = P eptide R eceptor R adionuclide T herapy PRRT is a targeted therapy where radiation is delivered to the tumor cells. Currently, the only FDA-approved PRRT therapy for NET in the United States is Lu-177 dotatate (Lutathera®). For more on the basics of PRRT, read the LACNETS blog post, These Four Letters: PRRT Part 1 . Note: Radioisotopes such as Ga-68 and Lu-177 are used not only for NET but also for other types of cancer. In this article, we address their use for NET. Beta vs. Alpha Beta and alpha particles are forms of radiation currently being used to treat NET in the form of PRRT. For more on radiation basics, read the United States Nuclear Regulatory Commission’s Radiation Basics . Lu-177 dotatate or (Lutathera®) is a type of beta PRRT. Although Lutathera® is currently the only FDA-approved PRRT, the other types of PRRT, notably alpha PRRT, are under investigation. There are two alpha isotopes available through clinical trials: Actinium 225 or Ac-225 – The study is called “ACTION-1,” a phase 3 study sponsored by RayzeBio. For more information on eligibility criteria, trial locations, study details, etc., view this trial on ClinicalTrials.gov (NCT05477576) . Lead 212 or Pb-212 – The drug name is “AlphaMedix,” available through a clinical trial sponsored by Radiomedix and Orano Med. For more information on eligibility criteria, trial locations, study details, etc., view this trial on ClinicalTrials.gov (NCT05153772) . *Lu177 DOTATATE is the only FDA-approved treatment. **In the USA, available only in the clinical trial as of April 2023 Currently, there are different types of PRRT trials: PRRT naïve: Someone who has not had PRRT before Someone who has had PRRT before PRRT combination therapy: There are studies comparing Lu177 in combination with another drug, often used as a radiosensitizer, to enhance the effects of the radiation. [See these PRRT combination clinical trials.] Sequencing treatments: comparing one treatment, such as PRRT, to another treatment to evaluate the order in which they should be given For more on PRRT: View the LACNETS PRRT videos See more PRRT resources THANKS TO OUR SPONSORS

Many NET patients are on a somatostatin analog (SSA), also known as “the shot” in the patient community. The purpose of the shot is to stop the growth of the tumor or to manage symptoms of functional tumors. (Click here for the LACNETS podcast episode on this topic.) Currently, t here are two major SSAs on the market, which may be referred to by their brand names (e.g. Sandostatin© LAR) or generic names (e.g. octreotide), similar to the pain reliever brand name (Tylenol©) that may also be referred to by its generic name (acetaminophen). The following table lists these drugs by generic and brand names, and notes the manufacturer of each: While SSAs are common, the terms may be confusing, and some feel anxious or stressed about them (see this blog post ). When discussing being treated with an SSA, your doctor may allow you to choose which shot you would prefer to receive. There are some important — and significant — differences between them. This table notes some key differences patients have identified that might influence your choice: Note: These medications must be administered by a trained medical professional. Sandostatin© LAR Somatuline© Depot Needle length Longer needle — goes deeper into muscle ​Shorter needle — only goes into fat layer Preparation Complex mixing process at time of use ​Requires refrigeration and thawing/warming to room temperature for 30 minutes prior to injection Cheek position before inserting needle (both are always at 90° to skin surface) Pinch the cheek Spread the cheek out flat Administration time (how much time it takes to squeeze the plunger to empty the barrel) No time given however, the plunging time can be quick to avoid the medicine hardening in the syringe/needle 20+ seconds Administration video Sandostatin© LAR Video Somatuline© Depot Video Administration Comparison Oncology live video Oncology live video Administration instructions/graphics Preparation Administration Preparation & administration, see pg. 10-11 Short-acting “rescue shots” available to relieve carcinoid syndrome symptoms? Yes No General product patient page ​Sandostatin© LAR Website Somatuline© Depot Website Somatuline© Depot Patient Brochure ​Patient financial assistance (Note: there are exclusions for Medicare and other government programs) Novartis Patient Assistance IPSENCARES Mobile administration while away from your clinic or at home Sandostatin© Mobile Administration program IPSENCARES brochure — Home Health program Prescribing information with required FDA information and warnings Sandostatin© LAR prescribing information Somatuline© Depot prescribing information People have a wide variety of experiences with the shot; some say that it's not painful at all, but for others, it may be painful. Brainstorming ways to reduce the anxiety, stress, and pain associated with receiving SSA injections has been a frequent topic in our weekly virtual support group. The following suggestions have been made by patients and caregivers. If you are just starting treatment, consider asking your doctor to start you at a low dose and increase the dose each month instead of starting your first injection with the full dose. You may request ice 30 minutes before your injection to numb the target area. Target areas for each product are shown below: Sandostatin Sites: Somatuline Depot Sites: ​ ​ Sources: https://www.sandostatin.com/en/neuroendocrine-tumors/administration/injecting/ ; https://www.drugs.com/pro/somatuline-depot.html Alternate between left and right for each dose. Tip: LACNETS founder, Giovanna Joyce Imbesi shared this trick: use ROLE ( R ight = O dd months, L eft = E ven months). If reversed, RELO and LORE works just as well. And yes, there are some months where this falls apart like long months that have 2 shots during the 28-day cycle. Whatever your system is, the key is to keep track of which side is injected each month. Receiving the injection while lying down will keep the gluteus muscle relaxed. To keep it from tensing while receiving the injection in a standing position, place all your weight on the leg NOT receiving the injection. The time removed from the refrigerator can be verified yourself. The pharmacy or nurse may write the “Out Time” on the box, meaning the time it is taken out of the refrigerator. Ask questions of any new person before allowing them to administer your shot. A poorly administered shot can be costly and could add to discomfort during or after the injection. Worse yet, it may mean not receiving the full benefit of the medicine until the next dose (usually 28 days). Here are some questions to ask your nurse before receiving the shot: Have you given this before? Have you been trained on the process to prepare and administer this medication? Do you squeeze or pinch the cheek? Plunger time — how long? Can you point me to the location you’ll be inserting the needle? Note: You can feel to make sure there are no lumps from past shots. Gently draw their attention to the prescribing information if any items are missed. If your nurse fails more than once you might ask to talk with the charge nurse to request someone else. Somatuline© Depot syringes have a needle retraction mechanism. When the plunger is bottomed-out, make sure the nurse keeps downward pressure on the plunger, remove the syringe needle from you, and then relieve pressure on the plunger. Failure to do so will retract the needle and your skin into the syringe body, giving a huge (and unnecessary) skin pinch. Once you’ve received the injection, here are some Do’s, Don’ts, and things to watch out for: Make sure the nurse does not massage or rub the injection area after the injection. Afterwards, walk around for ~ 20 minutes. Heating or ice will help reduce any residual pain. Tip: Remember, Do NOT rub/massage the area. You may feel tired after the injection or experience other symptoms such as headache or change in bowel habits for several hours or days, even after taking the shot for many months. Tip: You may want to take changes of clothes/digestive aids, anti-diarrheal medicine, pain reliever, etc. to address these side-effects after discussing what is safest with your doctor. Travel: If you plan to travel during the time of your injection, talk to the drug company about having a home health nurse administer it at your hotel/other location, or coordinate with another facility to receive your injection at the location you will be visiting. Tip: When looking for another facility, you might start with your healthcare network. For more helpful tips after receiving The Shot, be sure to review the previous blog here, under the section “WHAT CAN I DO TO MAKE “THE SHOT” LESS PHYSICALLY, EMOTIONALLY, OR FINANCIALLY STRESSFUL?” This blog is for educational purposes only and does not constitute medical advice. It does not provide a medical professional’s opinion or advice nor is it an endorsement for particular treatments. You are advised to seek appropriate licensed medical/professional help and discuss your individual care and treatment plan with your medical team. The content in this blogpost is the opinion of the author and the information is neither provided by nor endorsed by pharmaceutical companies, including Ipsen or Novartis. Note: External website URLs are current at the time of initial posting of this blog. Some links may be unavailable outside of the United States. THANKS TO OUR SPOSNORS

Receiving scan or test results can be one of the most anxiety-inducing experiences anyone touched by cancer can experience. You know these results will either fill you with joy due to treatment success or propel you forward to the next path in care which can be accompanied by feelings of grief, fear, anger, etc. In today’s day and age, a new complex layer is added to the experience of getting these results. Nowadays, most healthcare facilities make test and scan results available for the patient to read prior to seeing his/her doctor. This post addresses the pros and cons of this process to help you answer the question, “Should I look at my scan results before seeing my doctor?” Remember that everyone is different in how they choose to process this information. “Scanxiety'' is an all-too-real feeling associated with cancer-related scans. Undergoing the scan and waiting for results and the doctor’s recommendations can produce a high degree of anxiety, also known as “scanxiety.” This post focuses on scans, but the same can be said for other test results. I’m the one connected to my mother’s patient portal. This means, at any hour of the day following her scans, I might get an email notifying me that test results are available on my mother’s portal. The email usually looks something like DONOTREPLY@.org . Seeing this is enough to get my heart pumping and my sweat glands working and knowing it can come at any minute keeps me on edge for a prolonged period of time. Then comes the decision: Do we look at the results, or do we wait? Let’s break down the pros and cons. CONS: 1) Misinterpreting the information presented. At the end of the day, no matter how knowledgeable we think we are about cancer, there’s always the possibility of misinterpreting what we’re reading. While I like to refer to the “impressions” section of scan reports to sum up what is happening, sometimes it’s not clear-cut. We must remember that most of us are not medical professionals, so we might not be fully understanding the scenario, which brings me to my next point… 2) Blowing things out of proportion. It’s easy to blow scan results out of proportion without a medical professional walking you through them. For example, when I first read my mother’s scans that said “innumerable” lesions in the liver, my mind couldn’t even comprehend what was going on. For a week, I sat in worry, only to learn that less than 25% of her liver was compromised, and not a single doctor was worried. At other times, we might read that there has been growth, but without context of what is enough growth (1mm? 5mm? 1cm?) to warrant a change in treatment. Sometimes test results are just too complex for us to understand. 3) Adding stress and anxiety. While keeping the two previous points in mind, reading news that might not be what we wanted can send us into a spiral. I’ve been there. After reading of progression, my body goes into panic mode - loss of appetite, headaches, and numerous Google searches. It’s important to read scans with the awareness that your mind can take you to some scary places. 4) Not having immediate access to the support you might need. The last point I’d like to touch on is the lack of access to a medical professional the second after you read a scan. On one of my mother’s first scans, I learned that her splenic vein was blocked completely by the tumor on her pancreas. I wanted to call a doctor immediately and schedule her for surgery at that very moment. But, given that it was a holiday weekend, I knew I’d be waiting at least four days. The best and most immediate feedback is always available at appointments. PROS: 1) Allowing yourself the possibility of alleviating stress, pending positive results. I always like to err on the side of good news. Often, when scan results come in, I think, “I should look now so we can celebrate stability and alleviate this stress!” While we’ve been blessed with many stable scan results, you just never know what’s waiting for you in the impressions. But, there have been many times when I’ve been grateful to read of stable scans, before going into a holiday weekend, a vacation, etc. It’s certainly risky, but it’s been worth the pay-off when we’ve been blessed with stability. 2) Giving yourself time to process the information. When my mother was first diagnosed, it felt as if textbooks of information were being thrown at us, and often we’d leave an appointment forgetting what was said and wishing we had asked many more questions. But this is often the reality of cancer appointments. We’ve learned how to combat this along the way but tackling this issue will be different for everyone. If scans show changes, looking at them before the appointment allows you time to process the information at home, experience your feelings and be ready to focus at the appointment. However, it’s important to find a support system, whether it be with another patient/caregiver, a family member, a therapist, or whatever works for you, because processing such information can take a toll and is not for everyone when a doctor isn’t present to explain things. 3) Allowing you to formulate questions for your appointment. Once we’ve had time to process the information, we then get to work on formulating a list of questions to bring to our appointment. Typically, we get the results 5-7 days before actually seeing the doctor. I use that time to read articles, post on Facebook groups, and talk to other people - and then I jot down every question that comes to mind. This makes me feel like I have some control over the situation and to know that I’ll have asked everything on my mind to make me comfortable with whatever step is next. 4) Ending the anticipation. Sometimes there might be merit to just ripping the Band-Aid off and finding out what’s going on. The wait and anticipation can be just as bad as the reality of reading whatever is waiting in the scan impressions. This varies from person to person, as everyone copes differently with this process. I’ve learned that I’m the type of caregiver that must read the results as soon as they come in. There have been multiple occasions when I’ve created excess worry due to looking at the reports and there have been times when I’ve relaxed and celebrated after reading the reports. Each time is different, and each time I experience new emotions. I’ve yet to find the perfect balance, but I’ve learned some things along the way: 1) Learn your healthcare facility’s schedule for releasing scan results. This can mentally prepare you for when to expect results so you aren’t needlessly worrying every time you refresh your email’s inbox. 2) Schedule your scans closer to your appointment. Some facilities require at least a week between scans and the appointments, but others will see you the same day. This is a question to ask your care team. 3) Know your comfort levels. It might take time to do this but find out what works and what doesn’t work for you. 4) Set limitations. Maybe this means only allowing yourself to look at the results the day before or the morning of the appointment; that way, you have enough time to process the information and formulate questions, but not extra time for worrying. 5) Consider your daily quality of life. Don’t let scanxiety consume your days. (However, I type this knowing that, even after three years, I haven’t mastered this yet.) So… to check or not to check scan results? Ultimately, there is no right or wrong answer. Some people prefer to see the scan results prior to the appointment, and others would rather wait. But, if you’re like me, you live in an area of back-and-forth as to what is the “right” answer. After nearly three years of this, with some scans that have been amazing and others that have not been as favorable, my mother and I have made it through each one. But remember there’s plenty of support out there to help you through whatever you’re going through. You are not alone. This blog is for educational purposes only and does not constitute medical advice. It does not provide a medical professional’s opinion or advice nor is it an endorsement for particular treatments. You are advised to seek appropriate licensed medical/professional help and discuss your individual care and treatment plan with your medical team. The content in this blogpost is the opinion of the author and the information is neither provided by nor endorsed by pharmaceutical companies. THANKS TO OUR SPONSORS

In "Against the Tide: The Mary Donlevy Story," Mary shares her NET journey as part of the 'Stories of Hope' video series, a joint effort by LACNETS and the Carcinoid Cancer Foundation . ABOUT MARY Mary is a NET Patient, a NETCONNECT Mentor & LACNETS Board Member. Mary was diagnosed in 2005 with a pancreatic NET. She had the whipple procedure after her original diagnosis. She is a mother to four children, two of whom are identical twins born after her diagnosis with NET. ABOUT NETCONNECT NETCONNECT is a program connecting NET patients and caregivers with NET mentors for support. To connect with mentors like Mary or to become a mentor, please email us at info@LACNETS.org. MORE VIDEOS Watch Mary share her experience in a clinical trial. ​ Watch Mary also share about "scan-xiety," the common anxiety patients sometimes have when undergoing scans here. ​ Watch Mary share her story of living with pancreatic neuroendocrine tumor. Learn Advocate Connect Neuroendocrine Tumor Society (LACNETS) provides a community of support and education for neuroendocrine tumor (or neuroendocrine cancer or NET) patients and caregivers. For more information or to learn about upcoming events, visit LACNETS.org.

On Oct 22, 2023, Dr. Jennifer Chan from Dana Farber Cancer Institute shared the CABINET trial data that showed cabozantinib (CABOMETYX®) helped those with advanced pancreatic NET and extrapancreatic NET (NET outside the pancreas). The results suggest that cabozantinib may be an effective option to treat NET patients, even those who have already tried other therapies. Exelixis will discuss the results with the FDA. The NET patient community can be hopeful that there will likely be another FDA-approved oral treatment available in the near future. Click here to read the detailed results of the CABINET trial here: Business Wire - "Detailed Results from Phase 3 CABINET Pivotal Trial Evaluating Cabozantinib in Advanced Neuroendocrine Tumors Presented at ESMO 2023 " OncLive - "Cabozantinib Confers PFS Benefit in Previously Treated Advanced Neuroendocrine Tumors" Watch this exclusive video interview with Dr. Jennifer Chan at ESMO - European Society for Medical Oncology 2023 in Madrid, Spain. Visit our Clinical Trials Guide for more information about the CABINET Randomized, Double-Blinded Phase III Study of Cabozantinib Versus Placebo in Patients with Advanced NETs After Progression on Prior Therapy >>

LACNETS hosted over 100 NET patients and caregivers in Santa Monica on Nov 11th to celebrate NET Cancer Day . Everyone appreciated having the chance to meet NET experts, sponsors and other patients and caregivers in person. NET patients Beth, Burt, Denny and Mary inspired many with their stories. The event culminated in a celebration of NET Cancer Day with a piano concert by Tom Bajoras, a composer/pianist who has been living with NET since 2015. He shared stories of hope, along with original piano pieces written during his NET journey. You can hear his music here. LACNETS Board President Donna Gavin presented the 2023 Giovanna Imbesi Above and Beyond Award to Tom Bajoras. Each year, t he award is given to an individual for outstanding dedication to NET patient advocacy with the LACNETS community. Tom contributes by opening up his studio for the LACNETS Podcasts . He has recorded the intro and outro, written music for the podcast and edited all the episodes. Tom shares his music generously with the NET community. Here are some comments we have received from attendees so far: “Even though I feel through our weekly support group I have learned so much, there is always so much more to learn and hearing the speakers gives me hope for the future as they emphasize how much is changing daily in possible treatments.” “THANK YOU for all you do for the NET community. You are all Angels giving so much of your time to help all of us.” “Unexpectedly delightful!” “It was the first symposium I attended, and I felt it was…perfect!! So glad I had this change! Thank you all! The beauty of NET is getting to know people like you all!” “Helpful from A to Z…every second! Loved it! Professional! Inspirational!” "I've been to countless similar events, but this was truly life-changing and transformative." We are grateful to our speakers: Martin Auerbach, MD Jaydira Del Rivero, MD Alexandra Gangi, MD Linda (Lindy) Gardner, MSN, RN, VA-BC Andrew Hendifar, MD Daneng Li, MD The speaker presentations are available here. THANKS TO OUR SPONSORS

It is with heavy hearts we share that our beloved NETCONNECT Mentor and dear friend of LACNETS, Kelli Devan Edwards, passed away on December 5, 2023.  Kelli inspired us by choosing to thrive with cancer and offering her support to many also living with NET. She was brave enough to do so while acknowledging the grief, challenges, and dread that come with living with cancer. Kelli’s journey with neuroendocrine cancer began in 2003 when she was diagnosed with midgut NET and liver metastases. With the guidance of her NET experts, Kelli managed her disease as a chronic condition with a range of treatments including surgery, SSAs, oral therapies, liver directed therapies and PRRT. She attributed her health to innovative healthcare, a nurturing community of friends and family, and a deep spirituality. Despite her diagnosis, Kelli lived richly and fully for 20 years with NET. Kelli was a loving mother and wife, a gifted teacher and a writer. We hope her words and the journey she shared so openly will continue to provide solace and inspiration. “Like the captain of my own celestial vessel, I’ve learned to sail on the winds of the Four C’s: Cope, Create, Commune & Curate. ” Kelli shared her journey to help others with NET in blog posts and videos. Blog Posts "Cancer Thriver" by Kelli Edwards, Oct 2021 "Cancer Thriver: The Next Chapter" by Kelli Edwards, Oct 2022 "Grief's Grip" by Kelli Edwards Kelli shared how her world initially crumbled after her diagnosis and how she has since learned not just to survive, but also to thrive . Kelli and the LACNETS founder Giovanna Joyce Imbesi shared a special bond and we dedicate Giovanna’s “ Give Me Peace, ” song to Kelli and her beautiful family, friends, and this community. “We each navigate the sea of uncertainty in our own unique vessels drawn by whatever light we see flickering on the horizon. I hope my journey anchors you, despite the presence of turbulent news. And hopefully someday you will be an anchor for those who follow you. We are so much more than our physical body, and we will thrive NO. MATTER. WHAT.” ~ Kelli Edwards

by Shane Peters, NET Caregiver, NETCONNECT Mentor Shane also wrote the blog post, “ Scan Results: To Check or Not to Check . ” “Make sure to see a NET specialist.” This is often the advice we hear in the neuroendocrine cancer community. But how  do you go about doing this? This article tackles an important topic: getting your scans to a specialist—an important part of the process of seeing a NET expert.  Just about all patients get diagnosed locally, sometimes hours away from the closest NET specialist. So how do you get an initial appointment with a specialist? You’ll need to send over your pathology report, lab results, and most importantly, your  scan images . In this article, we share some tips on getting your scans so that you can have a productive appointment with your NET expert.  What scans?  MRI, CT, and PET scans (which can be both FDG and DOTATATE PET scans.) Why?  In order to give a thorough assessment and guidance, your NET expert will want to see the actual images stored on a compact disc (CD) and not just the written report or summary created by the radiologist. At some institutions, the actual images are also called the “electronic copy,” as opposed to the “paper copy” which is the written report. In this article, we call them “CDs” or “CD scans” or “CD copies.” Unfortunately, getting CD copies of your scan images can be a frustrating process, especially if you’re not aware of how the medical record release process works at your medical institution. It’s crucial to have physical CDs of the images (not just the written reports) because this is what a skilled oncologist or surgeon will refer to for the exact intricacies of your case. Since NET is quite a unique disease, the radiologist’s impressions in a scan report often do not provide enough information for important decision-making, notably when surgery is an option. This article covers how to get multiple copies of your CDs and also how you can efficiently send them to a specialist for a consultation or second opinion. We’ll explain the process of obtaining new scans as well as the process of getting older imaging. We’ll wrap up with how to get these scans to your specialist and provide some tips you can use moving forward.  Please keep in mind that every medical institution may have a different release of information process. Below is a generalized overview of a typical process.  Information To Gather and Forms To Complete Medical release form . Medical centers usually have a medical release form (sometimes referred to as a “release of information”) that must be completed before scans or medical records can be released to you or sent to another medical facility. We recommend completing one form for the NET specialist and one for yourself in order to save a copy of the information in your personal records.  Do note, it’s possible to authorize someone else to pick up or release records on your behalf.  These forms may have to be completed on a yearly basis or per request, but hopefully, they will be kept on file to expedite future requests. Your medical release/request form must be on file before the institution can release any information on your behalf. Addresses . You’ll need to get the mailing address for your specialist. This may not be the address you find on the hospital’s website. Ask the care team’s point of contact (which could be a patient navigator, intake coordinator, or new patient coordinator) for the exact address to send scans to and to whom they should be addressed. Don’t forget to include specific details such as a floor number and office number. Phone numbers. We recommend getting the following phone numbers: The doctor’s main office number. The medical records number (sometimes referred to as the “film library”). The radiology library number. (This might be the same as medical records, depending on the institution.) While requests usually can be placed over the phone, it’s worthwhile to have a contact person at the medical records or film library, so you can ask “Did you receive my request?” and other pertinent questions. Fax numbers . You’ll want to get fax numbers for the following: The office of the NET specialist the care team referred you to. The medical records or radiology library office you’re requesting the images from. This is where you’ll send requests to get scans to (see “getting prior scans” below). Email addresses . Find out if your local medical records/radiology library has an email address you can email your requests to directly. Since scans of release forms can be sent electronically, this is often easier than faxing. (And, let’s be honest, most of us don’t readily have access to a fax machine.) For your convenience, here is a form you can print out and use to make sure you’ve collected all this information. Keep the printed form in a folder or binder as an easy- access checklist in the future. Getting CD Copies of New Scans Fortunately, at most institutions, it is much easier to get copies of new or upcoming scans. First, before going to your scan appointment be sure you have the mailing addresses you want to send your scans to.  On the day of your scan, some institutions allow you to leave, that same day, with CDs of your scans in hand. Fill out the necessary paperwork and wait patiently after your scans for them to be processed and saved to a CD. Request two copies: one for your specialist and one for your own records. As a rule of thumb, you should always keep copies of your scans. Other institutions have you complete a form on the day of your scan and then send the scans to the requested institution, once they’ve been processed. This often allows the medical records department to receive the paperwork the next day, prepare the scans, and ship them out once the written summary report is finalized. It does make the process a bit easier, though the processing period is unknown. This is where having the phone number of the medical records/radiology library comes in handy to confirm completion and shipping. Getting Prior Scans If required, fill out a medical record release form  for the medical facility you’re requesting the scans from. On this form, you will include the information regarding where you’d like the scans sent to.  Contact the medical records/radiology library  with your request. They will likely have you complete a release form that can be faxed, emailed, or filled out in person. The form typically includes the following information: Patient name Patient date of birth Medical record number List of scans being requested, including the types of scans and the dates of the scans. The name and address of where the scans are being sent. Request two copies of your scans , one for you and one for the physician. Having an extra copy gives you the opportunity to mail them yourself, in case scans get lost somewhere in the process. This also ensures that you’re not giving away your only copy, as institutions do not generally return CDs.  Get a tracking number . If your hospital is mailing out the scans via FedEx, UPS, or USPS, request a tracking number. This number is useful for tracking where your scans are in transit and who signed for them at delivery. You can usually get this by calling the radiology library directly. Sending or Shipping Scans Learn the process of the medical institution where you receive your scans .  Will scans be sent out via priority mail or another carrier?  This will give you an idea of how long it will take for the CD to arrive at the intended medical location. What’s the average length of time to process the request?  (When will the CD be shipped after you submit your request?) Remember to take this into account when estimating how long it will take for the CD to arrive at its destination. You can then anticipate when to schedule your appointment with the doctor receiving the scan. Can you pick up scans in person?  It might be faster to go to the medical facility or film library to pick up the CDs and then mail them yourself. Some receiving institutions provide a UPS label or FedEx account to expedite the process of mailing the CDs yourself. What are the costs?  Most hospitals will not charge you for the cost of one CD but see if there is a fee for an additional CD. This is a good tip for getting medical records, as well. They might also charge a fee for processing or shipping. Learn the process of the receiving institution. What is their preferred method of delivery?  Some receiving institutions have a preference. Some even provide a UPS label or FedEx account so you can mail the CDs yourself to expedite the process.  Where should you send the CDs, and to whom should they be addressed to?  Confirm the address of the receiving person/team. Which scans do they need? Typically the receiving institutions also want prior scans to compare with the most recent scans.   Do they also need the written report(s)?  Some institutions want the written report or paper copy to be included with the images, while others do not require this because they can be found in Epic or other shared data platforms. Can you upload scans online?  Ask the receiving institution if they have a way to send the scans online. If there is a way to do this, and if you’re familiar with the process, you can upload the images yourself.  Hospitals might have two options: upload via MyChart or upload via the institution’s portal. Ask if they can provide step-by-step instructions for uploading scans.  This can be a complicated process, but once you’ve gotten used to it, it can be quite efficient. Unfortunately, if you do not have a CD drive, you won’t be able to upload the scans yourself. You’ll have to mail them.  After you have all this information, you’ll need to find out what your best option is: mailing your scans or uploading them online. Keep in mind that whichever method you choose, picking up the CDs on the same day as your scans may speed up the process. Takeaway Undoubtedly, this process can feel overwhelming, especially when navigating a cancer diagnosis. Remember that you’re not alone. Do not hesitate to reach out to your hospital’s medical record department or even your oncologist's office to ask for help. If you would like to talk to another patient or caregiver who has been through this process, feel free to contact LACNETS. We have a team of NETCONNECT mentors who would be happy to listen or share their experiences. After three and a half years, I’ve finally gotten the hang of the requisition and sending imaging process. But I’ve learned the easiest way to take care of this is the day of scans. We hope you find the method that works best for you!  This blog is for educational purposes only and does not constitute medical advice. It does not provide a medical professional’s opinion or advice, nor is it an endorsement of particular treatments. You are advised to seek appropriate licensed medical/professional help and discuss your individual care and treatment plan with your medical team. The content in this blogpost is the opinion of the author and the information is neither provided by nor endorsed by pharmaceutical companies. THANKS TO OUR SPONSORS

Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors  This application acceptance moves Cabozantinib (CABOMETYX®) an oral, targeted medication one step closer to adding another treatment tool to the toolbox for previously treated, metastatic, well or moderately differentiated neuroendocrine tumors for pancreatic NET and extra-pancreatic NETs (m eaning NETs outside of the pancreas including gastrointestinal and lung). sNDA is an application to allow a company to make changes to   a product that already has an approved  new drug application  (NDA). Exelixis will continue to work with the FDA as they review the application. The FDA assigned a  Prescription Drug User Fee Act   target action date of April 3, 2025. Application is based on results from the phase 3 CABINET pivotal trial, in which cabozantinib provided a statistically significant and clinically meaningful improvement in progression-free survival versus placebo.   ALAMEDA, Calif. — August 6, 2024  –  Exelixis, Inc.  (Nasdaq: EXEL) today announced that its supplemental New Drug Application (sNDA) for cabozantinib (CABOMETYX®) has been accepted in the U.S. for: 1) the treatment of adults with previously treated, locally advanced/unresectable or metastatic, well- or moderately differentiated pancreatic neuroendocrine tumors (pNET), and 2) the treatment of adults with previously treated, locally advanced/unresectable or metastatic, well- or moderately differentiated extra-pancreatic NET (epNET). The U.S. Food and Drug Administration (FDA) also granted  orphan drug designation   to cabozantinib for the treatment of pNET. The FDA assigned a standard review with a  Prescription Drug User Fee Act  target action date of April 3, 2025.  Read the Exelixis press release. Watch the LACNETS interview with Dr. Jennifer Chan explaining the CABINET trial data. This blog is for educational purposes only and does not constitute medical advice. It does not provide a medical professional’s opinion or advice, nor is it an endorsement of particular treatments. You are advised to seek appropriate licensed medical/professional help and discuss your individual care and treatment plan with your medical team. The content in this blogpost is the opinion of the author and the information is neither provided by nor endorsed by pharmaceutical companies.