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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

The NETTER-2 phase 3 trial results show Lutathera® may be offered as first-line treatment for newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs). When compared to long-acting octreotide, Lutathera® reduced the risk of disease progression or death by 72% in patients with somatostatin receptors.  “These positive results for Lutathera are practice-changing and offer new first-line treatment data for patients who have a significant unmet need. This study confirms the clinical benefit of first-line radioligand therapy (RLT) for newly diagnosed patients living with these types of advanced GEP-NETs. These findings should instill confidence among physicians in using Lutathera as a first-line treatment for patients with this life-threatening type of cancer.” — Dr. Simron Singh, NET expert, Sunnybrook Health Sciences Centre, Ontario, Canada.  Novartis Lutathera® significantly reduced risk of disease progression or death by 72% as first-line treatment for patients with advanced gastroenteropancreatic neuroendocrine tumors In the Phase III NETTER-2 trial, Lutathera plus octreotide LAR significantly extended median Progression Free Survival (PFS) to 22.8 months vs. 8.5 months with high-dose octreotide LAR in patients with newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs).  NETTER-2 is the first and only positive Phase III trial for a radioligand therapy (RLT) or PRRT in the first-line setting, demonstrating the potential of RLTs in earlier treatment lines. Novartis is investigating a broad portfolio of RLTs or PRRT in advanced cancers, in addition to GEP-NETs, including lung, prostate, breast, colon, glioblastoma and pancreatic cancers to continue reimagining medicine for patients. Read the full Novartis Press Release: https://www.novartis.com/news/media-releases/novartis-lutathera-significantly-reduced-risk-disease-progression-or-death-72-first-line-treatment-patients-advanced-gastroenteropancreatic-neuroendocrine-tumors

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.

On April 23, 2024, the Food and Drug Administration approved lutetium Lu 177 dotatate (Lutathera®, Advanced Accelerator Applications USA, Inc., a Novartis company) for pediatric patients 12 years and older with somatostatin receptor (SSTR)-positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors. Lutetium Lu 177 dotatate  received approval for this indication for adults in 2018. This represents the first FDA approval of a radioactive drug, or radiopharmaceutical, for pediatric patients 12 years of age and older with SSTR-positive GEP-NETs. Full prescribing information for Lutathera® will be posted  here . Read the complete FDA announcement here . Read the Novartis press release here . Thanks to the investigators and patients and families who participated in the  NETTER-P clinical trial  to make this approval possible!

Neuroendocrine cancer patients often have a variety of available treatment options. Since this cancer behaves differently from other types of cancers, it’s not universally treated with chemotherapy like other cancers. When chemotherapy is recommended, it may be a different type of chemotherapy than used with other cancers. Chemotherapy may be one of many possible treatments used for neuroendocrine cancer, including neuroendocrine tumor or NET and neuroendocrine carcinoma or NEC. (For more information about various treatments, check out the LACNETS video library   or LACNETS podcasts .) Once the decision has been made to move forward with chemotherapy, the concern is usually on quality of life and how to mitigate side effects. If you or your loved one is preparing for chemotherapy, you may have questions about how to prepare to prevent or address potential side effects. We’ve included some tips and tricks based on first-hand patient and caregiver experiences.   Note: Discuss your questions and concerns with your provider. This information should not substitute for or replace instructions given to you by your medical team. General Tips:   Eat a balanced diet of nutritious foods. This is not the time to start dieting! If you lose your appetite or struggle with weight loss, try eating small, frequent meals. Hydrate. Make sure you’re drinking plenty of water. Keep moving. Being physically active may help reduce side effects such as neuropathy. Get outside and walk on days when you are feeling well. Inform your medical team about all the medications, vitamins, and supplements you take, as some might interfere with chemotherapy. Communicate openly and honestly with your doctor. Tell your doctor right away about any side effects you are experiencing. Your doctor needs to know how you’re feeling to help you. There are things that can be done such as prescribing medications or adjusting the dose or frequency of the chemotherapy to make it more tolerable. It’s important that you be able to do the things you enjoy. Your quality of life matters! NET caregiver Lisa Yen’s “show and tell” of tips, tricks, and items she and her husband found to be helpful when dealing with chemotherapy: Useful items for undergoing chemotherapy:   For port access: Chemo port access shirt with buttons along the shoulders or a button down shirt that allows easy access to the port - here is an example Prescription EMLA (lidocaine and prilocaine) cream   to be placed over the port before accessing it   For photosensitivity: Sunscreen with at least 30 SPF Lip balm with SPF 30 – Aquaphor lip protectant + sunscreen Hat -   example Umbrella -   example   To prevent hand/foot syndrome: Shea butter Aquaphor healing ointment   For dry mouth: Biotene oral rinse mouthwash for dry mouth ACT dry mouth lozenges   For nausea + metallic taste: Herbal inhaler   Sea band acupressure wrist bands nausea relief   Lemon ginger lozenges “organic morning ease” by Traditional Medicinals - for nausea Peppermint lozenges “tummy drops” Nonmetal utensils such as bamboo For comfort: Aromatherapy Oil Diffuser Essential oils Seat belt pad Therapy mittens Worry stone such as this " One day at a time" rock   Blanket – example of a herpa throw blanket  or inspirational blanket Pillow – example of a “Rest” pillow Supplements & Medications: Electrolyte mix - SOS  or dripdrop  or pedialyte Vitamin D3 50 mcq / 2,000 IU  or  Vitamin D3 125 mcq /5,000 IU Imodium AD   Prescription anti-nausea meds: Ondansetron  (Zofran) 8mg, 1 tablet every 8 hours as needed for nausea or vomiting Prochlorperazine (Compazine) 10mg by mouth every 6 hours as needed for nausea or vomiting Olanzapine (Zyprexa) 2.5mg, take 2 pills at bedtime for nausea; this is an antipsychotic medication used to treat depression and bipolar in people older than 13. It is used off-label for chemotherapy-induced nausea and vomiting. Special thanks for Dusty who created most of this list. For more information on chemotherapy, listen to the LACNETS Podcast Episode 35 NEN Treatments: Focus on Chemotherapy with Dr. Pamela Kunz. 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

Dr. Jennifer Chan from Dana Farber Cancer Institute announces the updated findings On Sept 16, 2024, LACNETS interviewed incoming NANETS president, Dr. Jennifer Chan from Dana Farber Cancer Institute following her presentation on the updated, results of the CABINET trial at the medical and scientific meeting,  ESMO (the European Society for Medical Oncology)  Congress 2024 in Barcelona, Spain. The presentation was titled “ Cabozantinib Versus Placebo for Advanced Neuroendocrine Tumors (NET) after Progression on Prior Therapy (CABINET Trial/Alliance A021602): Updated Results Including Progression Free-Survival (PFS) by Blinded Independent Central Review (BICR) and Subgroup Analyses.”   Last year, LACNETS interviewed Dr. Jennifer Chan at the ESMO Congress 2023 in Madrid, Spain when she first shared t he initial CABINET trial data that showed cabozantinib (CABOMETYX®) helped those with advanced pancreatic NET and extrapancreatic NET (NET outside the pancreas). The results suggested that cabozantinib may be an effective option to treat NET patients, even those who have already tried other therapies. Watch the 2023 interview here . Watch our latest interview on Sept 16, 2024 with Dr. Jennifer Chan at   ESMO (the European Society for Medical Oncology)  Congress 2024 in Barcelona, Spain. (Read the complete transcript below.) Cabozantinib is an oral tyrosine kinase inhibitor. The data shows that cabozantinib effectively slowed the progression of neuroendocrine tumors across various primary sites, including pancreatic, extra-pancreatic (NETs outside the pancreas including GI and lung origin). The trial included patients with well-differentiated neuroendocrine tumors of grades 1, 2, and 3. The updated data focused on blinded, independent central review scans, safety profiles, and subgroup analyses. Dr. Chan emphasized the potential for Cabozantinib to offer a new treatment option, providing hope for both clinicians and patients. Read more in latest NEJM article released Sept 16, 2024: Phase 3 Trial of Cabozantinib to Treat Advanced Neuroendocrine Tumors. 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 >> TRANSCRIPT Lisa Yen   00:00 I'm Lisa yen. I'm the LACNETS Director of Programs and Outreach, and I'm here with Dr Jennifer Chan, here in Barcelona, Spain, at ESMO 2024. Dr Chan is a NET expert, medical oncologist from Dana Farber Cancer Institute in Boston, and the incoming NANETS president. Dr Chan, just discussed some exciting trial and so Dr Chan, I'd love to hear from you what you shared today at ESMO 2024.   Dr. Jennifer Chan   00:29 Thanks for having me with you. We presented the updated results of the CABINET trial. Last fall, we had focused on the initial results, and we were here now to present the final r esults. What we found was that Cabozantinib, which is an oral, what we call multi kinase inhibitor. These types of drugs, can work to inhibit the growth of blood vessels in the tumors and also can work to slow growth. But what we found was that Cabozantinib was able to effectively slow the progression, slow the growth of cancer. So we found this to be true for patients that had neuroendocrine tumors that may have started in a very wide range of primary sites. So we specifically looked at pancreas neuroendocrine tumors, and then also what we call extra-pancreatic neuroendocrine tumor. So this really includes neuroendocrine tumor tumors that start outside the pancreas. So most commonly it's in the GI tract. We also had about 20% of patients in the trial who had lung neuroendocrine tumor tumors. Some patients with unknown primary tumors. Some patients with kind of rarer sites, like the thymus and even other sites in addition to that. So it was, again, a very broad range of patients. And what we found was that in both the pancreas group as well as the extra-pancreas group, that this was an effective treatment. So it really, I think it can be considered an option, I hope, in the future, for a wide and a large number of patients.   Lisa Yen   00:42 Wow, a wide range of patients, including lung. That's really exciting since I know that that population sometimes feels a little left out because there's not a lot of options. Can you speak also to the different types of grades that it might be used for?   Dr. Jennifer Chan   02:15 Yeah. So all of these were what we call well-differentiated neuroendocrine tumors. But within well-differentiated, there's grade one, grade two, grade three. So grade one is the tumors that look under the microscope to be not quite as proliferative, not as much signal for growth. And then on the flip side is the high grade, the grade three, where there's more evidence of under the microscope proliferation. So we included all grades. Mostly, it was grade one and grade two. Grade two, probably of all the patients, was the highest category, but there also were patients with grade three disease, and as we looked at the data, we saw signals that cabozantinib should work even in all of the grades that we were including.   Lisa Yen   02:53 Yeah, so this trial closed last August, and you talked about this at ESMO last year in October in Madrid. So, why are we talking about it again? What is new and different that you're presenting and sharing with us?   Dr. Jennifer Chan   03:09 That's a great question. So we presented data that focused on what we call the primary endpoint. As we started the trial, we kind of had to find what we were going to be looking for in terms of how we measure growth and what kind of scans we were looking for. So this year, we were looking at a different set of scans, what we call these blinded, independent, central review scans, whereas at ESMO last year, we were looking at the scans that patients' doctors were looking at. So it was a second radiology set of images that we were looking at, the ones that when we designed the trial, we said, "these were going to be the primary ones to look at." So this was important for us to have the primary, what we call end point results. We also had more information about the safety and side effect profiles that patients were experiencing, and then some of these subgroup analyzes that I just talked about.   Lisa Yen   03:58 Yeah, I know you've dedicated quite a number of years, about a decade of your life to this trial and this work. What's important of all this data, what's it going to mean to patients?   Dr. Jennifer Chan   04:09 I think it means possibly new treatment option. I think again, that's what we started this trial to do, was to see if we could find a newer and a newer, effective treatment. So I think the data is quite compelling that this is potentially something that more patients might have as an option for the future. So it gives me a lot of hope as a clinician, that will be able to offer more treatment. And I hope also gives some hope to patients as well.   Lisa Yen   04:32 It gives me hope to as a caregiver. Thank you so much. And so what are what's your takeaway, or your hope for the future coming up?   Dr. Jennifer Chan   04:41 Yeah, I think we're still in the field, trying again to find even more treatments. We're trying to right now we are individualizing treatment. I think hopefully we also will have some studies that help us to understand how they compare, how these treatments compare to one another. And I think it's all just good in the long run to be able to have more options, to understand how to use these options. And I think it's, I guess the take home message also, as you hear about this, is to bring it back to your own oncologist. I think we want you to be able to understand the data and to understand, as you talk with your medical team about what that might mean for you.   Lisa Yen   05:15 Yeah, more hope. Deeper understanding and hopefully a better overall quality of life for all of us. Thank you so much for all you do. Thank you for joining us today.   Dr. Jennifer Chan   05:24 Thank you for having me.   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