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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.

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

LACNETS participated in INCA’s 12th annual Global NET Patient Advocate Summit in Segovia, Spain with 24 other Patient Advocacy organizations from 20 Countries around the globe.  The goal was to collaborate on spreading awareness and education of neuroendocrine cancer (neuroendocrine tumor or NETs), improving access to optimal treatments and care, advancing research and advocacy initiatives.  LACNETS attends the 12th INCA Global NET Patient Advocate Summit in Segovia, Spain on September 9-10th, 2024 In August 2022, LACNETS joined the International Neuroendocrine Cancer Alliance (INCA)  as its 32nd member. The International Neuroendocrine Cancer Alliance (INCA) is the global voice in support of patients with neuroendocrine cancer and genetic syndromes (GenNETs). INCA is an umbrella organization representing  37  patient advocacy and research groups from 29 countries around the world. LACNETS Founder Giovanna Imbesi was a past guest of INCA and dreamed of LACNETS joining INCA as a member organization to add to the global voice and reach. For the third consecutive year LACNETS attended the INCA Summit. Together with ENETS and NANETS leadership, over 30 representatives of INCA member organizations gathered to share best practices and  lessons learned. Through engaging discussions innovative ideas were formed. Attendees left inspired by the collective dedication and hopeful about the impact these concerted efforts may make on behalf of those living with neuroendocrine cancer. LACNETS shared their NET VITALS  tool as an example of how patients living with NET can connect with their healthcare providers to learn, share and communicate what is vital about their specific neuroendocrine cancer diagnosis.  INCA member organizations had the opportunity to share one project at the Summit to inspire collaboration and innovation in creating awareness, access, research and advocacy in regards to NET (or neuroendocrine neoplasm, NEN). Lisa Yen presented on NET VITALS during the member showcase.  Lisa Yen, LACNETS and Danielle Ralic, NorCal CarciNET co-moderated a breakout discussion on Clinical trials: Improving patient knowledge and understanding of clinical trials. NANETS  President, Dr. Thorvardur Halfdanarson gave a thoughtful presentation on meaningful involvement of patients in neuroendocrine cancer research. Given the increasing number of new diagnoses, there are also increasing needs and opportunities to collaborate and bring patient perspectives to the forefront of medical care. Following the Summit, Dr. Halfdanarson shared his takeaway about the importance of global patient advocacy organizations working together toward their common goal of helping those living with neuroendocrine cancer. For more about 12th INCA Global NET Patient Advocate Summit, read INCA’s blogpost: https://incalliance.org/inca-summit-2024/ TRANSCRIPT: Lisa Yen   00:00 Hi! I'm Lisa Yen. I'm the LACNETS Director of Programs and Outreach, and also the INCA Treasurer. And I'm here with Dr. Thor Halfdanarson in the beautiful town of Segovia in Spain, where we just spent the last couple days in an International Neuroendocrine Tumor Cancer Alliance. So Dr. Halfdanarson, I'd love to hear from you what you're doing here and what you've learned? Dr. Thor Halfdanarson   00:24 So yeah, I haven't really… [had] not worked with INCA in any capacity before. I've been aware of them for a long time. So, it's a wonderful international organization. So I was invited to come here and speak on behalf of NANETS on patient participation in clinical research. And it's been, I will say, an exceptionally educational meeting for me, because this is not something I do every day. Lisa Yen   00:49 Yeah, it's wonderful to have you as NANETS president, representing and collaborating. So what has that collaboration looked like for you? Dr. Thor Halfdanarson   00:57 So we, so… at NANETS, we collaborate in a variety of different forms. So we try to keep a close association with patient advocacy groups. And obviously this is very beneficial for the patient population, for the relatives and things of that nature. So I think it's just very important for the success of the mission of helping patients with neuroendocrine tumors to collaborate as closely as we can and on as many fronts as we can.  Lisa Yen   01:25 Yeah, collaboration. We like to hear that. What might it translate to, Dr. Halfdanarson?  Dr. Thor Halfdanarson   01:34 I think making connections, talking to people, literally from all around the world. Obviously, we're all fighting the same enemy, the neuroendocrine neoplasms. But just hearing different perspectives, how different countries are dealing with this and things of that nature. So more connections are always good. Lisa Yen   01:54 Wow, and especially globally.  Dr. Thor Halfdanarson   01:56 Globally, it's absolutely crucial, like I said, this is neuroendocrine tumors, or neuroendocrine tumor neoplasms, affect all of the world's population, and everywhere, the incidence is rising. We've seen that in Asia and Europe and the US. So we're all fighting the same problem.  Lisa Yen   02:13 Wow, and together, hopefully we're stronger. So what's your main takeaway from this conference? Dr. Thor Halfdanarson   02:19 So the main takeaway from this conference is that I’m full of hope that there is an incredibly strong association of patients and advocacy groups all around the world. I think we just need to connect and try to work together more for a common goal. Lisa Yen   02:42 Thank you for your collaboration. Thank you for your work to give us hope, and we look forward to seeing what that looks like in the future.  Dr. Thor Halfdanarson   02:52 It's been a pleasure. Thank you.  Lisa Yen   02:53 Thank you. THANKS TO OUR SPONSORS

On Saturday, September 21, 2024, over 50 people living with or supporting those living with neuroendocrine cancer gathered for a Regional LACNETS Educational Event in Minneapolis, Minnesota, for an afternoon of learning and connecting.   Our delightful patient panel shared their compelling insights and experiences living with NET.  They gave their thoughtful perspectives on how they initially coped with the diagnosis, weighed decisions at various crossroads and shared important lessons learned during their journey. And everyone laughed and appreciated th e practical recommendation for heated toilet seats! Dr. Philip Boudreaux, a surgical oncologist at LSU, and Dr. Chandrikha Chandrasekharan, a medical oncologist at the University of Iowa, answered various questions from our audience. They colorfully covered topics from histotripsy to nutrition for NET. Dr. Emil Lou, a medical oncologist for the University of Minnesota, gave an inclusive Overview of Treatments & Other Aspects of NETS & NECS and Dr. Thor Halfdanarson, a medical oncologist at the Mayo Clinic, spoke to the Sequencing of NET Treatments, including clinical trials.   Dr. Donna D’souza, an interventional radiologist at the University of Minnesota, Patrick McGarrah, a medical oncologist at Mayo Clinic, Dr. Ajay Prakash, a medical oncologist at the University of Minnesota, joined Dr. Boudreaux, Dr. Chandrasekharan, Dr. Halfdanarson and Dr. Lou to close the conference with a well-rounded question and answer session.  A special thank you to NANETS, who held their Regional Educational Event, for inviting us to share their conference space and expert speakers. They presented comprehensive information about neuroendocrine cancer to medical professionals. Be sure to share NANETS.net  with your doctors, so they have an opportunity to learn more about the intricacies of NET.    And we encourage you to stay connected to the local Minnesota support group, Northwood NETS . Here are some comments we have received from attendees so far:   “My compliments on the quality conference Saturday 09/21/2024 in Minneapolis.  I learned a lot and felt confident that my current treatment (watch and wait) is ok. I loved the humor and experiences shared by patients and doctors. Thank you to all who helped make that conference worth attending.”   “Thank you to everyone at LACNETS for the wonderful patient education conference in Minneapolis on Saturday.  It was the greatest! The afternoon flew by and I learned so much. It all was just excellent.”  Everything was excellent! Highly recommend to anyone to attend an in-person patient conference. We are grateful to our seven speakers: Philip Boudreaux, MD, FACS Chandrikha Chandrasekharan, MBBS Donna D’souza, MD Dr. Thor Halfdanerson, MD Dr. Emil Lou, MD, PhD, FACP Patrick McGarrah, MD Ajay Prakash, MD, PhD  And our wonderful patient panelists Rick, Jud, Dusty & Mary Beth. Here are the presentations: Dr. Emil Lou on Overview of Treatments & Other Aspects of NETS & NECS Dr. Thor Halfdanarson on Sequencing of NET Treatments  Here are two of the LACNETS Webinars mentioned during the patient panel: Novel Translational Research for Metastatic NET Patients at the NCI ' Carcinoid Heart Disease' by Dr. Allen Luis Here are additional resources referred to during the patient panel: Tissue Procurement and Natural History Study of Neuroendocrine Neoplasms (NENs), Including Adrenocortical Carcinoma (ACC) LACNETS Blog & Video on Positive Results from the NETTER-2 Trial To find out more about upcoming in-person and virtual LACNETS Educational & Wellness Events, visit our Events Page . THANKS TO OUR SPONSORS

On November 9th, LACNETS held its 2024 NET Cancer Day Symposium in Santa Monica, California, to recognize and celebrate World NET Cancer Day, which is held annually on November 10th. Over 80 NET attendees gathered to learn from renowned physicians, sponsors, and to connect with one another. Six NET experts covered topics ranging from surgery, medical therapies, Alpha PRRT, endocrinology, and clinical trials. This year’s event focused on what patients and caregivers can do to raise awareness of neuroendocrine cancer. Stephanie Alband, INCA President and Pheo Para Alliance Executive Director, presented on “Spreading Awareness Globally: INCA’s Think NENs” campaign, highlighting INCA’s efforts to raise awareness about neuroendocrine cancer and neuroendocrine neoplasm (NEN). LACNETS Board President Donna Gavin presented the 2024 Giovanna Imbesi Above and Beyond Award to Val Tippy. Each year, the award is given to an individual for outstanding dedication to NET patient advocacy. Val has been an invaluable member of the LACNETS community contributing her time and experience to help other patients. As a NETConnect Mentor, Val is the first to offer a lending hand, listening ear, along with an open heart and mind. Although Val could not attend the event in person, her family and friends surprised her with the award during a family brunch a few weeks ago. Heather Davis, LACNETS’ Associate Director of Advocacy and Outreach, presented on “Let’s Talk About NETs: How YOU Can Spread Awareness.” She stated the attendees are raising awareness by attending the event and sharing their NET journeys. Her heartfelt remarks highlighted the collective role of patients, caregivers, NET experts and pharmaceuticals in advancing early detection by making NET more top of mind in the medical community and bridging gaps in care of NET patients. Visit https://www.lacnets.org/net-awareness for resources to help raise awareness of NETs. This memorable event gave the guests opportunities to reflect and connect with one another during a drum healing session with John Fitzgerald, a Drum Circle Facilitator, and a networking lunch hour and a post-event ice cream social. Dozens of participants' excellent questions were answered by our expert speakers. We are grateful to our speakers: Stephanie Alband, INCA & The Pheo Para Alliance Martin Auerbach, MD Jaydira Del Rivero, MD Alexandra Gangi, MD Andrew Hendifar, MD Run Yu, MD   The speaker presentations are available here: "Alpha vs Beta PRRT" - Dr. Auerbach Martin "Latest in NET Medical Therapies" - Dr. Andrew Hendifar "Future of NETs" - Dr. Jaydira Del Rivero " What to Ask Your Surgeon & How to Prepare for Surgery" - Dr. Alexandra Gangi "The Endocrine in Neuroendocrine" - Dr. Run Yu Here are some comments we have received from attendees so far: “ The speakers you assembled were great! Even more important was the opportunity to meet other zebras." "My first event and thoroughly enjoyed it." “Thanks a million for this great event. I was feeling sad about med stuff until I attended and left with a huge smile on my face and more hopeful." " The speakers had so much to offer all of us, the food was delish, and the drumming was very clever....a good choice to end a wealth of very intellectual information and bring balance back to the brain. " THANKS TO OUR SPONSORS

LACNETS was busy learning from experts and making connections at the 2024 North American Neuroendocrine Tumor Society (NANETS) Annual Multidisciplinary NET Medical Symposium in Chicago, Illinois. Every year, NET scientists and medical providers gather to discuss the latest advances in Neuroendocrine Cancer. This year's Symposium showed continued growth in the interest and engagement in the NET medical community with over 534 registrants, 23 educational sessions, and 116 research/poster presentations. This Symposium is only for medical professionals. We're pleased to collaborate with the North American Neuroendocrine Tumor Society and NET patient advocacy organizations to achieve the common goal of improving the lives of those affected by neuroendocrine cancer through education and engagement. LACNETS had the unique opportunity to participate in a panel discussion titled, "Can We Talk?" about communication challenges between patient and provider and shared health care decisions, with LACNETS Director of Programs & Outreach, Lisa Yen. The enlightening session was moderated by LACNETS Medical Advisor, Dr. Daneng Li and the panel also included LACNETS Medical Advisor, Dr. Alexandra Gangi. We were inspired by hundreds of brilliant minds collaboratively working on all aspects of Neuroendocrine Cancer. Their passion and dedication to help patients and their loved ones is palpable. There was much excitement around exchanging information and learning from the community as a whole. We witnessed the workings of an exceptional community of medical professionals willing to devote extraordinary time and efforts to move the needle forward to the understanding of and effective treatment of Neuroendocrine. Stay tuned for our annual podcast episode with Dr. Guillaume (Will) Pegna who recaps the medical findings of Symposium and how they may benefit the Neuroendocrine community today and in the future. To listen to past NANETS Symposium highlights, visit our LACNETS podcast page . Oregon Health & Science University (OHSU) Medical Oncologist/NET expert, Dr. Guillaume (Will) Pegna discusses his takeaways from the 2024 NANETS Medical Symposium  University of Iowa Scientist/Researcher and NANETS NET Symposium Program Committee Chair, Po Hien Ear, PhD, shares about NANETS and the 2024 NANETS Medical Symposium, and advances in NET research  Listen to this NETCast episode "Bridging the Gap with Patient Advocacy Groups" where Dr. Jason Starr and patient advocacy leaders in the NET community review highlights from the 2024 NANETS Annual Symposium. Lisa Yen (LACNETS), Jessica Thomas (NETRF), and Josh Mailman (NorCal CarciNET) discuss the role of patients, patient advocates, and importance of building trust between patients and healthcare providers. Special thanks to our very own Lisa Yen for sharing her NET journey as a caregiver and her dedication to helping other NET patients and caregivers live richly and fully. Images: Top Left - The LACNETS Team at the exhibit table at NANETS. Top Right and Bottom Left - Dr. Thor Halfdanarsan, Lisa Yen (LACNETS), and Jenny Yessaian (Curium) Bottom Right - NET Patient Advocates with NANETS Leadership THANKS TO OUR SPONSORS

We are pleased to announce the evolution of the LACNETS organization by introducing our new name: Neuroendocrine Cancer Foundation . This rebranding signifies the strides we have made in reaching more patients and caregivers, and also in offering more educational and support resources.  The name our LACNETS' founder Giovanna Joyce Imbesi created (Los Angeles Carcinoid Neuroendocrine Tumor Society) initially represented the regional community where it began. As our reach grew nationally and internationally, we used the acronym to reflect our intent for the NET community to learn, advocate and connect. We have now chosen a name that better represents the organization we are and the broader Neuroendocrine Cancer community we serve. Read more about our mission and history here >>> Although the Neuroendocrine Cancer Foundation will expand its reach and provide more access to educational resources, medical experts and support, our commitment to the Neuroendocrine Cancer Community remains steadfast and reaffirmed. Our aim remains the same: to serve those affected by neuroendocrine cancer through education, connection and advocacy. Our Collaboration with the Carcinoid Cancer Foundation Since 2023, we have worked closely with the Carcinoid Cancer Foundation (CCF) to provide the Support Line, 'Luncheon With The Experts' and other resources. Our collaboration with CCF will continue to strengthen this year.  Contacting Us Our team remains the same. Our new website will be NCF.net . LACNETS.org will redirect indefinitely to NCF.net . Our emails will change, but we will receive emails on our current addresses. Donations Our tax ID will remain the same as #20-0062062. The Neuroendocrine Cancer Foundation may show up as LACNETS or GeneratePossibility (our former names) when searching by our Tax ID. We accept checks made to the Neuroendocrine Cancer Foundation or LACNETS. Social Media & Communications You will see our new branding being rolled out on our website, social media, and all communications over the next few months. We appreciate your patience during this transition. If you have any questions regarding this transition, please contact us at info@ncf.net. Special thanks to the exceptional medical experts who lent their knowledge and guidance during this rebranding. We are grateful to our extraordinary patient and caregiver community who continue to inspire our work daily.  Sincerely,  The Neuroendocrine Cancer Foundation Team