# Northwoods NETS > Minnesota Neuroendocrine Tumor & Cancer Support ## Posts - [Raising Awareness: International Neuroendocrine Cancer Day](https://northwoodsnets.org/raising-awareness-international-neuroendocrine-cancer-day/): Understanding Neuroendocrine Tumors On International Neuroendocrine Cancer Awareness Day, we shine a light on neuroendocrine tumors (NETs), which often go unnoticed in healthcare discussions. These tumors can develop in various areas of the body and may present a variety of symptoms that can challenge even seasoned healthcare professionals. Awareness plays a critical role in early diagnosis and effective management of this disease. Common Symptoms and Diagnosis One of the significant challenges for patients with neuroendocrine tumors is the range of symptoms experienced, which can include abdominal pain, changes in bowel habits, and flushing. These symptoms are often mistaken for less […] - [September NET Patient Conference in Minneapolis!](https://northwoodsnets.org/september-net-patient-conference-in-minneapolis/): Northwoods NETS is pleased to announce that we have a very special meeting set up for September! This will take the place of our usual in-person support meeting in September. We are coordinating with the the professional group called North American Neuroendocrine Tumor Society (NANETS) and Learn Advocate & Connect—A Neuroendocrine Tumor Society (LACNETS) to have a Regional NET Patient Education Conference on Saturday, September 21, here in Minneapolis, Minnesota. REGISTRATION IS NOW OPEN! This event features seven experts, including several from the Mayo Clinic and the University of Minnesota. Experts include NANETS President Thor R. Halfdanarson and NET researcher Emil […] - [SAVE THE DATE - Regional NET Patient Conference - September 21 - Minneapolis, MN](https://northwoodsnets.org/save-the-date-regional-net-patient-conference-september-21-minneapolis-mn/): We have a very special meeting set up for September! We are coordinating with the North American Neuroendocrine Tumor Society (NANETS) and Learn Advocate & Connect—A Neuroendocrine Tumor Society (LACNETS) to have a Regional NET Patient Education Conference on Saturday, September 21, here in Minneapolis, Minnesota. SAVE THIS DATE! Registration for this event is not quite open, but we will update this post as soon as possible.  This event features seven experts, including several from the Mayo Clinic and the University of Minnesota. Experts include NANETS President Thor R. Halfdanarson and NET researcher Emil Lou. Ask questions during an extended […] - [Chat with Dr. Thor Halfdarnason, Mayo Clinic - February 19, 2023](https://northwoodsnets.org/chat-with-dr-thor-halfdarnason-mayo-clinic-february-19-2023/): Dr. Thor Halfdarnason joined us in February 19, 2023  to have an interactive chat with members of Northwoods NETS. He discussed the latest treatments, research, and trials for the treatment of neuroendocrine tumors and neuroendocrine carcinoma. Click here for a PDF of his presentation. Northwoods NETS is a neuroendocrine cancer support group based out of the Twin Cities in Minnesota. We are a 501(c)3 nonprofit that provides support for people living with neuroendocrine tumors. - [Dr. Thor presents the latest in NET research and treatments](https://northwoodsnets.org/dr-thor-presents-the-latest-in-net-research-and-treatments/): Please join us on February 19, 2023, for our bi-monthly “Zoom” support meeting. The meeting will begin at 1:00 pm CST so please log in a few minutes early. We are pleased that Dr. Thor Halfdanarson from Mayo Clinic will be joining us for the first hour to discuss new research and treatments that are available to treat neuroendocrine tumors and cancers. Are you curious about new trials? Want more information about peptide receptor radionuclide therapy? Wondered what is in the pipeline for new therapies? Come prepared with your questions! Register for this event today!   - [NET Cancer Day in Minnesota 2022](https://northwoodsnets.org/net-cancer-day-in-minnesota-2022/): Governor Walz Proclaims NET Cancer Awareness Day We are pleased and grateful to announce that Governor Tim Walz has proclaimed Thursday, November 10th as NET Cancer Awareness Day. See the proclamation at our website. I-35W Bridge Lights Up For NET Cancer Day MN-DOT has agreed, once again, to light the I35-W Saint Anthony Falls Bridge in honor of NET Cancer Day. After sundown, the bridge will be lit up in the purple that is displayed on the zebra ribbons from ICAN. Best viewing areas to see this are on the West River Parkway or by walking on the pedestrian Stone […] - [URGENT ACTION NEEDED: Medicare Diagnostic Radiopharmaceutical Payment Equity Act of 2019 (H.R. 3772)](https://northwoodsnets.org/urgent-action-needed-medicare-diagnostic-radiopharmaceutical-payment-equity-act-of-2019-h-r-3772/): Action Requested by November 1, 2019 On October 18, 2019, an opinion piece that NorCal CarciNET Community’s Josh Mailman opinion article (“CMS policy shouldn’t penalize those with rare disease”) was published by The Hill,  The opinion piece highlighted the challenges with the current method that Medicare/CMS use to pay for radiopharmaceuticals. This webpage provides more information on how this will impact NET patients and providers along with a  tool for those that are interested in taking action. The Medicare Diagnostic Radiopharmaceutical Payment Equity Act of 2019 (H.R. 3772),  which many in the nuclear medicine community are working on to help improve, will impact Medicare […] - [UI neuroendocrine tumor program earns high European distinction](https://northwoodsnets.org/ui-neuroendocrine-tumor-program-earns-high-european-distinction/): University of Iowa Holden Comprehensive Cancer Center is the first U.S. cancer center to be designated a Neuroendocrine Tumor Center of Excellence by the European Neuroendocrine Tumor Society (ENETS). In making the award to the Iowa team in early March, ENETS listed its criteria for the distinction, including The Holden team’s advanced interdisciplinary approach for diagnosing neuroendocrine tumor (NET) patients The quality and breadth of the team’s medical treatments for NETS The team’s aftercare of NET patients Holden is already recognized as one of the world’s leading NET research centers. In 2015, Holden researchers received a $10.67 million Specialized Programs of […] - [NET Cancer Day in Minnesota 2018](https://northwoodsnets.org/net-cancer-day-in-minnesota-2018/): Northwoods NETS is pleased to announce that Senator Mark Dayton has proclaimed Friday, November 10th, NET Cancer Awareness Day in the state of Minnesota. We thank Governor Dayton for his continued recognition of this unusual cancer. It is estimated that approximately 300 Minnesotans are diagnosed with each year with this poorly understood disease. NETS, also known as neuroendocrine tumors, are considered rare tumors that have either benign or malignant behaviors. NETS develop in the hormone-producing cells of the body’s neuroendocrine system. These cells are found throughout the body in organs, such as the stomach, intestines, pancreas, lungs, endocrine glands and […] - [NCCN Guidelines for NET Patients](https://northwoodsnets.org/nccn-guidelines-for-net-patients/): The National Comprehensive Cancer Network (NCCN) has recently released a new guideline book for patients  diagnosed with neuroendocrine tumors. With very readable language it discusses what neuroendocrine tumors are, how they are diagnosed, the various types of treatments that are available based on the location your neuroendocrine tumor was found, and treatment decisions. Also included in this guide is a dictionary to easily look up terms related to neuroendocrine tumors, as well as acronyms for common abbreviations used in conjunction with neuroendocrine tumors and treatment. Endorsed by The Carcinoid Cancer Foundation and the Neuroendocrine Tumor Research Foundation, this is an […] - [PRRT is finally approved in the U.S.](https://northwoodsnets.org/prrt-is-finally-approved-in-the-u-s/): After years of randomized trials and nearly two decades of European data detailing peptide receptor radionuclide therapy, Advanced Accelerator Applications (AAA), a Novartis company, is pleased to announced that the FDA has approved the use of this therapy for patients with neuroendocrine tumors. The approval comes at a time when incidence of neuroendocrine cancers of the pancreas, lungs, and intestines are on the rise. About 7 in 100,000 people are diagnosed with neuroendocrine tumors, or NETS, each year. In the state of Minnesota, that roughly translates to about 400 patients diagnosed each year. Marketed under the brand name, LUTATHERA®,  the […] - [Dr. Thor & Dr. Tuba present The Future of PRRT & The Team Approach](https://northwoodsnets.org/dr-thor-dr-tuba-present-the-future-of-prrt-the-team-approach/): On January 14, 2018, Dr. Thor Halfdanarson and Dr. A. Tuba Kendi from Mayo Clinic Rochester presented to Northwoods NETS. Dr. Tuba, a radiologist from Mayo, has been fronting the Gallium-68 PET/MRI scan center that has been helping detect and diagnose neuroendocrine tumor patients. She is now at the forefront the PRRT (peptide receptor radionuclide therapy) at the Rochester clinic. Dr. Thor presented his vision for the newly designated Neuroendocrine Tumor clinic that prides itself on its “Team Approach” to personalized patient care to the diagnosis, management, and treatment of neuroendocrine tumors and cancers.  Dr. Thor was accompanied by physician […] - [Happy New Year!](https://northwoodsnets.org/happy-new-year/): Happy New Year to all of our NET patients, caregivers, family members, medical support teams and friends around the world. Twenty eighteen is going to be a fantastic year! - [NET Cancer Awareness Day 2017](https://northwoodsnets.org/net-cancer-awareness-day-2017/): Northwoods NETS is pleased to announce that Senator Mark Dayton has proclaimed Friday, November 10th, NET Cancer Awareness Day in the state of Minnesota. We thank Governor Dayton for his continued recognition of this unusual cancer. It is estimated that approximately 300 Minnesotans are diagnosed with each year with this poorly understood disease. NETS, also known as neuroendocrine tumors, are considered rare tumors that have either benign or malignant behaviors. NETS develop in the hormone-producing cells of the body’s neuroendocrine system. These cells are found throughout the body in organs, such as the stomach, intestines, pancreas, lungs, endocrine glands and […] - [NET Cancer Day is coming soon!](https://northwoodsnets.org/net-cancer-day-is-coming-soon/): We are about a month away from NET Cancer Day, an international awareness day to help shine a light on neuroendocrine cancers. There are many ways you can help to make an impact on this upcoming NET Cancer Day: Talk to your friends and family about your disease Host an event in your neighborhood – a walk, dinner or a vigil Share NET Cancer Day events and ribbons on your social media channels. Don your zebra apparel and use the opportunity to talk about NET Cancer when you receive a compliment/comment. Pick up ribbons and bracelets, and pins to distribute amongst […] - [Part Twelve: Where PRRT & Me part ways](https://northwoodsnets.org/part-twelve-where-prrt-me-part-ways/): In August, I went to see my specialist in Iowa City and was presented with terrible news. The lesions in my liver went to 5% tumor burden in January 2017 to 30% tumor burden in August 2017. PRRT was completely ineffective for me. (Or maybe it was effective and the results could have been worse.) But, my tumor activity was never this active prior to treatment. Doctor O’Dorisio told me that sometimes they see this happen with PRRT – where the tumor become very aggressive after PRRT and then stabilize. But, he also said, we don’t want to wait around […] - [FDA: Lutathera Action Date Set for Late January 2018](https://northwoodsnets.org/fda-lutathera-action-date-set-for-late-january-2018/): Advanced Accelerator Applications S.A. (AAA) has announced that the Food and Drug Administration (FDA), in the United States, has accepted and considered complete the resubmission of the New Drug Application (NDA) for its investigational drug lutetium Lu 177 dotatate (Lutathera).  Lutathera is the brand name for the radiologic used in Peptide Receptor Radionuclide Therapy (PRRT). The FDA has set an action date of Jan 26, 2018. AAA is attempting to obtain U.S. marketing rights of Lutathera approved for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs) in adults. Originally, they submitted their data to the FDA last year. In response, they received a […] - [Google Doodle for NET Cancer Day? Hey, why not?](https://northwoodsnets.org/google-doodle-for-net-cancer-day-hey-why-not/): Recently, while aimlessly browsing on the Internet, I discovered a website that was trying to encourage Google to make November 10th a Google Doodle to help raise awareness of NET Cancer Day. I don’t recall that happening, ever. I figure it’s August, so, now is the time to start getting these types of requests in place. Below, see my sample email that I sent to proposals@google.com to suggest November 10th as NET Cancer Day. Why not send a letter of your own? *** Hi Google Doodlers, Neuroendocrine Tumors (NETS) are rare cancerous lesions that form in endocrine cells and secrete hormones. These […] - [Treatment combinations for pancreatic neuroendocrine tumors](https://northwoodsnets.org/treatment-combinations-for-pancreatic-neuroendocrine-tumors/): A new paper has recently been released in Digestion: International Journal of Gastroenterology that reviewed previously reported European trials. These trials specifically aimed at the treatment of advanced pancreatic neuroendocrine tumors outlined several combinations of chemotherapy drugs used to help with progression free survival (PFS). Pancreatic neuroendocrine tumors (PNETS) are still relatively rare in the umbrella of all gastroenteropancreatic tumors (GEP-NETS or just NETS) and certainly amongst pancreatic lesions in general. From an earlier study that compared data from the USA, Western Europe and Japan, it was discovered all NETS were on the rise, including PNETS. PNETS On The Rise Generally, […] - [Part Eleven: In front of the eight ball](https://northwoodsnets.org/part-eleven-in-front-of-the-eight-ball/): So, it’s been a ridiculously long time since I posted and for that, I am sorry. I meant to update in May as a one-year anniversary of my first round of treatment and I was still slogging through some side effects. If you remember from the last time, I posted about my third round of treatment being a doozy. It was, and maybe, still is. Let me explain. The double whammy In November of 2016, I switched from Sandostatin to Lanreotide as part of my monthly treatment. Since Sando had slowed down effectiveness for me, my team thought Lanreotide was […] - [Expanded Access to PRRT in the United States](https://northwoodsnets.org/expanded-access-to-prrt-in-the-united-states/): We have exciting news in regards to Peptide Receptor Radionuclide Therapy (PRRT) therapy in the United States. Advanced Accelerator Applications is currently pursuing marketing approval for 177Lu-DOTA0-Tyr3-Octreotate (Lutathera). Considering that Phase III NETTER-1 clinical trial recruitment has been completed, this expanded access therapeutic protocol aims to allow patients suffering from inoperable, somatostatin receptor positive, midgut carcinoid tumors, progressive under somatostatin analogue therapy to access the investigational product, 177Lu-DOTA0-Tyr3-Octreotate (Lutathera), prior to its commercial availability. If you are interested in this treatment, please visit the program details at Clinical Trials to find out how you may be able to be treated before […] - [Mindful Zebra: My Skin Is Telling Me What?](https://northwoodsnets.org/mindful-zebra-my-skin-is-telling-me-what/): Hey, good looking, have you been noticing subtle changes with your skin? You might want to get your cute booty to the skin doctor ASAP. Patients living with neuroendocrine cancers including carcinoid are frequently familiar with two of the classic symptoms of the disease including flushing and diarrhea. Subtle, often unrecognized symptoms that are often associated with isolated benign diseases can sometimes run concurrent with patients living with neuroendocrine and carcinoid syndrome. In an article published in the NEJM Watch, Dr. Jeffrey P. Callen, reviewing an earlier study by H.K. Bell, states that often times these skin conditions, if accompanied by […] - [Felicia Temple: The Voice](https://northwoodsnets.org/felicia-temple-the-voice/): It’s not often that we have a reason to discuss reality television shows here on Northwoods NETS, but, we have a notable exception right now. The Voice contestant, Felicia Temple, 28, is also a neuroendocrine tumor patient. An amazing vocalist and songwriter, Ms. Temple was diagnosed with a appendiceal neuroendocrine tumor last year. A registered RN, she underwent surgery and six rounds of chemo before her doctor declared her NED. She has been very generous sharing her story and helping to spread awareness of our disease. We wish all the best success for her on The Voice, you have a fan […] - [Meditations for NET Cancer | Mindful Zebra](https://northwoodsnets.org/meditations-for-net-cancer/): If there is one simple thing neuroendocrine cancer patients can do to bring more clarity and calmness to our daily lives is meditation. Even five minutes a day provides a number of health benefits including decreased depression, mood regulation, increased focus, pain alleviation, blood pressure reduction, decreased cellular inflammation, and increased compassion. That’s just to name a few! If you want to read about more of the benefits of meditation, visit Live and Dare. Below is a list of some excellent meditations that you can do at home. Mindfulness Bell | A Five Minute Meditation This meditation uses an ancient bell sounds […] - [Part Ten: Round Three was a doozy](https://northwoodsnets.org/part-ten-round-three-was-a-doozy/): I left for Europe a week earlier this time to visit Munich with my sister and Oktoberfest. It was actually her first ever trip to Europe and even though I did round two by myself, it was nice to have the company. We really only had two and a half days in Munich, one day at the festival, one day at Dachau Concentration Camp and the first half day to wander around the city. The last morning we were there was spent packing and heading to the train station to catch the train to Basel. It was a short, but, […] - [Press Release | Governor Dayton Proclaims November 10 as NET Cancer Day 2016](https://northwoodsnets.org/governor-dayton-proclaims-november-10-as-net-cancer-day-2016/): NORTHWOODS NETS Minnesota Carcinoid and Neuroendocrine Cancer Support info@northwoodsnets.org Contact: Dawn Marie Peterson dawnmarie@northwoodsnets.org 612.314.9997 PRESS RELEASE For Immediate Release November 7, 2016 GOVERNOR MARK DAYTON PROCLAIMS NOVEMBER 10, 2016 AS NET CANCER AWARENESS DAY This NET Cancer Day is a very special one for survivor Dawn Marie Peterson, co-founder of the newly-formed Minnesota non-profit Northwoods NETS, an organization whose mission is to support a high quality of life for rare neuroendocrine tumor survivors and their caregivers. As a nine-year survivor of a malignant neuroendocrine tumor, and recent recipient of a life-saving treatment that she traveled to Switzerland to receive, […] - [Meet Dr. Thor Halfdanarson at our November 13th Meeting](https://northwoodsnets.org/meet-dr-thor-halfdanarson-at-our-november-13th-meeting/): Join us for our regularly scheduled support group meeting on November 13th and meet Dr. Thor Halfdanarson. This meeting takes place three days after NET Cancer Day and is our last for 2016. Dr. Thor will be giving an overview presentation on neuroendocrine tumors, what’s new and upcoming in treatments and diagnostics, and do a question and answer session with our patient community. Dr. Thor is a trained medical oncologist who specializes in neuroendocrine oncology. He began his medical training in his native country of Iceland and came to the United States in 2000 for a residency at the University of […] - [Lexicon announces publication of Telestar study results for Carcinoid Syndrome](https://northwoodsnets.org/lexicon-announces-publication-of-telestar-study-results-for-carcinoid-syndrome/): NEWS RELEASE FOR IMMEDIATE RELEASE LEXICON ANNOUNCES PUBLICATION OF TELESTAR STUDY RESULTS FOR TELOTRISTAT ETHYL IN THE JOURNAL OF CLINICAL ONCOLOGY Results from Pivotal Phase 3 Clinical Study of Telotristat Ethyl Show Clinical Benefit in Patients with Carcinoid Syndrome The Woodlands, Texas, October 31, 2016 – Lexicon Pharmaceuticals, Inc. (Nasdaq: LXRX), announced today that the Journal of Clinical Oncology published detailed results from Lexicon’s pivotal Phase 3 TELESTAR clinical study of telotristat ethyl in patients with carcinoid syndrome. The article, titled “Telotristat Ethyl, a Tryptophan Hydroxylase Inhibitor for the Treatment of Carcinoid Syndrome,” is available online at the Journal of […] - [NET Cancer Day in Minnesota - 2016](https://northwoodsnets.org/net-cancer-day-in-minnesota-2016/): We are pleased to announce that Governor Dayton has proclaimed Thursday, November 10, 2016 as NET Cancer Day in the state of Minnesota. This is the fifth year that he has offered his support in raising awareness for rare neuroendocrine cancers. The proclamation reads as follows: State of Minnesota PROCLAMATION Whereas:  Neuroendocrine tumors (NETS) often develop into cancer and, if left untreated, can result in serious illness and death; and Whereas:  Healthcare professionals often underestimate the malignant and metastatic potential of neuroendocrine tumors; and Whereas:  NET cancer patients are often misdiagnosed or receive a delay of diagnosis, which can have […] - [Part Nine: Round Two Wrap Up | PRRT & Me](https://northwoodsnets.org/part-nine-round-two-wrap-up-prrt-me/):   It’s been a slow, sleepy summer… I’m eight weeks out from round two and happy to report, I am doing well. I won’t lie and say that it’s been all wine and roses the last few weeks. (Mmmm, wine and roses…) I have been *so* tired. The hammer came down during week two and my exhaustion really peaked at week four. It finally started leveling out about week six. I am able to work and function for the most part. My house is a mess. My garden and lawn is unkept. But, for the most part, I am plodding through […] - [Q & A About the NETest](https://northwoodsnets.org/q-a-about-the-netest/): Dr. Liu, one of our esteemed NET specialists in the U.S. has a Facebook page where he offers a Question and Answer session once a month. This month, he featured guest Nancy Teixeira, a registered RN who works with Wren Labs to discuss their proprietary NETTest. Questions were asked by moderator Chris Nashville. What is WREN? Wren is a CLIA – approved clinical laboratory that is focused on diagnostic tests that improves the management of patients with neuroendocrine tumors. The first launched test, known as the NETest, has been validated in over 3,000 clinical samples. It can be used to […] - [Part Eight: Round Two - Dancing with Lu-177 | PRRT & Me](https://northwoodsnets.org/part-eight-round-two-dancing-with-lu-177/): Woah! I wrote a few weeks ago and I thought I’d have plenty of time to blog before I went to Basel for round two and the time slipped away. I am already done with round two. My treatment date was less than six days ago and I am back home in the United States. I am going to detail out some pre-trip items before I launch into the actual treatment. Accommodations I contacted Hotel Rochat and honestly, it’s a great hotel and super convenient, but, it is really expensive. They were unable to offer me the same rate they gave […] - [Why did Steve Jobs die?](https://northwoodsnets.org/why-did-steve-jobs-die/): by John McDougall, MD Steve Jobs gave tacit permission and encouragement for me to write this newsletter article about the medical and nutritional aspects of his life when he commissioned his biographer to tell a true account. “I wanted my kids to know about me…” “Also, when I got sick, I realized other people would write about me if I died, and they wouldn’t know anything. They’d get it all wrong. So I wanted to make sure someone heard what I had to say.”(556) Jobs would have been pleased to hear my challenging second opinions about his pancreatic cancer and […] - [Buyer Beware: Surprise Medical Bills](https://northwoodsnets.org/buyer-beware-surprise-medical-bills/): An investigative report from KARE-11 explains how even if you do your research picking an insurance policy, your doctors, clinics and other medical team members may not be in your network or can drop out of the network without your knowledge…and there is nothing you can do about it. - [National NET Patient Conference - 2016](https://northwoodsnets.org/national-net-patient-conference-2016/): The National NET Patient conference will be held Sept 22- 24th in New Orleans. There will be over 20 of the top specialist from around the country flying in to speak at the event. This is a 2-1/2 day event. Come join 600 or more of your fellow Zebras and families. Meet the people in person you have been talking to for years online. Nothing beats being in a room with people who totally understand what you deal with every day. It will help you make informative decisions on your treatment. Learn about all the new up and coming treatments and tests. […] - [Carcinoid Syndrome Impact Survey](https://northwoodsnets.org/carcinoid-syndrome-impact-survey/): We are excited to participate in the Carcinoid Syndrome Impact Survey, which is designed to help better understand the impact that carcinoid syndrome has on patient lives, while also exploring physicians’ approaches to treating the disease. This survey is groundbreaking in that it brings together the collective efforts of leading national and regional patient advocacy groups: Carcinoid Cancer Foundation (CCF) Neuroendocrine Cancer Awareness Network (NCAN) Neuroendocrine Tumor Research Foundation (NETRF) The Healing NET Foundation Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) NorCal CarciNET Community Big Apple NETs  By working together, it is our collective hope to shine a much needed spotlight on the […] - [Part Seven: Ten Weeks before Round Two | PRRT & Me](https://northwoodsnets.org/part-seven-ten-weeks-before-round-two/): We stayed in Switzerland for a few days after my first round and that was fine. I didn’t really have any side effects, but, I was tired. The only real thing I noticed is that I was having some acid reflux, which I don’t normally have. Hindsight being 20/20, I would have rather just flew home right away and slept for a few days. It was very nice though, we spent some time each day wandering around art galleries in Basel. Flying home and going through customs Flying home was pretty simple. We got a plane from Basel to Amsterdam, […] - [Part Six: Treatment Day Two & Three | PRRT & Me](https://northwoodsnets.org/part-six-treatment-day-two-three/): Making it through Day One with little to no side effects felt like a massive accomplishment. Neither my roomie or I suffered any ill effects from the amino acids drip prior to the PRRT treatment. Some patients do, some patients don’t. It was a gorgeous, sunny day and we ate our breakfasts and were each brought down to imaging to have an octreoscan done. The doctor had told me prior to the actual treatment that they would also place a small amount of Indium-111 into the mix, to help with imaging on Day Two to make sure that the Y-90 […] - [Part Five: Treatment Day | PRRT & Me](https://northwoodsnets.org/part-five-treatment-day/): My invitation letter requested that I check into the nuclear medicine ward on the fourth floor on Thursday at 9:30 am. I got there a little earlier so that I could find the finance office to pay my deposit on my treatment. The finance office is in the basement of the hospital and they ran my credit card, which I prayed wouldn’t get declined. It didn’t, which was probably the most stressful part of the entire treatment for me. Checking into the ward After bringing me back up to the ward, they assigned me to my room. Turns out they […] - [Part Four: First Day in Basel | PRRT & Me](https://northwoodsnets.org/part-four-first-day-in-basel/): Our first night in Basel When we woke up from our naps, we head down to the Marketplatz. There are a couple of ways to get there. When you walk out the front door of Rochat, take a left and walk to the alley, also known as Peterkirshplatz. When you get to the adjacent street, known as Petersgasse (and Nadelberg depending on where you are) you can either take the 80+ steps down to the Marketplatz or you can take a right on Petersgasse and wind your way down. We wanted to go to a restaurant I found on Yelp, […] - [Part Three: It's Departure Day | PRRT & Me](https://northwoodsnets.org/part-three-its-departure-day/): My treatment day was scheduled for May 19th, so we were flying out the evening of the 16th, which just happened to be my Mom’s 70th birthday. This would give us an arrival in Basel mid-afternoon on Tuesday, so we would have a full day on Wednesday to get the lay of the land in Basel and do a little exploring. Flying Time Our flight over was pretty standard stuff, as I mentioned in a previous post, we both used a product called No-Jet-Lag, which you take upon takeoff and every two hours that you are traveling. It’s a homeopathic […] - [Part Two: I'm going to Basel - Now WHAT? | PRRT & Me](https://northwoodsnets.org/part-two-im-going-to-basel-now-what/): I got my acceptance on April 6th for a treatment date of May 19th, so I had about five weeks to pull it together. I was due for my Sando shot on the 8th of April, but, my oncologist deferred it to make sure that my receptors would be good and thirsty for treatment. I did use subcutaneous octreotide up to three days before treatment. Because I need so much octreotide to keep my symptoms under control, I was doing a bazillion shots a day – okay, maybe four, but, sometimes up to six. I probably should have done six […] - [Part One: Getting to Basel | PRRT & Me](https://northwoodsnets.org/part-one-getting-to-basel/): As a NET Cancer patient for almost nine years, my decision to go to Basel was not a light decision. Cost was really the biggest barrier for me. But, the stark realization that I didn’t really need a 401k if I were dead became very real. I waited almost two years to get into the Y-90 trial at the University of Iowa, where I have been seen as a patient for seven years. I was told by the research administrator that “I wasn’t high priority enough” to get into the trial, despite having had three major surgeries, a failed round of […] - [PRRT & Me (Peptide Receptor Radionuclide Therapy and Dawn Marie)](https://northwoodsnets.org/prrt-me-peptide-receptor-radionuclide-therapy-and-dawn-marie/):   Greetings everyone, this is is the first post in a series that I will be blogging at about my PRRT experience in Basel, Switzerland. I am a nine-year pancreatic neuroendocrine cancer survivor and will be undergoing my first treatment with Y-90. If you are curious about my history, please visit my profile page. I update that as I have new treatments. This blog will be specifically about my experience with treatment in Switzerland and will include tips about the treatment and the travel in general. Please, do not hesitate to contact me with questions. [hide_email dawnmarie@northwoodsnets.org] >>> Part Two - [NOLA to offer Gallium 68 Scan Study](https://northwoodsnets.org/nola-to-offer-gallium-68-scan-study/): NEW ORLEANS – Ochsner Medical Center – Kenner and the New Orleans Neuroendocrine Tumor Specialists (NOLANETS) have launched the Gallium 68 Scan Study to test the effectiveness of this diagnostic tool to detect neuroendocrine tumors. Ochsner – Kenner is the only site from Louisiana through the Florida Panhandle to offer this groundbreaking diagnostic tool in a clinical trial. While most people may not be familiar with rare neuroendocrine tumors, they most certainly have heard of Apple icon Steve Jobs who succumbed to neuroendocrine pancreatic cancer in 2011. Jobs’ public battle with the disease raised awareness of these types of tumors […] - [Ipsen representative to present at May 15th support meeting](https://northwoodsnets.org/ipsen-representative-to-present-at-may-15th-support-meeting/): Northwoods NETS is pleased to announce that Ann Collins-Hattery (RN, MS, AOCN, ARNP), a Clinical Nurse Educator, on behalf of Ipsen Pharmaceuticals will be presenting the first hour of our regularly scheduled support meeting. If you have ever had any questions about Ipsen products such as Lanreotide / Somatuline Depot, now is your perfect chance to find out more about this medication and how it can help you manage symptoms caused from neuroendocrine and carcinoid syndromes. Please join us on May 15th at 3pm – 5pm at Fairview Ridges Hospital in Burnsville, MN. We invite you to bring to bring your friends and […] - [Coping with Cancer Survey](https://northwoodsnets.org/coping-with-cancer-survey/): Northwoods NETs has received a request from East Tennessee State University to share a survey on coping with cancer to our community. Please see the letter and link for this survey below: Hello, my name is Jameson K. Hirsch, Ph.D., and I am a Clinical Psychologist at East Tennessee State University. I have received approval from the Institutional Review Board at my University to conduct a survey focused on well-being and cancer. Although much is known about the often-negative physical and psychological implications of cancer, less is known about protective factors that might improve health and well-being in persons with […] - [November 10 is NET Cancer Day in Minnesota](https://northwoodsnets.org/november-10-is-net-cancer-day-in-minnesota/): NORTHWOODS NETS https://northwoodsnets.org/ info@northwoodsnets.org Contact: Dawn Marie Peterson dawnmarie@northwoodsnets.org 612.314.9997   GOVERNOR MARK DAYTON PROCLAIMS NOVEMBER 10, 2015 AS NET CANCER DAY Just a year after a Burnsville woman lost her mother to pancreatic neuroendocrine cancer—the cancer that took the life of entrepreneur Steve Jobs—her youngest son was diagnosed with the same type of tumors in his pancreas. The following year, another teenage son was also diagnosed with this disease. Today, new research, more education and additional therapies to diagnosis and treat neuroendocrine tumors give hope to individuals like Nancy Marian for her sons and those who suffer with this […] - [NET Cancer Day Awareness PSA](https://northwoodsnets.org/net-cancer-day-awareness-psa/): Trey Anastasio, singer/songwriter and brother of a neuroendocrine cancer patient who succumbed to the disease six years ago, made this video to help raise awareness for rare Neuroendocrine Cancers. NET Cancer Day is November 10th. Please share and help spread information about this incurable cancer.     - [NET Cancer Day in Minnesota | 2015](https://northwoodsnets.org/net-cancer-day-in-minnesota-2015/): We are pleased to announce that Governor Dayton has proclaimed November 10, 2015 as NET Cancer Day in the state of Minnesota. This is the fourth year that he has offered his support in raising awareness for rare neuroendocrine cancers. The proclamation reads as follows: State of Minnesota PROCLAMATION Whereas:  Neuroendocrine tumors (NETS) often develop into cancer and, if left untreated, can result in serious illness and death; and Whereas:  Healthcare professionals often underestimate the malignant and metastatic potential of neuroendocrine tumors; and Whereas:  NET cancer patients are often misdiagnosed or receive a delay of diagnosis, which can have a […] - [PRRT offers longer progression free survival](https://northwoodsnets.org/prrt-offers-longer-progression-free-survival/): New results from the NETTER-1 study that compared Sandostatin LAR 60mg versus treatment with the novel peptide receptor radionuclide therapy (PRRT) Lutathera have been made available. These findings, released at the 2015 European Cancer Congress, show that for patients living with unresectable mid-gut neuroendocrine cancers that PRRT provided a longer progression free survival than with just long-acting somastatin analogues alone. Read more about the findings of this study. - [Petition: Protest the high cost of cancer drugs to patients](https://northwoodsnets.org/petition-protest-the-high-cost-of-cancer-drugs-to-patients/): Drugs for cancer care have become astronomically high, forcing many patients to do without. While the cost of cancer medications is increasing at an alarming rate, overall household incomes are down about 8% from a decade ago. Even patients with health insurance are seeing 20-25% out of pocket expenses for their care. This has to stop. Please consider signing this petition, which will be sent to the, Secretary of Health and Human Services, the U.S. House of Representatives, the U.S. Senate and the President of the United States in order to raise awareness about the devastating consequences to patients. Please follow this link […] - [Keeping track of your health just got easier!](https://northwoodsnets.org/keeping-track-of-your-health-just-got-easier/): The Carcinoid Cancer Foundation is pleased to announce that a new unique tool for carcinoid/NETs patients and their caregivers is now available! The Carcinoid NETs self-care tool, powered by Health Storylines™ allows you to track your mood, symptoms, and more, on the same timeline as your treatment. The Carcinoid NETs app makes sure you have an accurate, shareable record of your experience between physician visits, and helps you and your care team discover the treatment strategies that are working best for you. With the Carcinoid NETs app, you can engage in a range of Health Tools that help you better […] - [2015 MINNEAPOLIS NET CANCER PATIENT CONFERENCE ](https://northwoodsnets.org/2015-minneapolis-net-cancer-patient-conference/): Led by nationally renowned NET cancer physician specialists, this program will help patients be their own advocates and flow current data and information to the medical community. The topics covered during the conference are critical to the diagnosis, treatment and overall welfare of NET patients. Plenty of Q & A time is provided. The $25 registration fee includes a full day of world class presentations, continental breakfast, lunch and coffee breaks. Click here to learn more and to register for this event. - [Natural History of Familial Carcinoid - Clinical Trial](https://northwoodsnets.org/natural-history-of-familial-carcinoid-clinical-trial/): We have a few patients in our group that have strong connections with carcinoid in their family. A new study at NIH has opened and we strongly encourage those affected to look into this. I have cut and paste an email that we received from Jenny Pettit about this study: Greetings, Myself and my Aunt (deceased) have been diagnosed with Familial Midgut Carcinoid/NETS.  As I feel it is curse (due to that my children may have a 50% chance of inheriting this) yet a blessing at the same time.  This study has opened up a new world of opportunities to myself […] - [NET Cancer Day 2014 - 35W Bridge & Izzy the Islet Cell Zebra](https://northwoodsnets.org/net-cancer-day-2014-35w-bridge-izzy-the-islet-cell-zebra/): We had our first winter weather event strike on NET Cancer Day, which made travel around the Twin Cities difficult. That didn’t stop Izzy the Islet Cell Zebra from going down to Stone Arch Bridge in Minneapolis to see the 35W bridge over the Mississippi lit up in honor of NET Cancer Day. The sky was odd. It was still snowing around the Metro and it was bitterly cold on the bridge. Here are some photos of what Izzy saw!     - [35W Bridge Shows off its Stripes in Support of NET Cancer Day!](https://northwoodsnets.org/35w-bridge-shows-off-its-stripes-in-support-of-net-cancer-day/): NORTHWOODS NETS https://northwoodsnets.org/ info@northwoodsnets.org Press Release Contact: Dawn Marie Peterson Email: dawnmarie@northwoodsnets.org Phone: 612.314.9997 FOR IMMEDIATE RELEASE 7 A.M. CST, November 10, 2014 35W Bridge SHOWS OFF ITS STRIPES in Support of NET Cancer Day MINNEAPOLIS, MN:  If the 35W Bridge appears to be wearing stripes tonight, it is! Monday, November 10 is worldwide NET Cancer Day. NET cancers, caused from rare neuroendocrine tumors or NETS, are the “zebras” of the cancer world. When doctors are in medical school, they learn when diagnosing illnesses that they should be looking for “horses,” or common disease causes, rather than “zebras,” or rare causes. NETS […] - [NET Cancer Day Selfies!](https://northwoodsnets.org/net-cancer-day-selfies/): Northwoods NETS held their support group meeting on November 9th, the day before NET Cancer Day. Our group participated in the “selfie” initiative, which helps gives a face to NET Cancer and the obstacles patients go through to get a proper diagnosis. Here are the Northwoods NETS that participated. If you weren’t able to attend the meeting, but did a selfie, send me an email and I will add you! [hide_email dawnmarie@northwoodsnets.org] Two of our members from Duluth didn’t get a chance to make it to our meeting, but, also supported the cause. #NETCancerDay - [NET Cancer Awareness Ideas](https://northwoodsnets.org/net-cancer-awareness-ideas/): This is a list of great ideas to help raise awareness in our communities that Lavonne Levar, one of our pancreatic neuroendocrine patients, has compiled. If you would like to add to the list, drop me a note at [hide_email dawnmarie@northwoodsnets.org] I will be glad to add on! Let’s keep the flow going! Bring a NET fact sheet to physicians, with something fun like Zebra balloons, or goodies of some kind wrapped in zebra paper.  Make it fun and positive.  I am going to deliver some to gastro office, oncology office, and gp office. Bring a NET fact sheet to […] - [Results of the largest NET Patient Quality of Life Survey](https://northwoodsnets.org/results-of-the-largest-net-patient-quality-of-life-survey/): Results from first global survey of neuroendocrine tumor (NET) patients reveal profound impact of this rare cancer on quality of life The International Neuroendocrine Cancer Alliance (INCA) and Novartis announced the quality-of-life results from the first global survey of patients with neuroendocrine tumors (NETs), a rare type of cancer. Nearly 2,000 patients from 12 countries completed the survey, which was a collaborative effort between INCA and Novartis. The results were presented at a medical meeting and provide compelling data documenting the impact of NETs on people living with this disease. These quality-of-life findings are the first in a series of […] - [4th Focus on Neuroendocrine Tumors](https://northwoodsnets.org/4th-focus-on-neuroendocrine-tumors/): On Friday, October 24th, Abramson Cancer Center and Caring for Carcinoid presented their 4th Focus on Neuroendocrine Tumors. If you were unable to attend or missed the live streaming event, you can watch the archived event online here. Presentations include: Upcoming Abramson Cancer Center Events Michal Greenberg Development, Abramson Cancer Center Management of NETs – Overview David Metz, MD; Debbie Cohen, MD Gastroenterology; Nephrology, Abramson Cancer Center The Changing Face of NETs Diagnosis and Management Edward Wolin, MD Medical Oncology, Samuel Oschin Cancer Center Breaking News from Caring for Carcinoid Foundation and Penn’s Abramson Cancer Center Carl June, MD Inmunotherapy, Abramson Cancer Center Information […] - [NET Cancer Day Selfie!](https://northwoodsnets.org/net-cancer-day-selfie/): One of the activities of the International NET Cancer Alliance for this year’s NET Cancer Day on November 10th (Monday) will be a streaming of photos from social media using the hashtag #NETCancerDay to form a Slide Show on the NET Cancer Day website. Doing this will help us show to the world the astonishing diversity of Neuroendocrine disorders, emphasizing the often long periods of time before gaining a diagnosis, and the misdiagnoses that happen before the true picture is revealed. Come on Northwoods NETS – we encourage you to get involved! This is all you need to do to […] - [PRESS RELEASE: Governor Dayton Proclaims November 10th NET CANCER DAY](https://northwoodsnets.org/press-release-governor-dayton-proclaims-november-10th-net-cancer-day/): NORTHWOODS NETS Welcome info@northwoodsnets.org Press Release Contact: Dawn Marie Peterson Email: dawnmarie@northwoodsnets.org Phone: 612.314.9997 FOR IMMEDIATE RELEASE 7:30 A.M. CST, October 11, 2014 GOVERNOR MARK DAYTON PROCLAIMS NOVEMBER 10, 2014 AS NET CANCER DAY MINNEAPOLIS, MN OCTOBER 11, 2014: Northwoods NETS is honored to announce that Governor Mark Dayton has signed a proclamation naming Sunday, November 10, 2013 as NET Cancer Day for the third year in a row. Worldwide, November 10th is recognized by patients, medical professionals and advocacy groups to raise awareness for this rare, complex and frequently misdiagnosed form of cancer. It was pancreatic neuroendocrine cancer that […] - [Governor Dayton proclaims November 10th NET Cancer Day!](https://northwoodsnets.org/governor-dayton-proclaims-november-10th-net-cancer-day/): Northwoods NETS is honored to announce that Governor Mark Dayton has signed a proclamation naming Sunday, November 10, 2013 as NET Cancer Awareness Day for the third year in a row. Worldwide, November 10th is recognized by patients, medical professionals and advocacy groups to raise awareness for this rare, complex and frequently misdiagnosed form of cancer. It was pancreatic neuroendocrine cancer that claimed the life of entrepreneur Steve Jobs in 2011. There are 125,000 neuroendocrine cancer patients in the U.S. alone, with 11,000 cases diagnosed yearly. - [Focus on Neuroendocrine Tumors - Streaming Conference](https://northwoodsnets.org/focus-on-neuroendocrine-tumors-streaming-conference/): If you were unable to attend this year’s national conference in North Carolina presented by the Carcinoid Cancer Awareness Network, you have a wonderful opportunity to stream the 4th Focus on Neuroendocrine Tumors Conference being presented by Penn Medicine Abramson Cancer Center and the Caring for Carcinoid Foundation. Registration is free, however donations are accepted. This is a conference for patients and caregivers and features a number of experts discussing the diagnosis and management of neuroendocrine tumors. Download the program to see topic discussions and the days events. This event will take place on October 24th, 2014.     - [Rare Disease Infographic](https://northwoodsnets.org/rare-disease-infographic/): While not specifically related to NETS, this Infographic puts the emphasis on rare diseases, which neuroendocrine cancers are classified. Sermo is an online physician social media and networking site. Check out their infographic to remind doctors that sometimes there are zebras amongst those horses. - [Zebra Talk](https://northwoodsnets.org/zebra-talk/): Zebra Talk is a wonderful, patient-friendly guide on the world of neuroendocrine cancer. Featuring information and tips on navigating this disease from diagnoses to treatments. Below is a note from the editor, Suzi Garber. “This booklet is intended as a reference for those newly diagnosed with NETs, in the process, or hoping to explore this bewildering world. It is also a guide to resources that can empower patients through knowledge and the mentorship of others to make informed decisions for medical care.  It is not intended as medical advice, but as a collection of useful facts and pursuable options. Opinions […] - [Video presentation of Nancy Teixeira from Wren Labs on May 18, 2014](https://northwoodsnets.org/video-presentation-of-nancy-teixeira-from-wren-labs-on-may-18-2014/): [embedplusvideo height=”400″ width=”584″ editlink=”http://bit.ly/Txp2YA” standard=”http://www.youtube.com/v/0YfLOUS61pg?fs=1″ vars=”ytid=0YfLOUS61pg&width=584&height=400&start=&stop=&rs=w&hd=0&autoplay=0&react=1&chapters=&notes=” id=”ep1361″ /] On May 18th, 2014, Nancy Teixeira, administrator from Wren Labs, talked to Northwoods NETS to talk about their unique biomarker that helps detect neuroendocrine cells in the blood sooner than any other biomarker including Chromagranin A (CGA) or pancreastatin. Nancy is both a RN and a Carcinoid patient, so she is very knowledgeable about the disease. Download the Wren Labs Powerpoint Presentation – May 18, 2014. Visit Wren Labs for more information. - [Wren Labs to Visit Northwoods NETS](https://northwoodsnets.org/wren-labs-to-visit-northwoods-nets/): Nancy Teixeira, who is a Carcinoid cancer patient, registered nurse and the Administrator/Nurse Clinician for Wren Laboratories, LLC will be presenting to Northwoods NETS on May 18th at Fairview Ridges Hospital in Burnsville, MN. She will begin her talk at 2pm, one hour before our normal support group meeting. Nancy has been living with the diease for over 18 years. Wren has developed an exciting state-of-the-art molecular biomarker test called the NETest that trends the proliferation of NETs prior to tumor(s) showing up on imaging. The NETest can accurately illustrate NETs cell activity in a proactive fashion, empowering the physician and patient to determine […] - [Dr. Vargas Presents to Northwoods NETS - Video & Powerpoint](https://northwoodsnets.org/dr-vargas-presents-to-northwoods-nets-video-powerpoint/): Northwoods NETS was extremely lucky to have Dr. Luciano Vargas from the University of Nebraska Medical Center present to us on March 9, 2014. He is part of a multi-disciplinary team that works specifically with patients living with neuroendocrine cancers. At 51:00 My first first camera’s battery died, so it was switched out to a mobile, handheld device. The video and audio quality changes, but it is still okay. Special thanks to Nebraska Medical Center’s Neuroendocrine Tumor Program team for presenting to Northwoods NETS. [embedplusvideo height=”400″ width=”584″ editlink=”http://bit.ly/1e3zH69″ standard=”http://www.youtube.com/v/Orlery1YSV4?fs=1″ vars=”ytid=Orlery1YSV4&width=584&height=400&start=&stop=&rs=w&hd=0&autoplay=0&react=1&chapters=&notes=” id=”ep7400″ /] Power Point Carcinoid Presentation by Dr. Luciano Vargas (Eventually, […] - [Dr. Vargas presents to Northwoods NETS](https://northwoodsnets.org/dr-vargas-presents-to-northwoods-nets/): On Sunday, March 9th, 2014, the Neuroendocrine Tumor Program team of Nebraska Medical Center presented their multidisciplinary approach to Northwoods NETS. Dr. Luciano Vargas gave a very informative speech that was a good primer about neuroendocrine tumors in general, as well as how their center approaches this disease. [embedplusvideo height=”450″ width=”584″ editlink=”http://bit.ly/1kkv8no” standard=”http://www.youtube.com/v/Orlery1YSV4?fs=1″ vars=”ytid=Orlery1YSV4&width=584&height=450&start=&stop=&rs=w&hd=0&autoplay=0&react=1&chapters=&notes=” id=”ep4986″ /] - [2014 NET Patient Conference has been announced](https://northwoodsnets.org/2014-net-patient-conference-has-been-announced/): A conference that includes all types of neuroendocrine tumor patients including mid-gut ‘noids, Lungnoids, P-Net patients and more. get ready for another fantastic lineup featuring over 20 world class NET experts presenting the information you need to make informed decisions about your health. Some of the topics are brand-new and just published, sprinkled in with advice from the experts on the top issues faced by NET patients. Topics that will be covered welcome an audience of all levels, including patients, family members and caretakers of patients, as well as physicians and other health professionals. Plus, you’ll get to network with hundreds of other patients who understand what you are […] - [Unprecedented Responses Seen in Neuroendocrine Tumors](https://northwoodsnets.org/unprecedented-responses-seen-in-neuroendocrine-tumors/): Summary: Robert Fine, MD, reported at a press conference held in advance of the 2014 Gastrointestinal Cancers Symposium (GICS), that the chemotherapy combination of capecitabine plus temozolomide either stalled disease progression or shrank tumors in 97% of patients whose disease had worsened after standard high-dose octreotide. Read the full story at Medscape. You can sign up for a free account to access the full article. - [Neuroendocrine Tumours Reference Guide for Patients and Families](https://northwoodsnets.org/neuroendocrine-tumours-reference-guide-for-patients-and-families/): Developed by our friends at the Carcinoid Neuroendocrine Tumour Society Canada group, this patient-friendly handbook was developed to provide you with information and support as you confront and adapt to a neuroendocrine tumour (NET) diagnosis. Visit their site to download your PDF copy of this indispensible handbook. - [Video presentations, Symptoms associated with non-carcinoid NETS and Member Profiles](https://northwoodsnets.org/video-presentations-symptoms-associated-with-non-carcinoid-nets-and-member-profiles/): Northwoods NETS has been working hard to make our website an easy-to-navigate and useful starting point for people who have been affected by neuroendocrine cancers. We have added some new areas to the site to help you find more information about this rare disease. Member Profiles These are profiles of some of the members of our group. It’s a nice place to compare your story and to connect with other members. Video Presentations We have a variety of video presentations, usually from medical conferences, from experts all over the globe. Symptoms associated with neuroendocrine tumors that are not carcinoid For […] - [I-35W Bridge strides it's stripes](https://northwoodsnets.org/i-35w-bridge-strides-its-stripes/):   The I-35W Bridge shows off it’s stripes for 2013’s Worldwide NET Cancer Day! Special thanks to Governor Mark Dayton for proclaiming this day in Minnesota and MN-DOT for making the bridge “go zebra.” - [Press Release: I-35W Bridge goes zebra for NET Cancer Awarness Day 2013](https://northwoodsnets.org/i-35w-bridge-goes-zebra-for-net-cancer-awarness-day-2013/): NORTHWOODS NETS https://northwoodsnets.org/ info@northwoodsnets.org  Press Release Contact: Dawn Marie Peterson Email: dawnmarie@northwoodsnets.org Phone: 612.296.3804 FOR IMMEDIATE RELEASE 12 P.M. CST, November 4, 2013 I-35W Bridge goes zebra for net cancer awareness day MINNEAPOLIS, MN:  If the 35W Bridge appears to be wearing stripes next weekend, it is. Sunday, November 10 is worldwide NET Cancer Day. NET cancers, caused from rare neuroendocrine tumors or NETS, are the “zebras” of the cancer world. When doctors are in medical school, they learn when diagnosing illnesses that they should be looking for “horses,” or common disease causes, rather than “zebras,” or rare causes. NETS are rare, […] - [Press Release: Governor Dayton Proclaims November 10th as NET Cancer Awareness Day](https://northwoodsnets.org/press-release-governor-dayton-proclaims-november-10th-as-net-cancer-awareness-day/): NORTHWOODS NETS https://northwoodsnets.org/ info@northwoodsnets.org Press Release Contact: Dawn Marie Peterson Email: dawnmarie@northwoodsnets.org Phone: 612.296.3804 FOR IMMEDIATE RELEASE 1:15 P.M. CST, October 28, 2013 Governor Mark Dayton proclaims November 10, 2013 as Net Cancer Awareness Day MINNEAPOLIS, MN OCTOBER 28, 2013:  Northwoods NETS is honored to announce that Governor Mark Dayton has signed a proclamation naming Sunday, November 10, 2013 as NET Cancer Awareness Day for the second year in a row. Worldwide, November 10th is recognized by patients, medical professionals and advocacy groups to raise awareness for this rare, complex and frequently misdiagnosed form of cancer. It was pancreatic neuroendocrine cancer that […] - [Governor Dayton proclaims November 10th, NET Cancer Awareness Day](https://northwoodsnets.org/governor-dayton-proclaims-november-10th-net-cancer-awareness-day-2/): We are pleased and grateful to announce that Governor Mark Dayton has proclaimed Sunday, November 10th as NET Cancer Awareness Day. The proclamation reads as follows: State of Minnesota PROCLAMATION Whereas:  Neuroendocrine tumors (NETS) often develop into cancer and, if left untreated, can result in serious illness and death; and Whereas:  Healthcare professionals often underestimate the malignant and metastatic potential of neuroendocrine tumors; and Whereas:  NET cancer patients are often misdiagnosed or receive a delay of diagnosis, which can have a negative impact on their chance of survival and quality of life; and Whereas:  Survival for NET cancer patients is further compromised by fragmented […] - [Uniform Standard of Care for Physicians - stop HMO and Insurance Carrier Abuse](https://northwoodsnets.org/uniform-standard-of-care-for-physicians-stop-hmo-and-insurance-carrier-abuse/): We urge you to please read and consider signing the Uniform Standard of Care for Physicans petitions. Petition Background Congress should mandate that ANY PHYSICIAN WHO USES HIS/HER MEDICAL LICENSE IN A CAPACITY IN WHICH THE PHYSICIAN’S DECISION(S) OR ACTION(S) AFFECT THE CARE OF THE PATIENT SHOULD BE HELD TO THE SAME STANDARD(S) OF CARE AS THE PHYSICIAN(S) WHO DIRECTLY CARE FOR THE PATIENT. Currently, physicians who are hired by insurance carriers, HMO’s and other health care entities for the purpose of COST-CONTAINMENT are not held to the same standard(s) of care as the physician(s) who care directly for the […] - [Vote for Carcinoid Research](https://northwoodsnets.org/vote-for-carcinoid-research/): Now through March 4th, you can vote every day to help LSUHSC Foundation – Carcinoid Research Fund win $50,000 towards research! The Neuroendocrine Program at Ochsner Medical Center – Kenner specializes in the diagnosis and management of all forms of neuroendocrine tumors, of which carcinoid are the most common. The program is an affiliation between Louisiana State University Health Science Center and Ochsner Medical Center. Gulf Coast Bank is awarding their top ten charities with $50,000. Click to vote here! - [Faces of Hope](https://northwoodsnets.org/faces-of-hope/): A great patient video from the Carcinoid Cancer Foundation. [youtube 5IqspD6YDEo] - [Photos from NET Cancer Day 2012](https://northwoodsnets.org/photos-from-net-cancer-day-2012/): NET Cancer Day 2012. A small group of patients and family members attended the lighting together of the I-35W bridge in honor of NET Cancer Day. - [35W Bridge Shows off its Stripes](https://northwoodsnets.org/35w-bridge-shows-off-its-stripes/): Striped in an alternating pattern of purple and white lights to help raise awareness in honor of NET Cancer Awareness Day. - [Press Release: 35W Bridge Goes Zebra for NET Cancer Awareness Day](https://northwoodsnets.org/35w-bridge-goes-zebra-for-net-cancer-awareness-day/): NORTHWOODS NETS https://northwoodsnets.org/ info@northwoodsnets.org Press Release Contact: Dawn Marie Peterson Email: dawnmarie@northwoodsnets.org Phone: 612.296.3804 FOR IMMEDIATE RELEASE 12 P.M. CST, October 31, 2012  35W Bridge Goes Zebra for NET Cancer Awareness Day MINNEAPOLIS, MN:  If the 35W Bridge appears to be wearing stripes next weekend, it is. Saturday, November 10 is worldwide NET Cancer Day. NET cancers, caused from rare neuroendocrine tumors or NETS, are the “zebras” of the cancer world. When doctors are in medical school, they learn when diagnosing illnesses that they should be looking for horses, or common disease causes, rather than zebras, or rare causes. NETS are rare, […] - [Press Release: Governor Mark Dayton proclaims November 10, 2012 as Net Cancer Awareness Day](https://northwoodsnets.org/press-release-governor-mark-dayton-proclaims-november-10-2012-as-net-cancer-awareness-day/): NORTHWOODS NETS https://northwoodsnets.org/ info@northwoodsnets.org Press Release Contact: Dawn Marie Peterson Email: dawnmarie@northwoodsnets.org Phone: 612.296.3804 1:15 P.M. CST, October 29, 2012 Governor Mark Dayton proclaims November 10, 2012 as Net Cancer Awareness Day MINNEAPOLIS, MN OCTOBER 29, 2012:  Northwoods NETS is pleased to announce that Governor Mark Dayton has signed a proclamation naming November 10, 2012 as NET Cancer Awareness Day. Worldwide, November 10th is recognized by patients, medical professionals and advocacy groups to raise awareness for this rare, complex and frequently misdiagnosed form of cancer. Tragically, pancreatic neuroendocrine cancer claimed the life of entrepreneur Steve Jobs in 2011. Neuroendocrine tumors […] - [Governor Dayton Proclaims November 10th NET Cancer Awareness Day](https://northwoodsnets.org/governor-dayton-proclaims-november-10th-net-cancer-awareness-day/): We are pleased to announce that Minnesota Governor Mark Dayton has proclaimed November 10, 2012 NET Cancer Awareness Day. The proclamation reads as follows: State of Minnesota PROCLAMATION Whereas:  Neuroendocrine tumors (NETS) often develop into cancer and, if left untreated, can result in serious illness and death; and Whereas:  Healthcare professionals often underestimate the malignant and metastatic potential of neuroendocrine tumors; and Whereas:  NET cancer patients are often misdiagnosed or receive a delay of diagnosis, which can have a negative impact on their chance of survival and quality of life; and Whereas:  Survival for NET cancer patients is further compromised […] - [New web site for Northwoods NETs](https://northwoodsnets.org/new-web-site-2012/): We are pleased to welcome you to the new web site for Northwoods NETs, the Minnesota Carcinoid & Neuroendocrine Cancer Support Group. We will be developing more content over the summer, but, in the meantime, feel free to look around and utilize the link sites and certainly, drop in for one of our bi-monthly meetings. ## Pages - [Event Venues](https://northwoodsnets.org/event-venues/) - [Venue Dashboard](https://northwoodsnets.org/venue-dashboard/) - [Submit Venue Form](https://northwoodsnets.org/submit-venue-form/) - [Event Organizers](https://northwoodsnets.org/event-organizers/) - [Organizer Dashboard](https://northwoodsnets.org/organizer-dashboard/) - [Submit Organizer Form](https://northwoodsnets.org/submit-organizer-form/) - [Events](https://northwoodsnets.org/events/) - [Event Dashboard](https://northwoodsnets.org/event-dashboard/) - [Post an Event](https://northwoodsnets.org/post-an-event/) - [Privacy Policy](https://northwoodsnets.org/privacy-policy/): Who we are We are Northwoods NETS. We are a patient support group for those diagnosed with neuroendocrine tumors. Our website address is: https://northwoodsnets.org/. Comments When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection. An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is […] - [Podcasts - Neuroendocrine Tumors](https://northwoodsnets.org/links/podcasts-neuroendocrine-tumors/): This is a list of noteworthy podcasts discussing diagnosis, treatment, and living with neuroendocrine tumors. - [PRRT - FAQ](https://northwoodsnets.org/treatment-options/standard-treatment/prrt-faq/): We get a lot of questions about Peptide Receptor Radionuclide Therapy (PRRT). This is a list of questions answered by Dawn Marie about her personal experience with PRRT. What to take with? Some say hardly anything because of the radioactive. They kept me hospitalized in Europe for several days because of the radiation levels. Here in the U.S., I understand that they send you home the same day. So, I wore the same clothes every day while I was hospitalized and when I left the hospital, I threw out anything that I wore (if it was something I could part […] - [Medication Costs](https://northwoodsnets.org/tips/medication-costs/): Sometimes we have medications that can be cost-prohibitive. Here are some resources to find ways to help pay for your medications.   GoodRx – this is a great program if your health insurance doesn’t cover your prescriptions. GoodRx works with pharmacies all over to help provide patients with cost-effective ways to get their meds. They have a free plan that works for many medications and a paid “Gold” membership which gives you expanded access to medications and, in some cases, lower prices. Mark Cuban Cost Plus is a welcome addition to the prescription medication game. While Cost Plus doesn’t have […] - [Etiquette for Support Sundays](https://northwoodsnets.org/about/etiquette-for-support-sundays/): Etiquette for Support Sundays Confidentiality & Safety First and foremost, “What is shared in the group, stays in the group.” Respect the privacy of each patient and caregiver. YOU make the decision to share or not to share personal and medical information. Personal information will not be videotaped or shared outside the meeting. We are not doctors nor do we offer medical advice, diagnosis, or treatments. Share feelings and experiences, but not advice. Each person has a range of needs. Some may want to share feelings and experiences while others are looking for advice. If you are not seeking advice, […] - [Volunteer](https://northwoodsnets.org/volunteer/): Northwoods NETS is a growing 501(c)3 organization located in the Twin Cities of Minneapolis and St. Paul. We serve our immediate state of Minnesota along with surrounding states that currently have no active support groups such as Wisconsin, Iowa, Nebraska and North and South Dakota. We have a number of initiatives that we are putting in place in 2017 and we could use your help! Special Event Volunteer: Someone who wants to occasionally help with a special events. Medium commitment level. We will email those people when a special event volunteer opportunity arises. These would be things like helping to […] - [Donate](https://northwoodsnets.org/donate/): Northwoods NETS supports a high quality of life for neuroendocrine cancer survivors and caregivers  through its website, education and support sessions, awareness and advocacy activities. It is through your generous contributions that we are able to continue this life affirming work. Northwoods NETS is a 501(c)(3) nonprofit organization incorporated in the state of Minnesota. All contributions to Northwoods NETS are tax-deductible to the extent allowed by law. We thank you for your support. Northwoods NETS has partnered with Paypal to process our donations, which will appear on your credit card statement as Northwoods NETS (EIN: 81-3893802). https://www.paypal.com/donate/?hosted_button_id=VZ7W7NFT6BUWQ If you prefer to mail a […] - [Monitoring Disease](https://northwoodsnets.org/treatment-options/monitoring-disease/): There are a number of ways that patients suffering with neuroendocrine tumors and cancer have their disease diagnosed and monitored. Bloodwork The standard marker for neuroendocrine tumors is chromagranin A (sometimes abbreviated Cga). But there are a number of other markers that true neuroendocrine specialists use to help determine disease progression. These tests are things like: Serum Serotonin Neurokinin A Pancreastatin In the case of pancreatic neuroendocrine primaries, tests could include: Insulin Proinsulin Glucagon Gastrin Vasoactive Intestinal Peptide (often just called VIP) Pancreatic Polypeptide For a full list of the types of bloodwork associated with neuroendocrine tumors, please visit the […] - [PRRT Centers around the World](https://northwoodsnets.org/treatment-options/standard-treatment/prrt-centers-around-the-world/): If you are considering PRRT (Peptide Receptor Radionuclide Therapy) you know that it is still not available in the United States in 2016. We are hopeful that it will pass FDA regulation in 2017, but, even then, it may take six months or more before insurers have the codes and are no longer considering it “investigational.” If you need treatment, do not delay waiting for it’s possible FDA approval. We recommend considering medical tourism. Check this ever-growing list of centers around the world that offer this treatment. Many of these centers have been already treating patients for two decades. Australia […] - [Patient PRRT Stories](https://northwoodsnets.org/treatment-options/standard-treatment/patient-prrt-stories/): Carcinoid-Cancer.com Ed is a blogger who has detailed out his journey with Carcinoid Cancer. He recently underwent three rounds of PRRT at Houston’s MD Anderson. While this treatment is not approved in the US at the time of writing, it is allowable under the “right to try” treatments. He has posted details of his first, second and third treatments. Lucy’s Noid Blog One of the things I like best about Lucy’s blog is her discussion about PRRT and insurance coverage in the US. She is a prolific blogger and has been doing so for many years, so dig deep into her […] - [In Memory](https://northwoodsnets.org/about/meet-our-members/in-memory/): Northwoods NETS has been an active support and advocacy group in Minnesota since 1998. Over the years. we have met many wonderful people since those early days. Their lives, their stories, and their friendship have left an indelible mark on our hearts. Here is a list of our members who have crossed our paths. We are honored that we had an all-too-brief journey with them. They are gone, but, they are never forgotten. 2002Rosemary Finley – Chanhassen (our founder) 2008Ann CatalfanoWayne Kramer – ArlingtonLorraine Schweitzer – Edina 2010Ruth Ann Ylimeni – Osage 2011Kathy Pelkey – Coon RapidsMarian Clay – Edina 2012Ken […] - [Financial Support](https://northwoodsnets.org/tips/financial-support/): For many patients dealing with a neuroendocrine cancer diagnosis, the cost of paying for insurance premiums, deductibles, total out of pocket expenses and other miscellaneous expenses can be overwhelming. Here are a few resources to help you afford the care and treatment you deserve. Health Insurance If you are uninsured and need reliable, affordable healthcare, look into plans available from the ACA. Angel Flights This organization pairs patients with volunteers pilots to help patients travel for the care they need. Good Days Foundation This foundation works closely with doctors and specialty pharmacies to help patients get treatments and medications they […] - [Standard Treatment](https://northwoodsnets.org/treatment-options/standard-treatment/): Neuroendocrine tumors have a variety of treatments available. From surgical, radiologic and medical management, there are a number of treatment options. No two patients are exactly alike and throughout the course of the disease, all options should be considered. Here is a brief overview of treatment modalities.  SURGICAL OPTIONS Surgery is always the number one treatment of all neuroendocrine tumors including carcinoid if the patient is a surgical candidate. It usually involves removing as many tumors, including the primary, if possible. Frequently, these tumors are microscopic, so most treatment is considered a debulking treatment. Surgeries can be both traditional “invasive” […] - [Complementary Treatments](https://northwoodsnets.org/treatment-options/complementary-treatments/): Many neuroendocrine cancer and Carcinoid patients choose to use complementary therapies in addition to their traditional treatments to help with symptom relief and general well-being. While there is little traditional data to suggest any of these things can be curative, many of these remedies have been used for a very long time. We suggest before trying any of the treatments below that you consult your general practitioner and your oncologist. If you are lucky enough to live in an area with a naturopathic doctor that specializes with cancer patients, they would be an excellent choice to consult based on your […] - [Dr. Rodney Pommier's Octreotide Protocol for Surgery](https://northwoodsnets.org/tips/octreotide-protocol-for-surgery/dr-rodney-pommiers-octreotide-protocol-for-surgery/): Taken from an email posted on one of the online forums, the link below is a scanned copy of Dr. Pommier’s research and use of octreotide during surgery of patients with any kind of neuroendocrine tumor including carcinoid and pancreatic islet cells. Dr. Pommier – Prophylactic Octreotide to Prevent Surgical Carcinoid Syndrome – March 20, 2012. - [Dr. Eugene Woltering's Octreotide Protocol for Surgery](https://northwoodsnets.org/tips/octreotide-protocol-for-surgery/dr-eugene-wolterings-octreotide-protocol-for-surgery/): Dr. Woltering’s Octreotide Protocol: The NOLA NETS group uses this–others use less–can’t speak to their results but even with these “higher than others” type dosing we have had 2 carcinoid crisis out of about 300 OR visits– Two hours before surgery give 500 micrograms of octreotide acetate IV Push Then start a 500 microgram per hour IV infusion —– start this immediately after the IV push and continue infusion during and after surgery Depending on the severity and duration of surgery—– taper the infusion over 1-24 hours–say for colonoscopy taper over 1 hour– after huge liver cases taper over 12-24 hours If patient […] - [Dr. Thomas O'Dorisio's Octreotide Protocol for Surgery](https://northwoodsnets.org/tips/octreotide-protocol-for-surgery/dr-thomas-odorisios-octreotide-protocol-for-surgery/): If General Anesthesia is used, give the patient s.q Sandostatin (octreotide) 200 ugms followed immediately with an IV Sandostatin drip at 75 ugms per hour. Run the i.v pre-peri and for six hours after Surgery. If local or regional block anesthesia is used, Sandostatin i.v 200 ugm bolus should be on-call for any drop of Blood pressure. This can be repeated every two or three hours. Call for any questions (319-430-7669, cell). Peace, Tom O’Dorisio - [Medical ID Alert for NET Patients](https://northwoodsnets.org/tips/medical-id-alert-for-net-patients/): As NET patients are well aware, we tend to be quite complicated. It is a wise decision to wear a medical ID alert in the event that you need medical attention and are unable to speak for yourself. If you have carcinoid (or any other kind of NET) with or without syndrome, it is recommended to wear a medical alert bracelet or necklace that states not receive epinephrine, which could precipitate a carcinoid crisis. Octreotide (Sandostatin) will control carcinoid crisis. Please note, if you have an anaphylactic reaction (eg. bees, nuts, latex, etc.), you cannot avoid the administration of epinephrine, […] - [Octreotide protocol for surgery](https://northwoodsnets.org/tips/octreotide-protocol-for-surgery/): People who are dealing with neuroendocrine tumors of any kind, be it PNET or carcinoid are prone to special complications that can arise during surgical procedures, even as simple as a root canal or a colonoscopy. These complications can cause the patient to go into carcinoid crisis, a very real and life threatening situation. Below are a list of recommendations that some of the NET experts tell anesthesiologists before working on NET patients. Several of our expert doctors weigh in on their preferred protocols. Updated 2024: Dr. Rodney Pommier  First-line octreotide was ineffective in treating carcinoid crisis, necessitating vasopressors, as […] - [Living with neuroendocrine cancer](https://northwoodsnets.org/tips/living-with-neuroendocrine-cancer/): Living with neuroendocrine cancer is manageable. There are many options for maintaining a wellness plan, here are a few ideas. Special thanks to Heartland Carcinoid/NETs Support Group for their great list, which we have built upon. Exercise: is the single most important activity you can do when you have cancer. There is a lot of research suggesting that exercise can help prevent or slow down the recurrence of your cancer. You don’t have to run a marathon. No pain no gain is not the point here. Talk to your doctor for suggestions for your fitness level at this point and always listen to your […] - [Injection sites for octreotide](https://northwoodsnets.org/tips/injection-sites-for-octreotide/): If you are using octreotide for symptom control, there are several sites that you can use for injecting octreotide. Keep in mind, this is for short-acting Sandostatin (octreotide) not for long-acting Sandostatin LAR. This is a handy chart that diabetics use for injecting insulin.   - [Video Presentations](https://northwoodsnets.org/links/video-presentations/): Neuroendocrine Tumors From the Neuroendocrine Tumor Clinic at the Nebraska Medical Center discusses basic information about neuroendocrine tumors. Nebraska Medical Center’s Neuroendocrine Tumor Program Luce Case talks about the services provided at their multi-disciplinary center. Nutrition Essentials for Neuroendocrine Tumor Patients What to eat and why when living with neuroendocrine tumors. OncLive discusses the treatment regimen of PRRT Doctors Eric Liu, Matthew Kulke and James Yao discuss this important treatment option for patients suffering with progressive, non-operable neuroendocrince cancers. Targeted Radiotherapy for Neuroendocrine Tumors Dr. Richard Baum from Bad Berka Germany talks about the use of PRRT (Peptide Receptor Radioneuclide Therapy) […] - [Promotional Flyers](https://northwoodsnets.org/about/promotional-flyers/): Northwoods NETS Support Group Northwoods NETS Flyer (PDF – non-editable) | Northwoods NETS Flyer (Word – editable) Northwoods NETS NET Cancer Day 2013 NET Cancer Day – Bridge – Flyer (PDF)   - [Northwoods NETS Newsletter Archive](https://northwoodsnets.org/northwoods-nets-newsletter-archive/): Visit our past newsletters for bits of news and information. (Sorry, this is large and can take a moment to load. Please be patient, the archive is large.) - [Symptoms associated with neuroendocrine tumors that are not carcinoid](https://northwoodsnets.org/newly-diagnosed/symptoms-associated-with-neuroendocrine-tumors-that-are-not-carcinoid/): For neuroendocrine tumor patients that are not Carcinoid (which means, their tumors secrete serotonin), there are a variations of symptoms based on the types of hormones your tumor can overproduce. Generally speaking, these are tumors that are caused from Pancreatic Neuroendocrine Tumors, also called Islet Cell Tumors but also lung, pituitary and adrenal glands. These are a few of the hormones that they overproduce and the symptoms. Insulinomas These can occur in any part of the pancreas. The pancreas produces insulin, which controls the level of sugar in the blood. In people with an insulinoma, the tumour produces an abnormally […] - [Member Profile: Jan Jackson](https://northwoodsnets.org/about/meet-our-members/member-profile-jan-jackson/): Name: Jan Jackson Location: Eagan, Minnesota Diagnosis: December 2000 – midgut carcinoid Doctors I would recommend: (Specialist) The University of Iowa Neuroendocrine Tumor Program My Story: For most of my life I’ve had weird problems.  When I was nine years old, I had an appendectomy.  As a teen-ager I had thyroid problems and major distress whenever I had a menstrual period.  At 20, I had hepatitis A and spent the whole summer in the hospital or at home, in bed. Still, I always thought of myself as healthy.  As the years went on, there were strange bowel problems, too.  I had […] - [Member Profile: Dawn Marie](https://northwoodsnets.org/about/meet-our-members/member-profile-dawn-marie/): Name: Dawn Marie Location: Minneapolis, MN Email: [hide_email dawnmarie@northwoodsnets.org] Facebook: facebook.com/dawnmariepeterson TikTok: soulsaw PRRT Blog: northwoodsnets.org/category/patient-profiles/prrt-me/ GoFundMe page: Dawn Marie’s NET Cancer Fund Date of Diagnosis: October 23, 2007 Diagnosis: Islet Cell Tumor, Pancreatic Neuroendocrine Carcinoma, PNET Tips: Trust your instincts. Find the right team of doctors to work FOR you. And most importantly, speak your truth. Doctors I would recommend: John Seng (Local Oncologist) Minnesota Oncology (Specialist) The University of Iowa Neuroendocrine Tumor Program James Howe (Neuroendocrine Surgeon) Joseph Dillon (Endocrinologist) Chandrikha Chandrasekharan (Oncologist) John Lake (Hepatologist) University of Minnesota My Story:  In 2007, I became very ill. Anemia. Huge isolated gastric varices, normal liver biopsies, […] - [Meet Our Members](https://northwoodsnets.org/about/meet-our-members/): Northwoods NETS would like to introduce you to some of our members that participate in our support group. Name: Jan Jackson Location: Eagan, MN Diagnosis: Carcinoid, mid-gut Read more about Jan…   Name: Dawn Marie Location: Minneapolis, MN Date of Diagnosis: October 23, 2007 Diagnosis: Islet Cell Tumor, Pancreatic Neuroendocrine Carcinoma Read more about Dawn Marie… If you would like to participate in our patient forum, please download our Northwoods NETS Patient Profile Questionaire, complete and email to [hide_email jan@northwoodsnets.org] or [hide_email dawnmarie@northwoodsnets.org]. - [Dietary Guidelines for Carcinoid and Neuroendocrine Tumors](https://northwoodsnets.org/newly-diagnosed/dietary-guidelines-for-carcinoid-and-neuroendocrine-tumors/): There are some very basic guidelines for proper eating for those managing symptoms, (eg. specifically diarrhea, gas & bloating and flushing) related to Carcinoid and other Neuroendocrine Tumors. These Guidelines were developed by Miles Hassell MD, Medical Director, Department of Integrative Medicine, Providence Cancer Center along with Monica E Warner, M.S., R.D., C.D.N., Carcinoid Cancer Foundation. Dietary Guidelines For Carcinoid and other Neuroendocrine Tumors If no symptoms or other medical problems: Follow whole food Mediterranean diet or American Institute Cancer Research (AICR) guidelines Daily exercise habit Portion and weight control Adequate sleep If One Or More Symptoms Of Carcinoid Syndrome: Mediterranean or AICR diet, avoiding foods that aggravate […] - [Jazzy Zebra](https://northwoodsnets.org/links/jazzy-zebra/): The Jazzy Zebra is a publication that is produced by the Neuroendocrine Program at Ochsner Medical Center – Kenner, Louisiana and sent out periodically to patients living with neuroendocrine cancers including carcinoid, islet cell tumors and more. This is an archive of the last several years. A special thank you to Dr. Woltering’s team for creating this patient-friendly newsletter. Jazzy Zebra – April 2012 Jazzy Zebra – June 2012 Jazzy Zebra – October 2012 Jazzy Zebra – Winter 2013 Jazzy Zebra – Spring 2013 Jazzy Zebra – October 2013 - [NETS in the News](https://northwoodsnets.org/about/nets-in-the-news/): Below are links to articles written by some of our members of Northwoods NETS. We are proud that our members are both educated and active in spreading awareness about our disease. Day helps focus awareness of NET Cancer LaVonne Levar wrote this thoughtful piece that appeared in the Duluth News Tribune. Governor aids woman’s awareness campaign Lisa Fontanna talks about her experience with Governor Dayton to sign the Proclamation for NET Cancer Day 2012. 35W Bridge to go “zebra” for NET Cancer Day A short blog piece from Star Tribune. - [NET Cancer & Carcinoid Patient Blogs](https://northwoodsnets.org/links/neuroendocrine-cancer-carcinoid-patient-blogs/): The Carcinoid and Neuorendocrine Cancer patients are amazing and proactive. A number of them have blog sites, which are always nice to follow other patients treatment plans. Here are a few that we are aware of. If you know of others, please drop us an email! Beth’s Adventures with Carcinoid CancerAn overview of Beth’s journey dealing with a rare cancer. She was diagnosed in 2010. Channeling Jackie-OMarlena chronicles her day to day life and living with carcinoid cancer in her blog. I Am A LiverLindsey’s blog is inspirational. This young woman was diagnosed with pancreatic neuroendocrine cancer at the age […] - [Comprehensive Information Sites](https://northwoodsnets.org/links/comprehensive-information-sites/): The links below are great places to visit for both the newly diagnosed and the for those wanting to keep up to date on the latest treatments available.  Carcinoid Cancer Foundation The oldest organization in the U.S. that supports education and research into these rare cancers. Carcinoid Cancer Awareness Network Providing support and information for NET cancer patients and caregivers. This group helps to organize educational conferences around the U.S. Carcinoid Link A comprehensive information site by Novartis, one of the pharmaceutical companies that makes Sandostatin, a drug that is frequently prescribed to NET patients. Caring for Carcinoid Foundation This is […] - [What you need to know about Neuroendocrine Tumors & Carcinoid Cancer](https://northwoodsnets.org/newly-diagnosed/what-you-need-to-know-about-neuroendocrine-tumors-carcinoid-cancer/): Neuroendocrine cancer is a rare cancer affecting only 125,000 patients in the United States, about five in 100,000 cases are diagnosed in a year.  Neuroendocrine cancer is frequently misdiagnosed as common illnesses such as IBS, Chron’s, asthma and even the effects of menopause.  It has the unfortunate legacy of originally being known as a benign “cancer-like” disease because it tends to be slow growing.  Patients can go months, or even years, before receiving a proper diagnosis, resulting in disease spread.  Pancreatic neuroendocrine cancer is the same cancer that Apple executive, Steve Jobs, was first diagnosed with in 2003 and eventually […] - [What is Carcinoid Syndrome?](https://northwoodsnets.org/newly-diagnosed/what-is-carcinoid-syndrome/): Carcinoid Syndrome is caused by carcinoid tumors that most commonly arise in the mucosa of the gastrointestinal tract. Carcinoid syndrome is the set of symptoms that may occur in patients who have carcinoid tumors. Not all people with carcinoid tumors have carcinoid syndrome. The syndrome occurs when carcinoid tumors overproduce substances such as serotonin that normally circulate throughout your body. This overproduction of serotonin and other hormones is what causes the symptoms of carcinoid syndrome. Carcinoid tumors may arise in many locations, but they are most commonly found in the gastrointestinal tract or the lungs. Other (non-carcinoid) tumors can also cause […] - [What is Carcinoid Crisis?](https://northwoodsnets.org/newly-diagnosed/what-is-carcinoid-crisis/): Carcinoid crisis is the immediate onset of  debilitating and life-threatening symptoms that are associated with carcinoid syndrome. It can occur spontaneously or be precipitated by the Five E’s. Symptoms include prolonged severe flushing, diarrhea, hypotension, tachycardia severe dyspnea, peripheral cyanosis and sometimes hemodynamic instability. Other very serious conditions include: Tahycardia: heart beating to fast Severe Dyspnea: Shortness of breath Peripheral Cyanosis: Lack of oxygen in the blood causing a bluish discoloration of the skin Hemodynamic Instability: Circulatory Shock or Advanced Heart Failure - [The Five E's of Carcinoid & Neuroendocrine Cancers](https://northwoodsnets.org/newly-diagnosed/the-five-es-of-carcinoid-and-neuroendocrine-cancers/): There are certain activities and situations that can trigger carcinoid syndrome, the worst case scenario being carcinoid crisis. Each person is different and one person’s trigger may not affect another’s. It’s wise to take note if certain foods or activities cause carcinoid symptoms to act up. In some cases it can be a combination of triggers that can cause a reaction. Keep a log book of foods, activities and medications if you are trying to find potential causes. Below are the five E’s: Epinephrine This medication which is commonly found in over the counter allergy and cold medications can be one of […] - [Other Resources](https://northwoodsnets.org/links/other-resources/): Living with cancer can seem like an overwhelming prospect, but there are many organizations providing services that strive to make your journey easier. Minnesota Specific Resources Cleaning Up for Cancer If you are located in the seven county Metro of Minneapolis-St. Paul, this organization can help. They are supported entirely by corporate and private donations along with grants, currently allowing two cleanings per patient. Pathways Minneapolis Pathways’ mission is to provide resources and services for people with life-threatening illness to explore and experience complementary healing approaches. Minnesota Angel Foundation The Angel Foundation helps cancer patients with financial assistance to pay […] - [Tips](https://northwoodsnets.org/tips/): Living with neuroendocrine cancer Tips for healthy living and well-being with neuroendocrine and carcinoid cancer. Injection sites for short-acting octreotide If you need a bump of short-acting octreotide, outside of your normal Sandostatin LAR shot, this page shows a handy chart to make it easier to rotate your injection sites. Medical ID Bracelets Looking for information about what carcinoid and neuroendocrine (NET) cancer patients should put on their medical ID bracelets? Check out our helpful guide. Medication Costs If trying to afford your prescription medication is out of control, check out some of our links to assistance patients with lower-cost […] - [Treatment & Diagnosis](https://northwoodsnets.org/treatment-options/): As patients living with neuroendocrine tumors and carcinoid cancers, we have different options to choose from. The pages below explore some of the options we have, living with a rare cancer. Monitoring Disease There are a number of ways that neuroendocrine tumors are monitored through imaging and bloodwork. Standard Treatment Options First line treatment options or standard treatment options for all neuroendocrine cancers including Carcinoid. Complementary Treatment Options These are treatment options that many patients choose to explore along with their medical team and other wellness professionals such as naturopaths and acupuncturists. - [Recommended Specialists](https://northwoodsnets.org/links/recommended-specialists/): Below is a list of some of the doctors that Northwoods NETS members have consulted with. They are doctors that are relatively close to us geographically, but there are also other specialists in the U.S. Dr. Joseph Dillon Practicing at the University of Iowa, this specialist is geographically the nearest to us, so many of the Minnesota patients travel to see him. He is an endocrinologist that specializes in this rare cancer and works very closely with other experts at UI and our local oncologists. Dr. Eric Liu – Rocky Mountain Cancer Center Recently moving to Colorado, Dr. Eric Liu focuses […] - [Support Groups](https://northwoodsnets.org/links/support-groups/): CNETs Canada – Carcinoid Neuroendocrine Tumor Society of Canada Hosting a variety of conferences throughout Canada, this is a very pro-active and friendly group. They also have an online mailing list. PNET Support Community Inspire is a support community that is supported by many groups. It’s a good place to ask questions and connect with other PNET patients. Smart Patients A new community created by Carcinoid Cancer Foundation, the oldest neuroendocrine organization in the U.S. Support Groups Worldwide The Carcinoid Cancer Foundation is the oldest in the U.S. and maintains a large database of information. They have a very comprehensive […] - [Welcome](https://northwoodsnets.org/): Have you or a loved one been diagnosed with carcinoid cancer, MEN-1 or another kind of a neuroendocrine tumor and are looking for more information? We are a diverse and proactive group whose mission is to support a high quality of life for neuroendocrine cancer survivors and caregivers in the Twin Cities metro of Minneapolis and St. Paul. You will find more resources and information about neuroendocrine cancers in our group than in any general cancer support group in the Twin Cities. We offer monthly support meetings both in person and on Zoom. See our Support Sundays link under our events […] - [Links](https://northwoodsnets.org/links/): These are links to other sites that provide a wealth of medical information about Carcinoid and Neuroendocrine Cancers. Comprehensive Information Sites Great for both the newly diagnosed and those wishing to find out the latest in treatment options. Recommended Specialists These are specialists and centers that are regionally close to the Northwood NETS. Support Groups A list of online and other support groups in North America. Treatment Options There are a variety of options available for treatment for Carcinoid and other Neuroendocrine Tumors. Other Resources This is a list of organizations that provide services to cancer patients to help them […] - [Newly diagnosed](https://northwoodsnets.org/newly-diagnosed/): Checklist for the Newly Diagnosed This is a great list from the Carcinoid Cancer Foundation that all NET & Carcinoid patients need to review. Neuroendocrine Tumours Reference Guide for Patients and Families Developed by the Carcinoid Neuroendocrine Tumour Society of Canada, this patient-friendly handbook was developed to provide you with information and support as you confront and adapt to a neuroendocrine tumour (NET) diagnosis What you need to know about neuroendocrine tumors and carcinoid cancer A primer written by Dawn Marie of Northwoods NETS. The Five E’s Things to be aware of to avoid symptoms of your disease. What is Carcinoid Syndrome? Symptoms […] - [About Us](https://northwoodsnets.org/about/): Formed in 1999, Northwoods NETS is a patient support and advocacy group for those living with neuroendocrine tumor cancers including Carcinoid, Islet Cell, and MEN-1. While based in the Twin Cities, Northwoods NETS provides support, information, and awareness for patients and caregivers all over Minnesota, North and South Dakota and western Wisconsin. We currently meet monthly via Zoom every third Sunday in a month. See our events sidebar with a list of current dates. Northwoods NETS is Non-Profit Organization in the State of Minnesota with 501(c)3 status. Our EIN is: 81-3893802. You might be asking yourself, “what’s up with the zebras?” Neuroendocrine […] ## Optional - [Agent (MCP protocol)](websites-agents.hostinger.com/northwoodsnets.org/mcp) [comment]: # (Generated by Hostinger Tools Plugin)