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Northwoods NETS – Minnesota Carcinoid & Neuroendocrine Cancer Support Group - 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...

  • Treatment & Diagnosis – Northwoods NETS - 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 – Northwoods NETS - 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).
  • Standard Treatment – Northwoods NETS - 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.
  • Complementary Treatments – Northwoods NETS - 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.
  • Newly diagnosed – Northwoods NETS - 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...
  • What you need to know about Neuroendocrine Tumors & Carcinoid Cancer – Northwoods NETS - 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.
  • What is Carcinoid Syndrome? – Northwoods NETS - 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.
  • What is Carcinoid Crisis? – Northwoods NETS - 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.
  • The Five E’s of Carcinoid & Neuroendocrine Cancers – Northwoods NETS - 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.
  • Symptoms associated with neuroendocrine tumors that are not carcinoid – Northwoods NETS - 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.
  • Dietary Guidelines for Carcinoid and Neuroendocrine Tumors – Northwoods NETS - 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.
  • Tips – Northwoods NETS - 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 t...
  • Living with neuroendocrine cancer – Northwoods NETS - 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.
  • Octreotide protocol for surgery – Northwoods NETS - 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.
  • Dr. Eugene Woltering’s Octreotide Protocol for Surgery – Northwoods NETS - 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 Pu...
  • Dr. Rodney Pommier’s Octreotide Protocol for Surgery – Northwoods NETS - 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.
  • Dr. Thomas O’Dorisio’s Octreotide Protocol for Surgery – Northwoods NETS - 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.
  • Injection sites for octreotide – Northwoods NETS - 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.
  • Medical ID Alert for NET Patients – Northwoods NETS - 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.
  • Links – Northwoods NETS - 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.
  • Northwoods NETS Newsletter Archive – Northwoods NETS - Visit our past newsletters for bits of news and information.   Sign up for our monthly newsletter!  * indicates required Email Address * Full Name *...
  • NETS in the News – Northwoods NETS - 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.
  • Comprehensive Information Sites – Northwoods NETS - 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.
  • Support Groups – Northwoods NETS - ACOR - Carcinoid This is a very active mailing list that has participation from experts in the treatment of Carcinoid and other Neuroendocrine Cancers.
  • NET Cancer & Carcinoid Patient Blogs – Northwoods NETS - 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.
  • Video Presentations – Northwoods NETS - 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.
  • Financial Support – Northwoods NETS - 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.
  • Jazzy Zebra – Northwoods NETS - 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.

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