NET Resources

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Programs in NET Cancer and Carcinoid tumors

Some cancer centers have established specific programs aimed at research and treatment of NET cancer and Carcinoid tumors. There are also doctors with more experience in dealing with NET cancer than others. A link to the Carcinoid Cancer Foundation‘s list of individual doctors is also in this section.

Walking with Jane makes no claims with regard to the performance of any of these programs. We endorse no doctor or program and nothing here should be taken as a recommendation of a specific doctor, program, or treatment. Treatment decisions are for you to decide in consultation with your doctor. We merely try to provide the best information we can find. Remember, the author is not a doctor and does not claim to be.

Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute

Located in Boston, Massachusetts. This program is under the direction of Dr. Matthew Kulke. He and his group were responsible for the first new drugs in 20 years approved by the FDA to treat NET cancer. This program is supported, in small part, by the Walking with Jane Dybowski Fund for Neuroendocrine Cancer.

Neuroendocrine Tumor Program at Ochsner Medical Center

Affiliated with LSU in Kenner, LA, this is one of the premier research centers for NET cancer and carcinoid syndrome.

Mount Sinai Hospital Center for Carcinoid and Neuroendocrine Tumors

Home of the father of NET cancer and carcinoid research, Dr. Richard Warner, this is perhaps the oldest program in the US with a focus on NET cancer.

Johns Hopkins Medicine Liver Tumor Center

Johns Hopkins has made some important discoveries recently about NET cancer.

Vanderbilt-Ingram Cancer Center Carcinoid Tumors Team

Located in Nashville, TN, this is another NCI institute, as are most of the other institutions listed here. They have a number of ongoing trials.

H. Lee Moffitt Cancer Center & Research Institute 

Located in Tampa, FL, Moffitt is one of the NCI National Institutes for cancer treatment and research.

Carcinoid and Neuroendocrine Tumor Program at Cedars-Sinai

Located in Los Angeles, California, this program is under the direction of  Dr. Run Yu. He has solid NET cancer credentials.

M.D. Anderson Cancer Center

Located in Houston, Texas–and with a number of satellite campuses–M.D. Anderson is involved with the PRRT trials and is looking at the molecular basis of NET cancers.

The Nebraska Medical Center Treatment and Research

These folks are at the center of liver re-sectioning research and treatment for NET cancer metastases.

Neuroendocrine Tumor Center at Mercy Medical

This center is located in Baltimore, Maryland. It is headed by  Dr. Sanjay Jagannath, one of the leaders in pancreatic NET cancer research and treatment.

University of Kentucky Carcinoid and Neuroendocrine Cancer Team

This is the new home of Dr. Edward Wolin, who was formerly at Cedar-Sinai in California.

Memorial Sloan-Kettering Cancer Center

Located in New York, Memorial Sloan-Kettering authors some interesting research as well as treating carcinoid/NETs patients.

Individual doctors with experience with NET cancers

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Support Groups

NET Cancer Support Groups

ALL4NETS listings for support groups

Includes an extensive list of online as well as physical support groups.

Caring for Carcinoid Foundation Listings for support groups

Their list is shorter than the other two.

Carcinoid Cancer Foundation listings for support groups

The most extensive listings of the three. They also have extensive commentaries on the majority of the groups they have posted.

Pheo paratroopers

This is a support group for pheochromocytoma, a particular type of NET that has an impact on blood pressure.

New England Carcinoid Connection

Meets monthly. They ran an excellent patient conference in June.

Navigating Cancer and Blood Disorders pNET  Group

This group was created October 5, 2012. It is attempting to set up an online support group.

The following support groups exist on Facebook.

I have personally looked at all of these and found them potentially very useful for patients and their families. They are private groups and can only be joined by people with carcinoid/NETs and caregivers.

Carcinoid Cancer Awareness Network

Carcinoid Coffee Cafe 

Carcinoid Neuroendocrine Cancer Awareness

Zebra Zone–this is a private group. You can join it by contacting the page administrator, Katie Adams, by pm on Facebook.

ZEBRA Awareness Global NETS

Lovable Lungnoids

This last group is specifically for people with Carcinoid/NETs lung cancer 

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NET Cancer Foundations

This is the oldest of the other organizations I know about working on neuroendocrine cancer, neuroendocrine tumors, and carcinoid syndrome. In addition to information on this form of cancer, they also provide links to support groups for patients and caregivers and sponsor some conferences aimed at a lay audience. The founder here is a doctor who is one of the leading experts on the disease. They have been very good about helping me think through what the purpose of Walking with Jane needs to be.

The founder of this organization is a lawyer who discovered she had NEC only after she collapsed in the subway. Because they are located in Boston I have spent more time with them than the other two foundations. Their site has good information about the disease and blogs from both their founder and their director. Thanks to the generosity of their founder and their board of directors, all the money they raise goes directly into research. They participate in a wide range of walks and runs across the country. They have raised about $6 million since their founding. They send out a regular newsletter by email. This group has also been very good about  providing advice and encouragement as I have worked to set up Walking with Jane.

I particularly like their motto, “If you don’t suspect it, you can’t detect it.” They were founded in 2003. According to their website they came up with the zebra bracelets and stuffed animals as a symbol of the disease based on a version of a quote I first heard from Jane’s cardiac surgeon the night before she died: “We spend years teaching young doctors that when you hear hoofbeats you shouldn’t look for zebras. A zebra killed your wife.” They also offer help in finding support groups.

This group is sponsored by Novartis. They have a wide range of videos and information on NEC and CS. They also offer links to support groups, videos of people who are living with the disease, and NEC fundamentals.

North American Neuroendocrine Tumor Society

NANETS sponsors and organizes continuing medical education programs for medical personnel dealing with neuroendocrine tumors and carcinoid syndrome. They are sponsoring a major conference in Minneapolis later this fall that will include researchers and doctors from 17 different countries. A paper on some new research that has not yet been published will be presented there. This is an A List conference that reads like a who’s who in the NET universe.

One Inning at a Time Foundation

Hap Rowan has been fighting NET cancer since 2008. He and his wife launched a foundation in New Jersey in 2012 to seek funding and raise awareness about NET cancer. This links to the group’s Facebook page.

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NET Cancer Blogs

Ronny Allan

Ronny is from the UK. Some of his posts will be shared directly on starting January, 2015.

Beth’s Adventures with Cancer

Beth writes about her experiences with NET Cancer. She recently had surgery–and her detailed account is truly powerful.

Sunny Carney Carcinoid Cancer Fund

Sunny Carney died in early November of 2012. She was a woman in Pittsburgh, PA who regularly chronicled her experiences with NET cancer as a patient. Her husband also sometimes posted on her efforts when she was having treatments at some remote location. She was very good about detailing her experiences with various treatments. Her blog remains online–and I maintain this link in her memory. If her family closes the blog I will discontinue the link.

Channeling Jackie-O

I like this woman for her direct, blunt style. She is in the midst of the battle and does not sugar coat how she feels. One of her recent posts links to US News and World Report’s article on how to choose your doctor–and then matches up the latest doctor her insurance company will let her see with one of the things on the list.


Lucy Wiley’s most recent blogs, as I write, include a video of how to mix blackberry powder–an  aid for controlling diarrhea in carcinoid syndrome patients–and a piece on the problems with medical care in the US. Those of you who have heard me screaming about the need for a national health program in the US will enjoy–I hope–her perspective on te issue.

I have cancer and I’ve never felt better

Tracy Krulik has a wickedly beautiful sense of humor that makes her blog a fun read. If you are having a bad day, this is a place to go. It is also chock-full of good information.

I am a liver

If you’ve ever wondered about what it would be young–mid-20s in this case–and be faced with cancer, Lindsey Miller will get you to see it. This was a tough kid who reminds me a lot of Jane at times. She died in 2014.

Ann Can

Ann was diagnosed in early 2012 and was admitted to the PRRT trial going on in Texas. She gives a detailed description of her treatment there, then contrasts it with a trip to Germany for a similar treatment later in the year. That Europe is miles ahead of us in healthcare–especially in NET is immediately apparent. She does not post often–only when she has a treatment to talk about–but a visit is well worth the time.

Brian’s Carcinoid Battle

Brian was diagnosed in 2005 after nearly five years of doctor visits and tests. He is also enrolled in the PRRT trial in Houston. His story is grippingly told.

Brent Danly

Brent wrote this post on the day his wife was diagnosed with NET cancer that had metastasized to her liver. The post–and the replies to it–remind me very much of what Jane and I went through right after her diagnosis.

Scott Kropman

Scott was diagnosed with NET cancer in his bones in late 2012. He is a wrestling coach in New York state whose attitude reminds me enormously of Jane’s. His blog narrates his treatments as he faces the disease.

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NET Cancer Video Resources

NET Cancer Basic Information

Kjell Öberg, MD: Neuroendocrine Tumors

Suggests that if you suspect a neuroendocrine tumor a Chromagranin A test is the place to start. Once you see an elevated Chromagranin A level you start looking for elevated hormone and peptide levels to find the tumor and its type.

Presentation at Medical conference on Uppsala Oncolytic Virus

Part 1–The body of the talk

Part 2–The Q&A

Kjell Oberg’s November 2012 talk on oncolytic viruses indicates we have two viral vectors in hand that may offer a cure for NET cancers.

This short promotional video from Novartis does a good job of explaining some of the basics about NET cancer. It does not hit very much on actual treatment, but does highlight some of the difficulties we face.

primer on neuroendocrine cancer

This is from the Stanford Patient Education Conference sponsored by Caring for Carcinoid Foundation. It is a good basic explanation of neuroendocrine cancer.

NET Alliance video series on neuroendocrine cancer

This very professional series of videos will walk you through the basics of neuroendocrine cancer–from what it is to what it is confused with to how it is diagnosed to how it is treated. Each video treats a different aspect of the disease. If you don’t have a lot of time, you can look at just one at a time. A very good and useful series.

NET Alliance Intro Video

There is not much humor in this business of NET cancer, but this video from the NET cancer Alliance gives some good information with a film noir twist.

NET Cancer Patient Conference Individual Sessions

Surgery for neuroendocrine tumors

This is an excellent video of one section of the New Jersey Carcinoid Cancer Network  conference on November 10, 2011. The link also connects to other presentations at that patient conference.

Possible use of laparoscopic surgery for liver and pancreatic NETs

This presentation at the Stanford Patient Education Conference on September 10 discusses the possibility of using laparoscopic surgery for NETs in the liver and pancreas. This type of operation has not yet been used on NETs but is under active consideration. It shows an actual laparoscopic operation on the pancreas for another issue.

Traditional open surgeries on NETs including liver metastases

This presentation at the Stanford patient education conference talks about more traditional surgical interventions for NETs and includes statistics on longterm survival as a result of surgery.

panel discussion on the psychosocial impact

This is a panel from the Stanford Patient Education Conference on September 10, 2011. It discusses the psychological and social impacts of NEC. The panel is made up largely of patients, but includes two social workers and some comments from the audience.

Full Patient Conferences


at Penn Medical sponsored by Caring for Carcinoid Foundation

This link takes you to the Focus On Neuroendocrine Cancer Conference in Philadelphia on September 16, 2011. You can view the entire conference sponsored by Penn Medicine and the Caring for Carcinoid Foundation or look at the slides from the various presentations. The presentations are geared to a wide audience and include one by a patient about how to become a barking zebra.

Other NET Cancer Videos

Update on somastatin analogs and tumor progression

This gives an overview of current research on Octreotide and Pasireotide and their impact on not only symptoms but tumor progression. It also outlines future trials of both somastatin analogs in combination with mTOR inhibitors. While its primary audience is medical folks, it is pretty clear for laypeople as well.

Woman cured through PRRT and surgery

This 2112 news story from Australia claims a combination of the experimental PRRT therapy has cured a case of pNET in a 47- year-old woman.

Robotic Resection of thymoma and neuroendocrine tumors

The resection of the neuroendocrine tumors starts about 10:40 in but even the first 10 minutes are fascinating viewing. Unfortunately, the sound quality is pretty poor. There is a lot of echo in the description. However, the video showcases the power of robotic surgery beautifully. That alone makes the 15 minutes or so worthwhile.

Commentary on Steve Jobs’ death

This is a link to a video commentary on the death of Steve Jobs by Dr. John Marshall on MedScape. He makes some interesting points.

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NET Cancer Basic Reading Resources

Basic Information about NECs, NETs, and CS

A good FAQ on NET cancer

This provides a good print explanation of NET cancer for a lay audience. It was written for a press syndicate for use on NET Cancer Awareness Day.

Pancreatic Neuroendocrine Tumors (PNETs)

This is an excellent primer for both medical people and patients on pancreatic NET cancer. It covers everything from symptoms to treatment options and prognosis. It is from the LSU School of Medicine, one of the leaders in NET cancer research.

Questions to ask your oncologist if you have NET cancer.

This is a quick and easy intro to NET cancer, the most important part of which is a list of questions patients should ask their doctors. The site says it is not intended for US residents but the questions are exactly the ones you need to ask regardless where you are. However, some of the rest has a heavy commercial taste to it.

Caregiving advice from an expert

In our worrying about the patient we often forget there is at least one lay caregiver involved. This piece is for the caregiver about taking care of the caregiver. Regardless of whether you are facing NET cancer or some other cancer, this advice is important.

Neuroendocrine Tumor Cancer Symptoms

This is a pretty exhaustive list of symptoms covering three different forms of NET cancer. It goes beyond the list in out Is it IBS? Or is it NET? pamphlet/article that was designed to focus on that one aspect of the disease.

The Basics of NET Cancer

This is a well-written basic explanation of NET cancer by It includes the list of symptoms above, but goes into much more detail about the different forms of the disease than most sources I have read. I would read this as soon after diagnosis as possible. I would even recommend it to primary care physicians encountering the disease for the first time. I want to underline, however, what they say about survival statistics not always being an accurate reflection of reality.

This is a good basic primer in layman’s terms on neuroendocrine cancer. If you are newly diagnosed or think you may have the disease, this article and the next one are good places to start educating yourself on NEC and Carcinoid Syndrome.

The second good primer on NEC written in layman’s terms. Reading this and the link directly above will give you a clearer idea of what this disease is and how it works.

The Mayo Clinic offers a very easy to read series of pages on all the different types of neuroendocrine tumors. The page is very readable for patients and their friends and families.

The Dana-Farber Cancer Institute is where Jane went for treatment. It is ranked as the top cancer treatment facility in New England and fifth in the country. This link is to their pages on neuroendocrine tumors. While the language is fairly technical at times, it does give a good background to the subject. They currently have a section on research being done into this disease at Dana-Farber that is under development.

Book on NET published in 2011

This takes you to Chapter 7 of a book on neuroendocrine tumors. From there you can move around through the book to other chapters. The book came out just this year and provides 245 pages worth of information on this form of cancer. Each chapter is written by people who are in the field treating and doing research on this disease. While it does get a little dense in places, if you really want to understand the disease, this text is a good place to start. Just be forewarned that it is aimed at doctors and researchers, not caregivers and patients. But I found the sections I looked at to be very readable and not that much of a struggle to get through.

Is NET more common than we think?

It is one thing when I speculate on the idea that NET may be more commonplace than we think. But when a doctor who studies the same thing says it, maybe more people will listen. This researcher says that one percent of autopsies uncover NETS that had not been previously discovered.

New treatment for NET studied

sciencenewsline has this article on a recent Dutch study of PRRT. I have posted one article on this in the medical section below, as well as a link to the original publication, but this article is a bit more accessible to laypeople.

Introduction to Neuroendocrine tumors

While this article is not particularly well-written, it does include, in one place, a decent overview of the current treatments.

A warning about non-traditional treatments

I do not have much use for those who believe that just the right diet will cure cancer. While there is plenty of support for diet and exercise having a role in preventing cancer, there is little scientific evidence for curative properties of such things. This article does as good a job as any I have seen at debunking the idea of “non-traditional” treatments. Do not misunderstand me here. If there is scientific evidence for something, I think one pursues it. But the evidence has to be more than someone’s opinion based on what they believe rather than on concrete evidence.

New and Ongoing Research on NET Cancer

CSHL’s Dr. David Tuveson receives grant from The Caring for Carcinoid Foundation

The grant will enable Tuveson to continue his work on developing an animal model for NET cancer.

Swedes may have cure for NET cancer

A researcher in Sweden may have a cure for NET cancer sitting in his freezer. Unfortunately, he can’t find the $1.6 million needed to begin human trials on the virus that “eats” NET cancer cells.

New somastatin analog shows promise in Phase II trial

This new drug hits four somastatin receptors rather than the two octreotide LAR does. A Phase III trial is underway at multiple sites in the US and Europe.

Chemo combo promising for pancreatic neuroendocrine tumors

A layman’s summary of Jennifer Chan’s most recent study.

Researcher works on personalized medicine for NET patients

This work is funded through a fundraiser run by the Caring for Carcinoid Foundation.

Pancreatic Neuroendocrine Cancer

Two drug therapy shows promise for NET patients

Phase II trial of combination of temozolomide and bevacizumab created a progression free survival median of 14.3 months.

Pancreatic Neuroendocrine Cancer

Symptoms and treatments for pancreatic NETs

This article does an excellent job of explaining the different symptoms of pancreatic NETs and explaining the basic treatment options.

Pancreatic Neuroendocrine cancer basics

This may be the best general article on NEC that I have seen so far. While the focus is on a person with the pancreatic version of NEC that Steve Jobs had, the article does a really good job of pointing out how quickly this disease is growing–and distinguishing it from the erroneous idea that this is just another form of pancreatic cancer. It also makes clear that this cancer can appear anywhere–and is not limited to a specific organ. We need more articles that are this good.

What are islet cell neuroendocrine tumors of the pancreas?

This article, written by a nurse, does a good job of putting into layman’s terms the basics of pancreatic neuroendocrine tumors.

A good primer on pancreatic NET islet cells

Yahoo has a good basic piece on the NET cancer that killed Steve Jobs.

Harvard Health Letters details pNET and  current thinking

The Harvard Health Letters does a good job of explaining pNET and the current thoughts on treatment while making frequent references to Steve Jobs case in particular. Dana-Farber’s Matt Kulke is quoted in the article.

Article on the different types of NETs that form in the pancreas

This is a pretty straight forward article on the different kinds neuroendocrine tumors that can form in the pancreas. Each one produces a different substance which can further complicate diagnosis.

Difference between pNET and pancreatic cancer explained

This is a good explanation of the differences between pNET and pancreatic cancer.

Two faces of pancreatic cancer

This is another good explanation of the difference between pNET and pancreatic cancer.

NET Cancer and Prostate Cancer

Targeting NETs of the prostate

This piece on NETs of the prostate and a new potential treatment for that form of the disease gives some background on both in layman’s terms.

NET Cancer Patient Stories

Penfield Youth Wrestling Coach Begins Bout With Cancer

This story is both a video and a written news story on a coach in New York with extensive NET cancer in his bones. He also has a blog that I have posted in the blog section.

Several walks scheduled for Canada this weekend

This is a major weekend for NET cancer patients in the Toronto area. Two individual stories are told here–both very moving.

This zebra ready to fight cancer
This woman was told she had Crohn’s. Then she needed an appendectomy–and there was an NET.

pNet diagnosis: The Rollercoaster ride of one patient 

You feel sick. You go to the hospital. They find multiple tumors–neuroendocrine tumors.

Monica Grundmann Dedicates Championship Ride to Carcinoid Cancer Awareness
This NET patient won a 25 mile trail ride competition

What are the odds both halves of a couple have NET?

She was diagnosed three years ago. Now he has been diagnosed as well.

Teen copes with mother’s cancer

This story from website looks at NET from a very different perspective–that of the patient’s daughter.

Woman discovers NET after pregnancy

There were multiple tumors, but they have removed most of them–and her prognosis is better than it was.

CCF has group of survivor stories

The Carcinoid Cancer Foundation has a long list of happy outcome stories for the holiday season.

Tommie Gordon: My battle with the cancer that killed Steve Jobs

This is a truly uplifting story about an Irish newsman who has been fighting pNET since the mid-’90s. It brought tears to my eyes–and may be exactly what you need at this point if you have just been diagnosed.

Another reflection on Jobs’ death

This piece from the Albuquerque Journal talks about the columnist’s sister who died from the same form of NET as Steve Jobs.

Woman fighting NET can’t get help

And then there are stories like this one that annoy me to death. This woman wants to do a fundraiser but can get no backing from the major cancer foundations in Canada because there are not enough cases to make it worth their while–but that is just me reading between the lines.

Raising awareness–even with money–not easy

This article is about a woman who has NET in her digestive system and is trying to raise awareness about NET.

Steve Jobs fight with pNET

Year  in Review: Lessons from Steve Jobs’ death from pNET

This post from MedPage looks at Steve Jobs’ death in October from the distance and calmness of three months after his death–and tries to draw conclusions about treatment from the lessons of Jobs’ decisions.

Steve Jobs’ announcement that he was leaving Apple Computer as CEO resulted in a spate of articles about NET and his connection to it. Many of these articles contained factual errors not least of which was that he had pancreatic cancer. What he actually had is NET that originated in his pancreas. That may seem a splitting-hairs distinction, but it is not. Of the articles I have seen, this one from NPR is the best: It gets the facts right and explains the disease quite well.

Jobs’ unorthodox treatment

Sharon Begley does a nice job of exploring the course of Steve Jobs’ cancer and the treatment decisions he appears to have made  about it. While some of the piece is speculative–Jobs was very reticent about discussing his health–she does well at explaining the issues he likely faced.

Getting the Jobs’ story right

The New York Daily News did one of the best jobs I have seen on making clear what the difference is between traditional pancreatic cancer and pNET.

LA Times story on Jobs’ death covers the bases

The LA Times also did well on covering the actual disease Steve Jobs had.

Baltimore Sun correction on Jobs’ cause of death

This includes a fairly detailed description of the difference.

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NET Cancer Medical Reading

Aimed at Doctors on the Latest Research–But some can be understood by laypeople

These are posted in roughly chronological order, with the most recent information at the top and the least recent toward the bottom.

A Practical Guide to Supportive Care of Patients with Functional Neuroendocrine Tumors

Here is the latest on treatments for NET cancers for the medical community. The paper is by carcinoid/NET specialist Dr. Lowell B. Anthony and reviews the progress made in the last 30 years on NET cancer. Much of that progress really has come over just the last five years.

Primary Neuroendocrine Tumor of the Left Hepatic Duct: A Case Report with Review of the Literature

This is an exceedingly rare form of NET cancer with only 77 recorded cases. Interestingly, when the tumor could not be removed, treatment with Octreotide appears to have shrunk the tumor.

Merkel Cell Carcinoma Prognosis Linked to Vitamin D

A Finnish study argues Vitamin D deficiency is common in Merkel Cell Carcinoma–a skin cancer form of NET cancer. Another study reported here says both Merkel Cell and Melanomas tend to form on the left side of the body. While you have to register to access the study, once that is done, the information is free.

Pancreatic Neuroendocrine and Carcinoid Tumors: What’s New, What’s Old, and What’s Different?

The good news from this June 2012 review paper is that we have drugs that seem to slow the progress of pancreatic NET. The bad new is they don’t seem to work very well on other NET cancers. There are some promising therapies in the pipeline but NET cancer generally still seems like a tough nut to crack.

Molecular evidence for the bi-clonal origin of neuroendocrine tumor derived metastases

This is a pretty complex genetic argument based on in vitro studies.

Small, nonfunctioning, asymptomatic pancreatic neuroendocrine tumors

This article looks at the differences between operating on small pancreatic NET cancer tumors and doing other treatments.

Association of Type-O Blood with Neuroendocrine Tumors in Multiple Endocrine Neoplasia Type 1

Those with Type O blood appear to have a greater chance of developing active NET cancers.

Cystic pancreatic neuroendocrine tumors: a clinicopathologic study.

As though NET cancer is not hard enough to diagnose, here is a new wrinkle.

Randomized crossover study in patients with neuroendocrine tumors to assess patient preference for lanreotide Autogel® given by either self/partner or a health care professional

Independence is a major issue for many NET cancer patients. This study looks at self/partner injections of a specific agent used to treat NET cancer symptoms. It found no difference in safety or efficacy when the drug was given by the patient or a partner at home compared to the same drug given by a nurse at a medical facility.

 New Perspectives in the Treatment of Neuroendocrine Tumours

This paper from the International Journal of Cancer research and Treatment addresses the European Standard of Care, which includes RPPT as an option for some tumors. This links to the abstract. To read the full article requires a subscription or payment of a fee.

Liposomal doxorubicin-based treatment in a preclinical model of adrenocortical carcinoma – Abstract

This is  a possible new drug for treating this rare form of NET cancer. The lab work with a mouse model is done. The next step is a Phase I clinical trial that has not yet been approved.

Lexicon Phase 2 Trial Of Anti-Tumor Drug Meets Primary Endpoint, Begins Phase 3

Results of Phase II on telotristat etiprate for carcinoid tumors are in and look good. The drug is palliative and not a cure, but it is headed for Phase III.

Concomitant intraductal papillary mucinous neoplasm and neuroendocrine tumor of the pancreas

These two should rarely exist together but evidence is mounting that the two often occur together. This paper from Oncology Letters looks at a single case of this combination of NET cancer with this other cancer.

The Role of 68Ga-DOTATATE PET/CT in Suspected Neuroendocrine Tumors

This is the abstract to a new paper in the Journal of Nuclear Medicine on a method for detecting NET cancers.

Ampullary neuroendocrine tumor presenting with biliary obstruction and gastric outlet obstruction

This is a report on a single patient from the Indian Journal of Medicine on a palliative procedure for an ampullary NET cancer.

Small Bowel Carcinoid Tumors: Slides from presentation at Vanderbilt

These slides are from a presentation for medical students at Vanderbilt University.

Latest Standard of Care on NET cancer (2012)

The standard of care for NET cancer was updated in the summer of 2012. If you are a doctor, this is the latest information on the treatment and management of NET cancers.

Free Pharmacology Hours for APNs- Neuroendocrine Tumors

If you are an oncology nurse–or a nurse encountering NET for the first time, this short course will bring you up-to-date on what the standard of care is currently. The course is in place until early December and offers a FREE 1.5 CEUs.

Everolimus and mTOR inhibition in pancreatic neuroendocrine tumors

This is a review paper of several studies on the use of Everolimus and other mTOR inhibitors on pNETs and other NET cancers. It includes some information on combination of MTORs with both Octreotide and Pasireotide.

Neuroendocrine tumors of the appendix in children and adolescents

While NETs are rarely found in young people, it does happen–usually after they have been operated on for something else. How rare are they? Who knows. But this study is based on 237 cases and talks about tumor size as a predictor of spread.

Neuroendocrine Tumors of the Lung

July 31, 2012 Cancers published a special issue on Neuroendocrine Tumors. This 22 page chapter from the magazine discusses NETs of the lung in great detail. The piece is not well-written and is very dense in terms of medical language but is well worth the time for medical professionals and patients with lung NETs. It claims that ALL invasive lung tumors are 20-25 percent made up of NETs. If this be true then this, added to the presence of NETs in close proximity to aggressive prostate tumors, increases the evidence for my hypothesis that NETs may be responsible for aggressive behavior in other cancers.

First human trial of new imaging technique in Denmark

This new technique involves less radiation exposure while providing better imaging quality for NETs.

Prospective Study of Bevacizumab Plus Temozolomide in Patients With Advanced Neuroendocrine Tumors

Conclusion Temozolomide and bevacizumab can be safely administered together in patients with advanced NETs, and the combination regimen appears promising for patients with pancreatic NETs. Studies evaluating the relative contributions of these two agents to the observed antitumor activity are warranted.

Varying malignant potential of appendiceal neuroendocrine tumors: Importance of histologic subtype

This is the abstract of an article in the Journal of Surgical Oncology. To read the full article you must have other a subscription or pay a fee.

The article’s conclusion: Appendiceal NETs represent a spectrum of disease with varying malignant potential: MCT (low), GCT (intermediate), and CGCC-A (high). GCTs represent the most common subtype, whereas CGCC-As place the patient at highest risk for regional and distant metastases and have the worst prognosis. J. Surg. Oncol © 2012 Wiley Periodicals, Inc.

This links to the abstract of the paper. You will need a subscription or to pay a fee to read the whole thing.

Attenuation of the Rb pathway in pancreatic neuroendocrine tumors due to increased Cdk4/Cdk6

Conclusions: Inactivation of the Rb pathway was indicated for most Pan-NETs. Gene amplification and overexpression of Cdk4 and Cdk6 suggests that patients with Pan-NETs may respond strongly to Cdk4/6 inhibitors that are entering clinical trials.

First human trial of new imaging technique in Denmark

This new technique involves less radiation exposure while providing better imaging quality for NETs.

Neuroendocrine tumors in the thymus

NETs can form just about anywhere. This has a great picture of NETs in the thymus and discusses NETs that originate there. Unlike NETs in other sites, which seem to be slightly more frequent in women than men, this location goes 3 to 1 male.

Biomarkers in pancreatic neuroendocrine tumors

This links to the abstract of the paper. You will need a subscription to read the whole thing.

Baseline demographics of patients with neuroendocrine tumors

Diagnostic strategies, management paradigms, and clinical outcomes of patients with neuroendocrine tumors (NETs) are diverse and poorly characterized. The National Comprehensive Cancer Network (NCCN) created a comprehensive longitudinal database to characterize patients treated for NETs at seven participating institutions. Preliminary results from the database are reported. This links to the abstract of the paper. You will need a subscription to read the whole thing.

Refining the Use of Everolimus for Neuroendocrine Tumors

A review of data from a previous study shows Everolimus may be more effective in treating NETs than previously thought. The paper was presented at the Jan. 19, 2012 Gastrointestinal Cancers Symposium.

Expression of a Neuroendocrine Gene Signature in Gastric Tumor Cells 

This paper on genetics involved in NETs is very dense but argues that inactive genes that are supposed to control tumor suppressor genes may be part of the problem.

Niiki Pharma Announces the Completion of Phase I Dose Escalation for First-in-Man Anti-Cancer Agent NKP-1339

This new drug showed positive results in NETs. It is off in the distance in terms of approvals.

Nature Review article looks at NETs of the gut

This article reviews current knowledge of NETs of the GI tract. It requires a payment to see the full article.

Management of NETs of unknown primary 

This article from Medscape details symptoms and methods of tracking down primary tumors and what to do if one cannot be found. It will be highly useful to Primary Care physicians and to oncologists encountering the disease for the first time. It is very up-to-date–and highly accessible to many non-physicians.

Lancet publishes results from two drug trial

Researchers combined octreotide and everolimus to improve patient survival.

Article argues for combining Everolimus with somastatin analogs

In an article in the Journal of Clinical Endocrinology & Metabolism published online before the magazine went to press, a group of doctors discusses the use of the newly approved Everolimus in combination with somastatin analogs. The full text of the article is not yet in print. This is a quick summary of their findings.

Temozolomide and Thalidomide for Neuroendocrine Tumors: A Retrospective Report

This is an abstract of a paper presented the 2011 Gastrointestinal Oncology conference. It replicates results of an earlier study.

Hepatic arterial embolization for the treatment of metastatic neuroendocrine tumors 

This downloads a very recent paper on liver arterial embolization and its impact on overall survival and symptom reduction. It argues this method leads to significantly increased survival and reduction in symptoms for NET patients where removal of metastases in the liver is not possible. The paper is well-written and not overly difficult to understand for laypeople, though aimed prima rally at doctors.

OctreoPharm gets Orphan status in Europe for new NET test using Gallium

The European Medicines Agency has granted an Orphan Drug Designation to a Berlin based company for diagnosis of gastroentero-pancreatic neuroendocrine tumors. This links to the press release. The product is called SOMscan and uses Gallium-68.

Q & A on pancreatic NET with Dr. Erik E. Custem

THis is a pretty basic interview on NET that starts in the pancreas. It is in somewhat more difficult language than some will be comfortable with. But the piece is pretty straight-forward.

OctreoPharm Sciences GmbH granted global license for Oncology Diagnostic product

The new Gallium-68 labeled contrast agent in the license makes neuroendocrine tumors easier to see.

Neuroendocrine Liver Tumors and Orthotopic Liver Transplantation

This downloads a paper reviewing the success of liver transplants in NETs that have metastasized to the liver. The paper argues the approach has better results than the current standard treatments for patients in this position.

ASCO Tumor Board: Neuroendocrine Tumors

This links to a forum NEC aimed mainly at doctors about standard of care options and evaluation benefits and limitations of recent treatment options including local and systemic therapies for NETs.

Announce further results on chemosaturation in liver mNET cases at European Multidisciplinary Cancer Congress
This is a further explanation of the presentation at CIRSE earlier in the month on the use of chemosaturation in cases like Jane’s. The material is dense, but many laypeople will be able to follow the basic explanation. Doctors should have no problem with this follow-up. The earlier article is posted below.

This connects to the abstract of an article in the October 1 issue of Cancer. to see the full text you will have to be a subsciber or pay a fee to see the full text.

This links to a summary of Dutch research into RPRRT and its effects on quality of life. The original article appeared in the Journal of Nuclear Medicine  which is listed below, but this summary is more readable and available without paying the fee for the full text.

This article from the Archives of Surgery reviews cases of liver transplants  in NEC cases. It cites a five year survival rate of 49 percent for the procedure. The article also makes suggestions about timing of the operation.

This connects to the abstract of a study done at the University of Iowa on identifying new targets in neuroendocrine tumors. Much of this goes right over my head, but may be of use to medical researchers.

Oncology featured a pair of articles on neuroendocrine cancers in its most recent issue. The links above will take you to them. Be forewarned, they are fairly dense as they were written for the medical community.

This link is to another fairly technical article in Nature Review Endocrinology. Only the abstract is linked here. To access the full text you will have to pay a fee or gain access through a site license. For laypeople that is probably not worthwhile. For those in the medical profession it likely is.

Patient-Specific Radiation Dosimetry of 99mTc-HYNIC-Tyr3 

The Journal of Nuclear Medicine has an article on dosing with a specific dye in detecting neuroendocrine tumors. This link will connect you to the abstract. The piece is highly technical–and not of much use to laypeople. For medical professionals with an interest, the full text requires a $15 payment or a subscription to the Journal.

This is a fairly technical PR piece about a new method of dealing with neuroendocrine cancer after it metastasizes to the liver–the situation Jane was in when she was diagnosed.

This is the abstract to a longer article in the Journal of Nuclear Medicine on a new technique for identifying neuroendocrine tumors using antagonist rather than agonist materials. The abstract is highly technical–more aimed at radiologists than laypeople. The full text requires a subscription to the journal or the payment of a fee.

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NET Cancer Trials

Targeted alpha therapy receives award in US

Outlines use of Alpha Radiation in treatment of NETs. The trial is ongoing.

NETs of Prostate inhibited by PHA-739358

This short piece outlines a particularly nasty NET and a promising possible treatment.

Poster #1 outlining results of Phase 2 Trial of telotristat etiprate

Poster #2 outlining results of Phase 2 Trial of telotristat etiprate

Presentation Slides from telotristat etiprate presentation at NANETS

Phase 2 study results for telotristat etiprate in patients with CS to be presented at NANETS

The four items above give a fairly clear overview of the success of the Phase 2 Trial of telotristat etiprate as presented at the October 20-22 NANETS conference in Minneapolis. The results merit further study, according to the presenters. Lead author on the study was Matthew Kulke from DFCI.

These are the results of a Phase I  trial of an entirely new anti-tumor drug. The substance is called NKP-1339. The trial was conducted in Phoenix, Arizona. It had a significant effect on a non-pancreatic NET. It created regression in that patient”s tumor. A Phase I trial does not mean much–and FDA approval is still clearly years away even if everything goes well from here. But the study is promising.

This is a link to the announcement of a trial for a new radiation treatment for neuroendocrine tumors. The trial is taking place in Houston, Texas. This treatment has been available in Europe previously. It uses LU-177 Octreotate.

(If you learn of or know of trials of new drugs or treatments for NECs or CS, please e-mail me at and I will post them here. Walking with Jane also receives mail at P.O. Box 9721, Fall River, MA 02720.)

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NET Cancer Drug and Treatment Approvals

This links to a press release announcing that Novartis has received approval in the European Union for use of Afinitor to treat pancreatic neuroendocrine cancer, This is the form of the disease Steve Jobs has. Unfortunately, it is also among the rarer forms of NEC. The drug was approved earlier this summer for use in the US.

Sunitinib and Everolimus: New Indications in Pancreatic Neuroendocrine Tumors

This links to an article on the approval of Sutent for treatment in pNET cases.

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NET Cancer Conferences and Events

The Carcinoid Cancer Foundation has a new link on its website called Continuing Medical Education. Aimed at medical professionals, the link directs people to upcoming regional training events.

There are a number of conferences on NEC/NET/CS each year aimed at patients and lay caregivers as well as medical personnel. Both National Carcinoid Foundation and Caring for Carcinoid Foundation carry lists of these conferences.’s calendar page tries to carry a comprehensive list of these conferences as well. If you have an event that has to do with NEC/NET/CS please let us know by emailing us at Walking with Jane also receives mail at P.O. Box 9721, Fall River, MA 02720.

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