23 Feb 2025
By Ronny Allan
0 Comments
Ronny’s weekly update – 17th – 23rd Feb 2025

Ronny’s weekly update – 17th – 23rd Feb 2025

Newsletters
New or Republished Blog Posts this week https://ronnyallan.net/2021/05/22/clinical-trial-survivin-long-peptide-vaccine-in-treating-patients-with-metastatic-neuroendocrine-tumors/ https://ronnyallan.net/2025/02/17/the-netest-a-chromogranin-a-replacement-and-more/ https://ronnyallan.net/2025/02/18/neuroendocrine-cancer-my-distant-lymph-nodes/ https://ronnyallan.net/2025/02/19/the-5-es-of-my-daytrip/ https://ronnyallan.net/2025/02/20/neuroendocrine-cancer-nodes-nodules-lesions/ https://ronnyallan.net/2025/02/20/abseil-for-nets-featuring-heidi-veacock/ Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group Surprised to see this…
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20 Feb 2025
By Ronny Allan
0 Comments
Abseil for NETs – in memory of Heidi and Gary Veacock

Abseil for NETs – in memory of Heidi and Gary Veacock

Fundraising, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Such Sad news.  I was totally shocked to hear some heart-breaking news late on 5th February 2026.  I had been online friends with Gary Veacock, a recently retired Lt Col in the Royal Marines.  As a veteran, the comradeship was instant.  Initially he would ask questions about NET and my experience.  I guess he was keen to hear about others experiencing the same condition as his wife Heidi.  Later on, I helped him fundraise for Heidi via a Royal Marines sponsored abseil organised by Gary with all proceeds going to Royal Free London, one of the top NET centres of…
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20 Feb 2025
By Ronny Allan
18 Comments
Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

Living with Neuroendocrine Cancer, Survivorship, The NET Effect Series, Treatment, , , , , , , , , , , , , , , , , , , , ,
A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of…
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19 Feb 2025
By Ronny Allan
2 Comments
The Other 5 E’s by Ronny Allan

The Other 5 E’s by Ronny Allan

Inspiration, Living with Neuroendocrine Cancer, , , , , , , , , ,
I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say, "I can't" than it is to say, "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So, this is the story of my daytrip at the end of summer (and pretty much many days out). The 5 Es Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of…
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18 Feb 2025
By Ronny Allan
2 Comments
Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Treatment, , , ,
Updated 27th February 2026 My experience with lymph node surgery - 27th February 2012 As a metastatic Small Intestine NET case, I had the usual bulky chains of lymph node metastases in or around the mesentery that frequently appear with an abdominal primary. Most of these were removed during my primary resection. I still have some suspicious lymph nodes in the peri-aortic region, potentially responsible for my retroperitoneal fibrosis, another strange issue I live with.However, I also had some 'distant nodes' above the diaphragm. My surgeon described my 'distant' lymph node issues as an 'unusual disposition' of tumours. These were …
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17 Feb 2025
By Ronny Allan
7 Comments
The NETest® – can it replace Chromogranin A and more?

The NETest® – can it replace Chromogranin A and more?

A Spotlight on NENs - Testing Series, Clinical Trials and Research, Patient Advocacy, , , , , , , , , ,
See Summary below for a quick updateUpdate 8th Dec 2025.  New York State Department of Health Grants Approval of Wren Laboratories’ NETest® 2.0 for Clinical Use Clinically Validated Performance In validation across 3,042 NET patients and 1,084 controls/other cancers, NETest 2.0 demonstrated: Sensitivity: 93% Specificity: 85% Positive predictive value: 95% Negative predictive value: 82% Overall accuracy: 91% These results support broad clinical utility, including: Accurate detection across all NET grades and stages  Identification of minimal residual disease, recurrence, and progression Monitoring and prediction of therapeutic response, including 177Lu-PRRT Prognostic value for progression-free and overall survival Detection of neuroendocrine differentiation in select epithelial tumors Click…
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17 Feb 2025
By Ronny Allan
0 Comments
Ronny’s weekly update – 10th – 16th Feb 2025

Ronny’s weekly update – 10th – 16th Feb 2025

Patient Advocacy
New or Republished Blog Posts this week https://ronnyallan.net/2025/02/14/ronny-allans-ponetry-an-ode-to-lanreotide/ https://ronnyallan.net/2025/02/16/dont-believe-the-hype-neuroendocrine-cancer-myths-debunked/ https://ronnyallan.net/2025/02/15/genetics-and-neuroendocrine-tumors/ https://ronnyallan.net/2025/02/09/ronnys-weekly-update-3rd-9th-feb-2025/ https://ronnyallan.net/2025/02/14/no-one-is-ever-alone-on-ronnyallan-net/ Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group Surprised to see this at…
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16 Feb 2025
By Ronny Allan
2 Comments
Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Edited and refreshed 13th January 2026 There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasise Simply untrue.  They are a heterogeneous group of tumours.  Read more…
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15 Feb 2025
By Ronny Allan
10 Comments
Genetics and Neuroendocrine Tumours

Genetics and Neuroendocrine Tumours

Awareness, Living with Neuroendocrine Cancer, Survivorship, , , , , , , , , , , , , , , , , , , , , , , , , , ,
Hereditary genetics.....where to focus In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing as research advances and I cannot guarantee this post will contain all of them. Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumours…
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14 Feb 2025
By Ronny Allan
1 Comment
No-one is ever alone on RonnyAllan.NET

No-one is ever alone on RonnyAllan.NET

Patient Advocacy, Survivorship
On February 14th, I'm so lucky to have Chris to celebrate Valentine's day.  I know some people live alone and for some that is their choice. But I also know some don't have that choice, perhaps they are a NET patient who lost their partner, or a partner who lost their loved one to NET.  My heart goes out to those today.  I have a private group where people can ask questions about NET which is open 24/7 365 days per year. No-one is ever alone in this group. I may be sleeping if you contact me on my public…
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14 Feb 2025
By Ronny Allan
0 Comments
Ronny Allan’s ‘PoNETry’ – An Ode to Lanreotide

Ronny Allan’s ‘PoNETry’ – An Ode to Lanreotide

Humour, Inspiration, Survivorship, Treatment, , , ,
  Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Read about my experience with Lanreotide - click here Thanks for reading Ronny     I also have PoNETry on Invisible Illness - click here Click here and answer all questions to join my private Facebook group   Most recent posts - click to read    
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13 Feb 2025
By Ronny Allan
0 Comments
Lanreotide and Keytruda – the PLANET study (NCT03043664)

Lanreotide and Keytruda – the PLANET study (NCT03043664)

Clinical Trials and Research, , , , ,
Update 13th February 2025.  In my main coverage of Immunotherapy for Neuroendocrine Neoplasms (NENs), you will see a section where one NET specialists described Neuroendocrine Tumours as an “immunological desert”.  What was meant by is that there’s little evidence immunotherapy is effective in the majority of Neuroendocrine Tumours (NETs).  The output from this trial continues to back that view.  It is important to note the nomenclature of NETs rather than NENs as almost all the immunotherapy drug approvals to date have been for Neuroendocrine Carcinomas (NECs). As the trial abstract conclusion said, "We conclude that immune checkpoint blockade had low…
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12 Feb 2025
By Ronny Allan
0 Comments
5 posts not to miss on Ronny Allan’s blog

5 posts not to miss on Ronny Allan’s blog

Patient Advocacy
Just click on the pictues and read (and hopefully share!) I'm constantly fighting algorithms!  Facebook is the worst, apparently only 10% of followers will get a notification of a new post on my pages.  10% !!! Because I am a blogger for a health condition, they put me amongst businesses.  Clearly they want advertising revenue from business, I get that, Facebook has huge overheads.  But I am here helping people and not reaching my community (unless I pay of course).  However, if you are following my Facebook pages, add them to your favourites and you will help beat the algorithms.…
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09 Feb 2025
By Ronny Allan
0 Comments
Ronny’s weekly update – 3rd – 9th Feb 2025

Ronny’s weekly update – 3rd – 9th Feb 2025

Newsletters, Patient Advocacy
New or Republished Blog Posts this week It's been an unforgettable week.  In addition to the challenges of day to day living including any responsibilities beyond where I live, I seem to have crammed quite a lot in.  Monday was mainly supporting others outside the NET community.  At the other end of the spectrum, Tuesday was a quick trip to London to take part in Macmillan's World Cancer Day.  As a Macmillan Cancer Voice, I was treated to a discussion between the UK Government's Health Minister (Wes Streeting) and well known BBC political commentator Nick Robinson.  I didn't get a…
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05 Feb 2025
By Ronny Allan
8 Comments
Living with Cancer – Worrier or Warrior?

Living with Cancer – Worrier or Warrior?

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , ,
If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers.  I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way.  I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing?  However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article…
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03 Feb 2025
By Ronny Allan
1 Comment
4th February – World Cancer Day 2026 – Cancer turned my life upside down

4th February – World Cancer Day 2026 – Cancer turned my life upside down

Inspiration, Patient Advocacy, ,
What is World Cancer Day? World Cancer Day is an initiative of the Union for International Cancer Control (UICC), the largest and oldest international cancer organisation dedicated to taking action on cancer. UICC unites and supports the cancer community in its efforts to reduce the global cancer burden, promote greater equity and ensure that cancer control remains a priority on the global health and development agenda. Founded in 1933 and based in Geneva, Switzerland, UICC has more than 1120 member organisations in over 172 countries and territories. The membership base includes the world’s major cancer leagues and societies, research institutes, treatment centres, hospitals, ministries…
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03 Feb 2025
By Ronny Allan
0 Comments
Ronny’s weekly update – 27th Jan – 02 Feb 2025

Ronny’s weekly update – 27th Jan – 02 Feb 2025

Newsletters, Patient Advocacy
New or Republished Blog Posts this week https://ronnyallan.net/2025/01/26/theres-no-such-thing-as-a-tickbox-neuroendocrine-cancer-patient/ https://ronnyallan.net/2025/01/27/ronnys-weekly-update-20-26-january-2025/ https://ronnyallan.net/2025/01/28/neuroendocrine-cancer-not-all-answers-are-black-and-white/ https://ronnyallan.net/2025/01/29/expanding-prrt-trial-of-177lu-edotreotide-solucin-compete-trial/ https://ronnyallan.net/2025/02/01/a-review-of-january-2025-from-ronny-allan/ Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group I guess you like my…
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03 Feb 2025
By Ronny Allan
0 Comments
If you don’t understand the heterogeneity of Neuroendocrine Neoplasms, it’s likely you don’t really understand Neuroendocrine Neoplasms

If you don’t understand the heterogeneity of Neuroendocrine Neoplasms, it’s likely you don’t really understand Neuroendocrine Neoplasms

Patient Advocacy,
If you read any authoritative source on this cancer, it will normally begin with “Neuroendocrine Neoplasms (NENs) are heterogeneous tumours ………….”. "Heterogeneous" means consisting of dissimilar parts or elements, essentially meaning "mixed" or "diverse," but I used the term "heterogeneity" to refer to the quality or state of being heterogeneous, meaning the presence of diverse components within a group or system; both terms indicate a lack of uniformity or consistency. You will note I used the term Neuroendocrine Neoplasms here - that is in line with formal naming conventional per agreed International Agency for Research on Cancer (IARC) terms.  It…
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01 Feb 2025
By Ronny Allan
0 Comments
A review of January 2025 from Ronny Allan

A review of January 2025 from Ronny Allan

Newsletters, Patient Advocacy,
Here is the monthly summary of January 2025 on RonnyAllan.NET The list of posts this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered.  Click on the each of the 10 posts to read. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by…
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29 Jan 2025
By Ronny Allan
4 Comments
Phase 3 Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs

Phase 3 Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs

Clinical Trials and Research, , , , , , , , , , , , , , ,
Update - 13th November 2025. ITM Announces FDA Acceptance of New Drug Application (NDA) and PDUFA Date for n.c.a. ¹⁷⁷Lu-edotreotide (ITM-11) in Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs)Garching / Munich, Germany, November 13, 2025 - ITM Isotope Technologies Munich SE (ITM), a leading radiopharmaceutical biotech company, today announced that the U.S. Food and Drug Administration (FDA) completed its filing review and accepted the company’s New Drug Application (NDA) for n.c.a. 177Lu-edotreotide (also known as ITM-11 or 177Lu-edotreotide). 177Lu-edotreotide is ITM’s proprietary, synthetic, targeted radiotherapeutic investigational agent for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). The FDA has set a Prescription Drug User Fee Act (PDUFA) goal date…
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28 Jan 2025
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Not all answers are black and white

Neuroendocrine Cancer: Not all answers are black and white

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect Series, ,
I get lots of questions. Some are direct to me by a messenger type app. Many are posed in my private group - these are normally always directed at the entire group but often I'm tagged in, a giant hint that I'm expected to reply. I don't mind too much but my answer is generally the same whichever scenario. Where I'm not tagged, I'm still happy to answer along with others in the same post. Sometimes I only comment as part of my moderating role in the group. In the early days, I would generally contribute to most posts but…
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27 Jan 2025
By Ronny Allan
0 Comments
Ronny’s weekly update 20-26 January 2025

Ronny’s weekly update 20-26 January 2025

Newsletters, Patient Advocacy,
New or Republished Blog Posts this week https://ronnyallan.net/2025/01/26/theres-no-such-thing-as-a-tickbox-neuroendocrine-cancer-patient/ https://ronnyallan.net/2025/01/24/neuroendocrine-cancer-ga68-pet-scan-a-game-changer/ https://ronnyallan.net/2025/01/22/neuroendocrine-cancer-to-cut-or-not-to-cut/ https://ronnyallan.net/2025/01/21/neuroendocrine-cancer-my-liver-surgery/ https://ronnyallan.net/2025/01/18/every-picture-tells-a-story/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group an oldie but…
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26 Jan 2025
By Ronny Allan
5 Comments
There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

Awareness, Patient Advocacy, , , ,
Thousands of people are diagnosed with cancer every day.  Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been ploughed into research and care services.  Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and be under surveillance for a period (normally 5 years but this differ with different cancer types) and then be declared in remission, or even cured. The problem with certain cancer symptoms is that they are not…
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24 Jan 2025
By Ronny Allan
16 Comments
Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?

Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?

Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , ,
I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of the remnant disease. The third scan in 2013 highlighted an additional lesion in my thyroid (still under a watch and wait regime, biopsy inconclusive - but read on....). In 2018, my 6…
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22 Jan 2025
By Ronny Allan
7 Comments
Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , ,
Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me).  Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors.  If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…
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21 Jan 2025
By Ronny Allan
12 Comments
Neuroendocrine Cancer – my liver surgery

Neuroendocrine Cancer – my liver surgery

Treatment, , , , , , , , , , , ,
From day 1 of my diagnosis, I knew my liver was going to need some attention, but I had always known that total removal of all tumours would not be possible - the diagnostic scan confirmed I had an incurable disease. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several with quite avid isotope activity. However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery which took place…
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18 Jan 2025
By Ronny Allan
0 Comments
Ronny Allan – Every picture tells a story

Ronny Allan – Every picture tells a story

A spotlight on NENs, A spotlight on NENs - Syndromes, A Spotlight on NENs - Testing Series, A spotlight on NENs - Types, Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text.  This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s),…
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16 Jan 2025
By Ronny Allan
3 Comments
Neuroendocrine Cancer: Diagnosing the Undiagnosed

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Patient Advocacy, , , , , , , , , , , , , , , , , ,
Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if…
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15 Jan 2025
By Ronny Allan
28 Comments
Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Treatment, , , , , , , , , , , , , , , , , , , ,
Updated and reviewed 15th January 2025. Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved.  So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone over secretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors.  They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed. Somatostatin is actually a naturally…
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14 Jan 2025
By Ronny Allan
8 Comments
Neuroendocrine Cancer – If you can see it, you can detect it!

Neuroendocrine Cancer – If you can see it, you can detect it!

Living with Neuroendocrine Cancer, Survivorship, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Updated December 2025 Background Scanning is a key diagnostic support and surveillance tool for any cancer.  Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer. When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan…
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13 Jan 2025
By Ronny Allan
2 Comments
Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 2)

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 2)

Treatment, , , , , , ,
The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce (on the left on the picture below), I tolerated it well.  My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1.  If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed was the urine…
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11 Jan 2025
By Ronny Allan
3 Comments
Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)

Survivorship, Treatment, , , , , , ,
8th - 26th November 2010 Memories of my 18-day stay in the hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days when morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NETs are one of a small number of cancers for which surgical debulking can in many…
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10 Jan 2025
By Ronny Allan
7 Comments
Nick Robinson – Neuroendocrine Cancer – the devil is in the detail

Nick Robinson – Neuroendocrine Cancer – the devil is in the detail

Awareness, Patient Advocacy, Survivorship, , , , , ,
Originally published March 2015.  Updated 10th February 2025 Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day. Nick is pretty good at painting politicians into a corner, trying to eek out what they really think, not the 'spin' which they are normally pretty good at. Like a lot of people, Nick's life changed when he was diagnosed with…
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06 Jan 2025
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Watch and wait or watch and worry?

Neuroendocrine Cancer: Watch and wait or watch and worry?

Patient Advocacy, Survivorship, Treatment, ,
Watch and wait Not all cancers are the same. Not all Neuroendocrine Cancers are the same either! The technical term is heterogeneity and the term "Neuroendocrine Neoplasms are a group of heterogenous tumours" is commonly found in many texts. Some cancers grow quickly but many grow slowly, or even very slowly. When you are diagnosed with some types of cancer, you might not need treatment straight away. Doctors then monitor you with regular check ups and tests. They sometimes call this 'watch and wait'. Watch and wait means that you have cancer, but you do not need treatment straight away.…
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01 Jan 2025
By Ronny Allan
0 Comments
A review of 2024 from Ronny Allan

A review of 2024 from Ronny Allan

Patient Advocacy, ,
ReviewBlog.  It was a funny old year in 2024.  New challenges prevented me from exploiting the increase in followers and views of 2022/2023 following the slight slump during the pandemic, coupled with the introduction of new Facebook algorithms which treated non-profits such as myself as businesses (clearly a tactic to  increase advertising revenue).  Personal challenges included some strange symptoms which I self diagnose as Hives (urticaria) for the first 6 months and the last two months of 2024.  This led to me to write two posts (Histamine The NET Effect and Hives (Urticaria) The NET EffectI still managed to push…
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30 Dec 2024
By Ronny Allan
0 Comments
A review of December 2024 from Ronny Allan

A review of December 2024 from Ronny Allan

Patient Advocacy
From Ronny Allan. Here is the monthly summary of December 2024 on RonnyAllan.NET A quiet month due to holiday and grateful for those who continued to read and share my articles while I was absent. I wish I could do more but there's just little old me!  And Chris too of course for those following my exploits on Facebook Page Ronny Allan.  Fortunately I have a great 2IC and admin team in my private group, so that runs as normal. Firstly, I'll list the top 10 performing blog posts in December, I can assure you there is some great information in…
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24 Dec 2024
By Ronny Allan
4 Comments
A Christmas 2024 message from Ronny

A Christmas 2024 message from Ronny

Patient Advocacy,
Background to 2024  I've only ever sent these on Facebook but since last year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter (X), Facebook, Newsletter or direct from a subscription to my website.  All of the outlets above have kept my viewing figures high, I guess I can't complain about a 2024 total of over 285,000 blog hits (so far), a figure higher than 2023.  I've had a lot of personal issues to deal with in 2024, including some strange health stuff, so I'm delighted this…
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09 Dec 2024
By Ronny Allan
0 Comments
Lanreotide – 15 more years

Lanreotide – 15 more years

Patient Advocacy, Treatment
I first wrote this blog early in 2015 and I borrowed the term 'Four More Years' from the US presidential election campaigns, a big topic at that time.  At the time of writing I had just celebrated being on Lanreotide for 4 years (my first treatment was 9th December 2010). Curiously I was only asking for another 4 years but my blog title meant I was somewhat restricted in choice of timescale!  I posted the original below. I now find myself writing a follow-up post 11 years later.  Had someone asked me if I thought I would be repeating this…
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03 Dec 2024
By Ronny Allan
0 Comments
Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Inspiration, Patient Advocacy, , , , ,
Self Pity or Self Help? I'm not one for wallowing in self-pity or accepting invites to pity parties.  It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in…
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01 Dec 2024
By Ronny Allan
23 Comments
Neuroendocrine Cancer – tumour markers and hormone levels

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Originally published 2016, updated October 2025 Background Some people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time.  Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done…
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30 Nov 2024
By Ronny Allan
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RonnyAllan.NET – A Review of November 2024

RonnyAllan.NET – A Review of November 2024

Newsletters
Here is the monthly summary of November 2024 on RonnyAllan.NETI paid little attention to 10th Nov awareness (I do enough on the other 364 days!) plus it is a personal time for me with surgery cancerversaries etc.  The top post this month was totally unexpected as it was an update of quite an old entry on my website - just goes to show that some studies go on for many years! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  The selection of top posts this month really shows the breadth of…
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29 Nov 2024
By Ronny Allan
7 Comments
It’s scary searching Cancer online

It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, , ,
When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date.  As a novice…
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28 Nov 2024
By Ronny Allan
0 Comments
Happy Thanksgiving

Happy Thanksgiving

Diet and Nutrition, Living with Neuroendocrine Cancer, , , , , , , , , , , , , ,
I have been posting this every year on last Thursday in November and I kept forgetting that other countries other than USA (and Territories of the United States) also do Thanksgiving but mostly on different dates. This includes (but is probably not limited to): Canada, Brazil, Grenada, Liberia, Saint Lucia, Leiden (Netherlands), Norfolk Island (Australia).   I hope you all had/have a great Thanksgiving Day! Turkey and Sleep Now ........ I hate to stereotype but I guess a lot of you might be eating turkey on Thanksgiving Day?  No Thanksgiving is complete without a turkey at the table (... so I'm told!). …
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27 Nov 2024
By Ronny Allan
20 Comments
The Invisible NET Patient Population 

The Invisible NET Patient Population 

Awareness, , , , , , , , , , ,
First published August 2017 but updated several times UPDATED TO INCUDE PUBLISHED US FIGURES IN 2025 OPINION I found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting.  The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you…
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26 Nov 2024
By Ronny Allan
0 Comments
Temozolomide and Survivin Long Peptide Vaccine (SurVaxM) for the Treatment of Patients With Progressing Metastatic Neuroendocrine Tumors

Temozolomide and Survivin Long Peptide Vaccine (SurVaxM) for the Treatment of Patients With Progressing Metastatic Neuroendocrine Tumors

Clinical Trials and Research, , ,
What are cancer vaccines?I remember seeing a comment by a NET Specialist on twitter saying, "We need vaccines".  This was in response to a tweet from another NET Specialist reporting dismal data from an immunotherapy drug for Neuroendocrine Carcinomas. In 2020/2021, the word vaccine has been used a lot, but this specialist was not inferring anti-viral treatment, he was talking about "cancer vaccines", an emerging discipline in science where vaccines act as an immunostimulant to treat cancer.  This prompted me to look around and found this trial which may be of interest to you.  However, before anyone gets too excited,…
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26 Nov 2024
By Ronny Allan
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18 days in November 2010 – by Ronny Allan

18 days in November 2010 – by Ronny Allan

Inspiration, Patient Advocacy, Treatment, ,
I'm publishing this 14 years to the day I walked out of hospital holding the hand of my wife Chris.After a diagnosis of advanced Neuroendocrine Tumours on 26th July 2010, many things were lined up for me.  Some were on the critical path and had to be sequenced.  Many of them were pieces of evidence to support a treatment, which for many with advanced Neuroendocrine Tumours, offered the best hope for living longer - debulking surgery.  People with very aggressive cancers at Stage IV may not be offered surgery, but one of the features of low grade metastatic NETs i.e. advanced…
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25 Nov 2024
By Ronny Allan
0 Comments
Ronny Allan’s roundup week ending 24th November 2024

Ronny Allan’s roundup week ending 24th November 2024

Newsletters
New or Republished Blog Posts this week https://ronnyallan.net/2024/11/24/in-the-war-on-neuroendocrine-cancer-lets-not-forget-to-win-the-battle-for-better-quality-of-life/https://ronnyallan.net/2024/11/23/carcinoid-whats-in-a-name/https://ronnyallan.net/2024/11/21/running-in-the-family-multiple-endocrine-neoplasia-men/https://ronnyallan.net/2024/11/14/update-oncolytic-virus-trials-for-neuroendocrine-cancer/Twitter, X and BlueskyTwitter became X and still called twitter but Bluesky is a new kid on the block, works like twitter/X.  You can get me on Bluesky by clicking here (clearly you also need a Bluesky account).https://bsky.app/profile/ronnyallan.bsky.socialFacebook - Neuroendocrine Cancer (the original)This is my main page posting blogs and other NET stuff.  Click here to browse the page and follow or like please if you've not already done so.  Feed below too.Facebook - World Neuroendocrine Cancer Day (the original)This is my other page posting blogs and other NET stuff but mainly focussed on…
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24 Nov 2024
By Ronny Allan
29 Comments
In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , ,
Originally published March 2017 OPINION.  Date of Article March 2017.  In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…
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23 Nov 2024
By Ronny Allan
4 Comments
Carcinoid – What’s in a name?

Carcinoid – What’s in a name?

Awareness, , , , , , , , , , ,
A quick primer on the word 'CARCINOID'.  It originates from the term 'Carcinoma-like'.  'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'.  This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion. The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour.  That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed…
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21 Nov 2024
By Ronny Allan
6 Comments
A spotlight on Multiple Endocrine Neoplasia (MEN)

A spotlight on Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine Cancer, , , , , , , , , , , , , , , , ,
First published 2015, updated for 2025. Overview We all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN).  I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine-related effects. MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues).  Neoplasia is…
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