Neuroendocrine Neoplasms:  A riddle wrapped in a mystery inside an enigma

Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma

  The riddle. For many years, I've been reading and blogging about Neuroendocrine Neoplasms, NENs for short.  NEN is a relatively new term which came after my diagnosis.  Nomenclature is still evolving and there is always something to learn. It's also true to say the term 'Neuroendocrine Neoplasms' is the same as saying 'Neuroendocrine Cancer'. These neoplasms are cancers that begin in specialised cells called 'neuroendocrine cells'. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells, particularly the latter.  In face one NET specialist said "While the name “neuroendocrine” implies that these tumors involve both nerve…
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Ronny’s weekly update – 17th – 23rd Feb 2025

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

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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Abseil for NETs – in memory of Heidi and Gary Veacock

Abseil for NETs – in memory of Heidi and Gary Veacock

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

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

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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The Other 5 E’s by Ronny Allan

The Other 5 E’s by Ronny Allan

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

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

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

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

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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Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

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

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

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

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

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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A review of January 2025 from Ronny Allan

A review of January 2025 from Ronny Allan

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

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

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…
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Ronny’s weekly update 20-26 January 2025

Ronny’s weekly update 20-26 January 2025

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

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

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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Neuroendocrine Cancer – my liver surgery April 2011

Neuroendocrine Cancer – my liver surgery April 2011

  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…
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Ronny Allan – Every picture tells a story

Ronny Allan – Every picture tells a story

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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Somatostatin Analogues for Neuroendocrine Cancer:  Lanreotide and Octreotide

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. 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…
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Neuroendocrine Cancer – If you can see it, you can detect it!

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

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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A review of 2024 from Ronny Allan

A review of 2024 from Ronny Allan

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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A review of December 2024 from Ronny Allan

A review of December 2024 from Ronny Allan

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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A Christmas 2024 message from Ronny

A Christmas 2024 message from Ronny

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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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

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 the world because I'm…
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RonnyAllan.NET – A Review of November 2024

RonnyAllan.NET – A Review of November 2024

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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18 days in November 2010 – by Ronny Allan

18 days in November 2010 – by Ronny Allan

I published 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…
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Ronny Allan’s roundup week ending 24th November 2024

Ronny Allan’s roundup week ending 24th November 2024

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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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

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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Update – Oncolytic Virus Trials for Neuroendocrine Cancer

Update – Oncolytic Virus Trials for Neuroendocrine Cancer

Updated 28th May 2025 What exactly are Oncolytic Viruses? Oncolytic Viruses infect and break down cancer cells but not normal cells. Oncolytic viruses can occur naturally or can be made in the laboratory by changing other viruses. Certain oncolytic viruses are being studied in the treatment of cancer. Some scientists say they are another type of immunotherapy whilst others say it's too early to classify them as such. The good news is that Neuroendocrine Cancer seems to figure in this work with two of these viruses apparently working on mice to date. Listed below are two active projects involving NETs,…
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A Review of October 2024 on RonnyAllan.NET

A Review of October 2024 on RonnyAllan.NET

Here is the monthly summary of October 2024 on RonnyAllan.NET Awareness 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 post graphic to read it. 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.  Fortunatey I have a great 2IC and admin team in my private group, so that runs as…
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Things to do today

Things to do today

When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something…
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PRRT – The Sequel?  Alpha-emitter PRRT for Neuroendocrine Tumours (NET)

PRRT – The Sequel? Alpha-emitter PRRT for Neuroendocrine Tumours (NET)

Updated and reviewed June 2026. Alpha‑emitter PRRT is emerging as the next major evolution of peptide receptor radionuclide therapy. Instead of using a beta‑emitting isotope such as 177Lu, these new approaches use alpha‑particle–emitting isotopes like 212Pb or 225Ac. The goal is simple: deliver more powerful DNA‑damaging radiation directly into tumour cells while keeping the impact on surrounding tissues as low as possible. This is still experimental, but the science is compelling — and the early clinical signals are strong enough that alpha‑emitter PRRT is now considered one of the most important areas to watch in NET research. How alpha‑emitter PRRT…
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6 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)

6 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)

Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrassed, they don't understand the specific cancer, they don't understand the prognostics and are scared to ask more. News outlets and social media don't really help them get to grips with these situations, everyone is receiving chemotherapy and will therefore lose their hair and everyone is going to die right?   Wrong, the cancer story is changing.  Sure, many people do die of cancer, and that's heartbreakingly sad.  But today, many cancers are now treatable, many people survive, some even living with cancer like they would with a…
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Ronny Allan’s Weekly roundup – 7th to 13th October 2024

Ronny Allan’s Weekly roundup – 7th to 13th October 2024

Weekly roundup 7th - 13th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/11/5-blog-posts-worth-reading/ https://ronnyallan.net/2024/10/10/did-you-mean-to-lose-weight/ https://ronnyallan.net/2024/10/09/neuroendocrine-cancer-liver-directed-therapy/ https://ronnyallan.net/2024/10/07/ronny-allan-weekly-roundup-30th-september-6th-october-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing 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…
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5 blog posts worth reading

5 blog posts worth reading

Just click on the pictues and read (and hopefully 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), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a clinical service, trial/study or therapy…
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Neuroendocrine Cancer – Liver directed therapy

Neuroendocrine Cancer – Liver directed therapy

May 2026. Updated to include Transarterial Chemoperfusion (TACP) Neuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver, there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes-indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known to be highly vascular which is a feature where growth inhibition and symptom relief may be achieved by specific 'blocking' agents - this is particularly the case with liver metastases in well-differentiated Neuroendocrine Tumours (NETs). Spread to the liver…
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Ronny Allan – weekly roundup 30th September – 6th October 2024

Ronny Allan – weekly roundup 30th September – 6th October 2024

Weekly roundup 30th - 6th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/05/ronny-allan-feedback-recommendations-and-reviews/ https://ronnyallan.net/2024/10/04/ronny-allan-background-to-my-diagnosis-and-treatment/ https://ronnyallan.net/2024/10/03/neuroendocrine-neoplasms-high-grade/ https://ronnyallan.net/2024/09/30/a-review-of-september-2024-on-ronnyallan-net/ https://ronnyallan.net/2024/09/30/ronny-allans-weekly-roundup-23rd-29th-september-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing 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…
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Ronny Allan – Feedback, Recommendations and Reviews

Ronny Allan – Feedback, Recommendations and Reviews

I'm so proud to receive many reviews from many healthcare and cancer organisations.  The ones below are featured and the list below that is a selection of patient received comments separate from my Facebook recommendations.  Too many to repeat here and I even survived some of them as they no longer exist. Dr Mark LewisDr Eric Liu Dr Julie Hallet - NET Surgeon Dr Heloisa Soares - to follow Other Feedback received Josh Pyle, Senior Marketing Director for WEGO Health and Co-Founder of River Otter Interactive Inc ... " It is hard to find the quality of content and mix…
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Ronny Allan – Background to my Diagnosis and Treatment

Ronny Allan – Background to my Diagnosis and Treatment

Ronny Allan - Diagnosis and Treatment - Neuroendocrine Cancer From diagnosis to start of treatment The build-up to my diagnosis was covered in this blog article (Diagnosis - I'm no longer in Control).  This chance scenario led to a set of routine blood rests which highlighted a low haemoglobin score.  It was low enough to be referred to a specialist with the initial diagnosis being Iron Deficiency Anaemia.  After a plethora of tests including bloods, CT scan, Ultrasound scan and a liver biopsy (Ki67 5+), metastatic Neuroendocrine Tumour (NET) at Grade 2 was confirmed. During the secondary care diagnostic investigation,…
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A Review of September 2024 on RonnyAllan.NET

A Review of September 2024 on RonnyAllan.NET

Here is the monthly summary of September 2024 on RonnyAllan.NET The top post 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 post graphic to read it. 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 away for some of…
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Ronny Allan’s weekly roundup – 23rd – 29th September 2024

Ronny Allan’s weekly roundup – 23rd – 29th September 2024

Weekly roundup 23rd - 29th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/29/f-you-cancer-im-still-here/ https://ronnyallan.net/2024/09/28/cessation-of-somatostatin-analogues-after-prrt-in-mid-hind-gut-and-pancreatic-neuroendocrine-tumours-stopnet/ https://ronnyallan.net/2024/09/25/sometimes-you-gotta-climb-that-hill-even-if-you-dont-want-to/ https://ronnyallan.net/2024/09/24/i-am-not-a-zebra/ https://ronnyallan.net/2024/09/24/weekly-roundup-from-ronny-allan-16th-22nd-september-2024/ https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to browse my website Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs…
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F*** you cancer, I’m still here!

F*** you cancer, I’m still here!

On 26 July 2010, had you said I'd be writing this 14 years later, I would have said no.I was diagnosed on 26th July 2010.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought.  10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think.  Think great doctors, better treatments, better guidelines and sprinkle some luck on top.  Some might say attitude helps but clearly scientific proof might be lacking…
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Sometimes you gotta climb that hill, even if you don’t want to

Sometimes you gotta climb that hill, even if you don’t want to

When I was diagnosed, I was very compliant with my doctors and nurses.  Whatever test they wanted, I'd cooperate. Whatever hurdle they wanted me to jump over, I would jump.  I always had questions though, I find an inquisitive mind helps with coping. That's not to say I enjoyed each experience but what I knew it was required to move onwards to the next step - everything was on the critical path.  In particular, the liver biopsy was a challenge but totally necessary to get to the diagnosis which would then dictate treatment and prognosis.  Surgery for Stage IV small intestine…
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Weekly Roundup from Ronny Allan – 16th – 22nd September 2024

Weekly Roundup from Ronny Allan – 16th – 22nd September 2024

Weekly roundup 16th - 22nd September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance https://ronnyallan.net/2024/09/21/weekly-roundup-9th-15th-september-2024/ https://ronnyallan.net/2024/09/20/cabozantinib-for-advanced-neuroendocrine-tumours-another-tool-in-the-treatment-toolbox/ https://ronnyallan.net/2024/09/19/childhood-cancer-awareness-month-neuroendocrine-cancer-featuring-elizabeths-story/ https://ronnyallan.net/2024/09/19/the-trouble-with-the-net-it-can-spread-false-hope/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing 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…
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Weekly Roundup 9th – 15th September 2024

Weekly Roundup 9th – 15th September 2024

Weekly roundup 9th - 15th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Latest Blog Posts My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group.  It follows that supporting my blog is also supporting those other outlets.  Click on the 4 blogs below published over this period. https://ronnyallan.net/2024/09/09/weekly-round-up-2nd-8th-september-2024/ https://ronnyallan.net/2024/09/10/ever-wonder-what-caused-your-neuroendocrine-cancer/ https://ronnyallan.net/2024/09/11/neuroendocrine-cancer-turn-surveillance-into-a-positive/ https://ronnyallan.net/2024/09/15/eat-that-doughnut/ Blog posts currently trending (last 48 hours) My Facebook Acivity Public Page…
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CABOMETYX® (cabozantinib) for pNET and epNET

CABOMETYX® (cabozantinib) for pNET and epNET

16th April 2026 - NICE decision on funding Cabozantinib for treating advanced neuroendocrine tumours that have progressed after systemic treatment [ID6474] In development Reference number:GID-TA11613 Expected publication date: 21 May 2026 Final draft guidance After considering the feedback from consultation, the appraisal committee has prepared final draft guidance (FDG) on Cabozantinib for treating advanced neuroendocrine tumours that have progressed after systemic treatment [ID6474] and submitted it to NICE. The FDG has been sent to consultees for this appraisal who have 15 working days to consider whether they wish to appeal against it and/or notify us of any factual errors.  The FDG…
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Weekly round-up 2nd – 8th September 2024

Weekly round-up 2nd – 8th September 2024

Weekly round-up (2nd - 8th September 2024) News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Blog Activity My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group.  It follows that supporting my blog is also supporting those other outlets. What's new between 2nd Sept and 8th Sept 2024? My 2024 experience with Hives but what were the likely cause(s) - read more here Invisible…
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Palliative Care – it might just save your life

Palliative Care – it might just save your life

When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example.  Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared…
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A Review of August 2024 on RonnyAllan.NET

A Review of August 2024 on RonnyAllan.NET

Here is the monthly summary of what we all achieved in August 2024. Something new, something blue and some borrowed too!  The main headline is the announcment that my private facebook group now has 10,000 members.  This is further evidence that our cancer is not rare. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. August was another 25,000 blog views towards a projected annual increase over 2023. I wish I could do even more but there's just little old me!  And…
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CAR-T clinical trials for Neuroendocrine Cancer (plus bonus section on CAR-NK)

CAR-T clinical trials for Neuroendocrine Cancer (plus bonus section on CAR-NK)

Update 29th August 2025 Progress Seen in CDH17 CAR T Trial.  Chimeric Therapeutics has reported that a neuroendocrine cancer patient in the Phase 1 clinical trial of CAR T cell therapy has experienced tumour shrinkage.  In an update for investors on October 8, Chimeric reported 8 patients have been treated so far, with two more waiting for treatment. Two of the 8 have intestinal NETs.   Read more here. Update 4th June 2025 CAR T-Cell Therapy for Neuroendocrine Cancer, Now in Clinical Trial, Receives FDA FAST TRACK Designation.  Read more here.  Update 17th October 2024 First patient dosed.  Read more here.…
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Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Update 4th May 2026 - Ronny releases a Spotlight on Small Intestine NENs - click here to read Updated 12th April 2026.  New paper from known experts in NET surgery.  Definitely worth reading as it covers some areas which are considered controversial but very relevant to the situations than can arise in small intestine NET surgery. Recent 2026 paper from multiple experts across the world including but not  limited to Canada/UK/Europe/Mexico/Israel/USA "The current recommended approach for all patients with stage IV SI-NETs is for assessment by a multidisciplinary team with NET expertise, including a surgeon, and that strong consideration should…
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2024 Update from Ronny Allan: Reassuringly stable!

2024 Update from Ronny Allan: Reassuringly stable!

In every surveillance session I’ve had since diagnosis, there was always something to report.  Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings).  However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me.  That sentence alone probably translates to “stable“. After a surveillance event in 2021, I was awarded the accolade of “reassuringly stable“, a status which I was happy to accept! In 2022, despite evidence of disease, I was stable!  In 2023, I was given the headline of "No evidence…
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