Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Update February 2026. Before you read this, please note: Why Practice Is Changing Faster Than the Guidelines Modern peri‑operative management for neuroendocrine tumours is evolving rapidly, and several factors explain why clinical practice in some expert centres has moved ahead of formal guidelines: 1. New evidence challenges long‑held assumptions Recent surgical series — most prominently from OHSU Portland USA — show that prophylactic octreotide does not reliably prevent carcinoid crisis and that crises behave more like distributive shock, responding better to vasopressors than to somatostatin analogues. This directly contradicts decades of dogma. 2. Guidelines update slowly by design Bodies such…
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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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Weight – the NET Effect

Weight – the NET Effect

Foreword After my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment. Fast forward 4 years, I had to buy some more suits as my weight was going back on. Fast forward 14 years and…
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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 spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

Reviewed and updated 3rd July 2026 High Grade Neuroendocrine Neoplasms - the forgotten patient group? When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short.  Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming.  I too am guilty of having a large Facebook site falling into this category.  It's little wonder that those with high grade disease can often feel like the forgotten patient group. …
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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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Cessation of Somatostatin Analogues After PRRT in Mid, Hind-Gut and Pancreatic Neuroendocrine Tumours (STOPNET)

Cessation of Somatostatin Analogues After PRRT in Mid, Hind-Gut and Pancreatic Neuroendocrine Tumours (STOPNET)

One of the common question areas I see in my patient group of 10,000+ members is about the use of somatostatin analogues (SSAs) prior to, during and after treatment with Peptide Receptor Radionuclide Therapy (PRRT). On a similar subject, I also see people asking about stopping SSAs long term regardless of PRRT, particularly if they are NED and stable. People also ask about individual patients who have decided to stop them and how they managed etc.  Clearly these are difficult discussions and anyone reading should be listening to their doctors, not mimicking what they read on patient groups. But they are…
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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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Seriously, I’m not a zebra!

Seriously, I’m not a zebra!

One thing I've discovered when posting about this subject..... I'm not alone.  In fact, I was actually surprised how many people cannot abide the infatuation and borderline cultish adulation with black and white striped animal themed rubbish attached to everything they do (thus the cult tag).  It regularly emanates from certain parts (but thankfully not all) of the NET community, worryingly including certain doctors who should be focussed on Oncology, not Zoology. The main issue I have within the NET community is the 1940s thinking in the days when science and statistics were not advanced as they both are today.…
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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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Don’t be underactive with your Thyroid surveillance

Don’t be underactive with your Thyroid surveillance

From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range.  On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement.  One month after taking these drugs, my thyroid…
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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

6th August 2026 - FDA Tentative Approval for Omcazio: A New Cabozantinib Capsule Formulation Handa Pharmaceuticals announced that the U.S. Food and Drug Administration (FDA) has granted tentative approval to Omcazio (cabozantinib) capsules, a novel alternate-salt formulation of the well-established tyrosine kinase inhibitor (TKI). Developed under the Section 505(b)(2) regulatory pathway, Omcazio represents a pharmacological evolution of cabozantinib. Unlike current formulations, this capsule is engineered to improve drug absorption and has demonstrated no clinically significant food effect in bioavailability studies. While a tentative approval indicates the product meets all safety, effectiveness, and manufacturing quality standards, the drug is not yet available…
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Childhood Cancer Awareness Month – Neuroendocrine Cancer featuring Elizabeth’s story

Childhood Cancer Awareness Month – Neuroendocrine Cancer featuring Elizabeth’s story

September is Childhood Cancer Awareness Month!  The newspapers and social media have been featuring many childhood cancer articles. It's known that NENs do occur in childhood, particularly those associated with familial/hereditary syndromes including (but not limited to), Multiple Endocrine Neoplasia (MEN), hereditary Pheochromoctyoma/Paraganglioma (PPGL), familial medullary thyroid carcinoma (FMTC); Von-Hippel Lindau (VHL) syndrome.  But I also see young people diagnosed with sporadic (not hereditary) appendiceal Neuroendocrine Tumours (NET), most often incidentially found following appendicitis investigations.  There are very rare instances of sporadic findings in regular NENs of varying primary types (including Neuroendocrine Carcinomas (NEC)).I dedicate this post to Elizabeth Rooney…
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The trouble with the NET is that it can spread ……. false hope

The trouble with the NET is that it can spread ……. false hope

Hope is great, false hope is not.  Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer and how to treat it can lead to needless worry and even hinder good prevention and treatment decisions.  Even food and nutritional supplements fall into this area.  I see these things frequently in my own community, I don't like and I try my hardest to avoid these myths appearing…
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Eat that doughnut!

Eat that doughnut!

I was recently reminded of a post I wrote called "The Other 5 Es".  I later changed the name to "The 6 Es".  The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many. I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut".  What I didn't confirm was that I was using a metaphor i.e.…
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Neuroendocrine Cancer: turn surveillance into a positive

Neuroendocrine Cancer: turn surveillance into a positive

  It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance scans and other tests) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more…
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Ever wonder what caused your Neuroendocrine Cancer?

Ever wonder what caused your Neuroendocrine Cancer?

When you're diagnosed, you go through a whole host of emotions. It's not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words "you have cancer", it's other stuff such as anger and denial.  With the latter, the denial normally wears off as you finally accept the predicament.  In hindsight, the anger is interesting because there can be a mixture of thoughts including "why me", "what could I have done to head this off"; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my…
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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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Don’t worry, it’s benign!

Don’t worry, it’s benign!

One of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question. It’s been widely debated, and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant. Any standard cancer nomenclature definition of the word…
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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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Active Surveillance May Benefit Certain Patients With Small Nonfunctional Pancreatic NETs

Active Surveillance May Benefit Certain Patients With Small Nonfunctional Pancreatic NETs

Abstract. Results from a retrospective review demonstrated significant increases in the use of observation in patients with small nonfunctional pancreatic neuroendocrine tumors (NF-pNETs) from 2015 to 2020, as published in JAMA Surgery.  Researchers also found that patients seen at academic centers were more likely to undergo observation compared with those seen at nonacademic centers.Currently, experts are uncertain of the metastatic potential of NF-pNETs, and the potential morbidity linked with pancreatic surgery, as noted in the study. This may be associated with patients opting for surgery vs active surveillance, although recent guidelines endorse the use of active surveillance backed by retrospective data.The…
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Neoadjuvant 177Lu-DOTATATE for non-functioning pancreatic neuroendocrine tumours (NEOLUPANET): multicentre phase II study

Neoadjuvant 177Lu-DOTATATE for non-functioning pancreatic neuroendocrine tumours (NEOLUPANET): multicentre phase II study

Abstract. NEOLUPANET was a multicentre, single-arm, phase II trial, conducted between March 2020 and February 2023 at eight Italian institutions.  Patients- non-functioning pancreatic neuroendocrine tumours (NF-PanNETs) at high risk of recurrence, with positive uptake on 68Ga-labelled DOTA PET. They underwent neoadjuvant 177Lu-labelled DOTA0-octreotate (177Lu-DOTATATE) therapy followed by surgical resection at an acceptable complication rate, with no postoperative death. The majority of patients had a partial response without any progressive disease. Neoadjuvant means treatment given as a first step to shrink a tumour before the main treatment, which is usually surgery.  NF-PanNETs are more common than their functional counterparts. NF-PanNETs display…
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Tolerability and outcomes of neuroendocrine tumors treated with PRRT and SBRT

Tolerability and outcomes of neuroendocrine tumors treated with PRRT and SBRT

I've written about Peptide Receptor Radionuclide Therapy (PRRT) many times and also written summary of evidence of the use of Stereotactic Body Radiation Therapy (SBRT) in Neuroendocrine Neoplasms (NENs).  The latter is a type of external beam radiation therapy whereas the former is a totally different technique delivering radiation combined with somatostatin analogues via an intra-venous (IV) route.  Both have the same aim, to eradicate or reduce tumour bulk. SBRT is a 'next generation' type of External beam Radiation Therapy (EBRT) which as a treatment has been around for some time.  PRRT is relatively new.  EBRT in the form of SBRT…
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Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Update 4th September 2024.  I have been informed by a third party and trusted source that this upgrade to Lanreotide Ipsen injection device which I published in 2022, will not happen. Apparently, the project announced in 2022 never really got off the ground.  My own guess is that Ipsen's business case expenditure was too much risk given the rise of the generic Lanreotide meds around the same time, i.e. the return of investment (ROI) would not be recouped.I do not understand why Ipsen did not offer a lower price to remain competitive in UK and elsewhere.  It makes me think that…
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Serotonin – it’s a no-brainer!

Serotonin – it’s a no-brainer!

  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 does not constitute an endorsement of that service, trial/study or therapy by…
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Not every illness is visible

Not every illness is visible

I personally don't see myself as 'disabled' but I do have an invisible illness.  I can see it and I don't necessarily care if others don't.  I'm fit, can walk for miles, I even look quite healthy.  However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as 'disabled' through government schemes.  Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That's not to say I don't have any issues at all - because I do!…
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Hives (urticaria) The NET Effect

Hives (urticaria) The NET Effect

Background to why I created this blog post. For many years, I've read numerous comments and posts where people mention hives (full medical term urticaria).  As far as I know, this is an issue that has never bothered me all of my life ...... until recently.  I've never had any allergies other than certain cats and dogs (....I guess there might be a connection there).  I'm currently taking an anti-histamine tablet each day until the issue resolves.  My normal reaction to these changes is to research, so here is my research! The response in patient groups to questions about hives…
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Telotristat Ethyl (XERMELO) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues

Telotristat Ethyl (XERMELO) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues

Republished and reformatted and reviewed 1st September 2024.  Original published 31st March 2016. What is Telotristat Ethyl? Telotristat Ethyl is a significant introduction to the treatment of Carcinoid Syndrome diarrhea. It's the first addition to the standard of care in more than 16 years and the first time an oral syndrome treatment has been developed.  The drug was previously known as Telotristat Etiprate but was changed to Ethyl in Oct 2016. 'Etiprate' was previously a truncation of 'ethyl hippurate'.  The brand name is XERMELO®  Who is the drug for? The drug may be of benefit to those whose carcinoid syndrome diarrhea is not adequately…
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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 24th August 2026 "Chimeric Halts CAR T-cell Trial Enrolment, Shifts Approach" Chimeric Therapeutics has now stopped enrolment and dosing in the Phase 1 trial after side effects were observed at the highest dose level. The company will not continue developing this version of the CAR T-cell therapy but believes CDH17 remains a valid target and plans to pursue a new in vivo approach. So, what happens next?  Chimeric is now advancing a different approach: an in vivo delivery method for a CDH17-directed CAR T-cell therapy. Rather than modifying a patient’s T cells outside the body, as in the current trial,…
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Neuroendocrine Cancer: I Can

Neuroendocrine Cancer: I Can

Most people with an incurable Cancer will go through both good and bad periods.  I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point.  I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". I don't like playing the victim so I'm just trying to make my new normal ..... normal!  And I make no apologies for my approach.  So, when I wrote my blog post "Living with…
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Serotonin – the NET effect

Serotonin – the NET effect

This blog provides general educational information only. It does not offer medical advice, diagnosis, or treatment. Patients should always consult their clinical team for personalised guidance. Background I'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Tumour (NET) patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to…
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Let’s be clear about Neuroendocrine Tumours – it’s a cancer!

Let’s be clear about Neuroendocrine Tumours – it’s a cancer!

Dear Readers Another week and another discussion about 'benign vs malignant' in my group. Let's put that into context and dispel one big myth. I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a 'catch-all' term for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). Notwithstanding the fact that there is a Grade 3 NET nowadays, the former is often described as 'slow-growing or 'indolent' in behaviour and the latter is almost always faster growing and a more aggressive cancer. NEC is also frequently…
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The 5 E’s (of Carcinoid Syndrome)

The 5 E’s (of Carcinoid Syndrome)

The 5 Es was a good idea but the boundary was never properly defined.  I don't believe it applies to all NETs (including patients) and I don't believe it is necessarily confined to carcinoid syndrome Original Post Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid…
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Chemo or not Chemo – that is the question 

Chemo or not Chemo – that is the question 

I often see certain drugs for the treatment of Neuroendocrine Tumours (NETs) described as "chemotherapy". Although since I wrote the first edition of this post in 2016, I don't see it as much today in 2024.  Education is a wonderful thing! I think there must be some confusion with more modern drugs which are more targeted and work in a different way to Chemotherapy.  According to Mayo Clinic: "In many ways, cytotoxic chemotherapy is "targeted" at specific molecules that regulate progression through the cell cycle; however, these targets are generally not specific for tumour cells. Because systemic cytotoxic chemotherapy targets…
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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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Don’t worry, I really am OK!

Don’t worry, I really am OK!

I read an interesting article in the BBC entitled "Why people keep quiet about their battle with cancer" and a similar article from Fred Hutch in USA "Why people keep quiet about their battle with cancer" is also interesting reading. The usual range of reactions and fears can be found in these stories and it made me think about my own experience. I think there are two key themes involved here: Talking about Cancer Managing your illness Firstly, as I have an international audience, I thought I'd introduce what might not be a well-known British trait - the 'stiff upper lip'.  For the uninitiated, I'm…
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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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I can see my invisible illness

I can see my invisible illness

As I ponder my annual surveillance this summer and wonder what will be discussed, I also think about how far I've travelled and what I have been able to do.  It's more than I thought I'd be able to do, I didn't expect to still be here. Often, I feel lucky.  Perhaps an odd thing to say when I'm living with Stage IV cancer.  But those cards were dealt in 2010, and I now play with a new deck where I do have some control over how those cards are played.  As long as it's not a flush! No pity…
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Incidental findings and Incidentalomas – NET or NOT

Incidental findings and Incidentalomas – NET or NOT

Incidental findings and Incidentalomas - NET or NOT During my diagnostics, I presented to my general practitioner as someone with symptoms of iron deficiency anaemia with some weight loss (not a lot but some).  The GP at this point had no alternative but to refer me to secondary care where they had the tools to investigate further - e.g. imaging and endoscopies. The use of laboratory testing and imaging devices are there to not only back up the a doctor's clinical hypotheses but also to test them, i.e. these laboratory tests and imaging checks may lead to others. Differential checks…
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Renal Cysts – something or nothing?

Renal Cysts – something or nothing?

When I was diagnosed and subjected to several CT scans, each one noted the existence of a renal cyst.  I was told it was nothing to worry about although I did find the size worrying on the basis I didn't think the average kidney could be so big to house a 55mm cyst!  That was back in 2010 and they still mention that cyst today, but it no longer worries me other than it is now 67mm.  Like many cysts in the human body, these incidental findings on diagnosis are pretty common. How Common are Renal Cysts Simple renal cysts…
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Neuroendocrine Cancer – I didn’t hear it coming

Neuroendocrine Cancer – I didn’t hear it coming

A Neuroendocrine Cancer awareness post by Ronny Allan.  The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned.  However, some cancers are in the 'difficult to diagnose' category. Certain types of Neuroendocrine Tumours (NETs) are in this difficult to diagnose category due to the vague symptoms which may be mistaken for other diseases and routine illnesses.  However, in many cases which don't seem to make the statistics, it can be incredibly quiet leading to incidental diagnosis including at an advanced stage. It's SNEAKY! Every year the advocacy organisations push out skewed…
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Biopsies – tissue is the issue!

Biopsies – tissue is the issue!

First published 19th July 2023.  Major update on 6th August 2024 to including key marker and histopathological tissue biomarkers used in Neuroendocrine Neoplasms (NENs).  My diagnostic background On 19th July 2010, I had a liver biopsy.  This followed some low haemoglobin (Hb) and some weight loss reported to my GP surgery in May, I met with a specialist on 8th July and after sending me straight for a CT scan on the same day, the output from that CT confirmed something was drastically wrong. Clearly CT scans don't diagnose cancer including grade, so I eventually had to have a liver…
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