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systemic treatment [ID6474] In development Reference number:GID-TA11613 Expected publication date: 21 May 2026 Final draft guidance After considering the feedback from consultation, the appraisal committee has prepared final draft guidance (FDG) on Cabozantinib for treating advanced neuroendocrine tumours that have progressed after systemic treatment [ID6474] and submitted it to NICE.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…
Read More
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…
Read More
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…
Read More
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.…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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 external beam radiotherapy 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.  External beam (EB) has been around for some time but PRRT is relatively new.  That said, EB in the form of SBRT is state of the art EB radiotherapy. I will link in those two blog…
Read More
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…
Read More
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…
Read More
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!…
Read More
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…
Read More
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…
Read More
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…
Read More
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.…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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…
Read More
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 are not misdiagnoses, they are part of the…
Read More
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.  Like many cysts in the human body, these incidental findings on diagnosis are pretty common.  How Common are Renal CystsSimple renal cysts are very common, and the incidence increases with…
Read More
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…
Read More
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…
Read More
Clinical Trial:  177Lu-DOTATATE Modified Delivery Based on Individualized Dosimetry (LUMOD-ID)

Clinical Trial: 177Lu-DOTATATE Modified Delivery Based on Individualized Dosimetry (LUMOD-ID)

What is the LUMOD-ID trial? This is a randomized controlled clinical trial evaluating the impact of forward planning dosimetry for Lutetium-177 DOTATATE (Lutathera, Novartis Pharmaceuticals), a radiopharmaceutical approved to treat neuroendocrine tumors by the U.S. FDA. The primary outcome measure is to determine objective response rate in patients with grade 1 or 2 gastroenteropancreatic neuroendocrine tumors (GEP-NET) treated with dosimetrically-determined LUTATHERA administration compared to active control.  This is done at 6 months after treatment completion along with a secondary outcome correlation of hematologic toxicities every 6 months for 5 years.  The remaining secondary outcome measures are after 5 years to…
Read More
Neuroendocrine Cancer – it takes guts

Neuroendocrine Cancer – it takes guts

The majority of Neuroendocrine Tumours (NETs) are slow growing (well differentiated).  However, many tumours can be silent (non-functioning) for some years before they start to 'function' and inform you of their presence.  Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments.  Moreover, in most cases, the appearance of a functional tumour often indicates the disease has metastasised and could now be incurable. Some tumours will grow and metastasise without syndromes, i.e. they are non-functional. These may become functional at some point in the future. However, with most slow-growing NETs, this…
Read More
14 years since diagnosis, I’m still here

14 years since diagnosis, I’m still here

I finally made 14 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris, my wife of 49 years.I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes, and…
Read More
Clinical management of typical and atypical carcinoids/neuroendocrine tumors in ENETS centres of excellence (CoE): Survey from the ENETS lung NET task force

Clinical management of typical and atypical carcinoids/neuroendocrine tumors in ENETS centres of excellence (CoE): Survey from the ENETS lung NET task force

Continuing with the output of updated clinical guidelines from ENETS, this paper is unlike the others so far in 2022/23/24 where the guidelines were set against several clinical questons for particular scenarios (presumably common in the NET patient population).  So far,the clinical guidelines have centred on Gastroenteropancreatic Neuroendocrine Neoplasms (GEP NENs) (Neuroendocrine Carcinoma (NEC) and Neuroendocrine Tumours (NET)). The latest output comes in a different format than the GEP NEN output but is based on Lung NETs, i.e. well differeniated Lung NETs. I'm hoping it is a precurser to a set of updated Lung NEN guidelines.  Although, as you will…
Read More
Neuroendocrine Cancer:  Glossary of Terms

Neuroendocrine Cancer: Glossary of Terms

Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer sites. How to use this list: 1. If your term begins with an A, see the list of As etc.  Ditto for B to Z.  Select your term from the list, the definition will show along with any of my blogs where that term is mentioned – this adds context. . 2. Numerical terms are also listed. Please note I’m constantly working on the repository to clean up all definitions, adding and removing links where necessary, and…
Read More
Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors

Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors

Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine TumorsUpdated 31st July 2024 to add Phase 1 results and info regarding Phase 2. Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors - What is PRRT?I'm guessing most of my readers know what Peptide Receptor Radiotherapy (PRRT) is.  But for those new to this field, read more hereWhat is Triapine?Triapine is a ribonucleotide reductase (RNR) inhibitor, I.e. it helps repair DNA.  When I research this drug, I can see it is used in numerous examples of clinical trials in an anti-cancer setting alongside radiotherapy and chemotherapy, in many cancers.Triapine in…
Read More
A Review of July 2024 on RonnyAllan.NET

A Review of July 2024 on RonnyAllan.NET

Here is the monthly summary of what we all achieved in July 2024. Something new, something blue and some borrowed too!  Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. 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. I was literally  on holiday for the enture month of July but still managed over 25,000 blog views. I wish I could do more but there's just little old me!  And Chris too of…
Read More
Lanreotide for Lung NETs – SPINET Clinical Trial

Lanreotide for Lung NETs – SPINET Clinical Trial

Reviewed and updated 30th July 2024.  Phase III trial data update. Update 30th July 2024. This trial had a low particpation repsonse.  Experts cited the main reason was the increasing use of SSAs for Typical and Atypical Lung NETs in clinical practice; as such, patients were reluctant to enroll in this study, with the risk of receiving a placebo, when they could access the active treatment with a prescription. The above is unfortunate but perhaps the wording of some approvals caused confusion about scope. Together with pragmatic compassionate use in cliniclal practice this has perhaps had an adverse affect in…
Read More
The Hidden Pheochromocytoma

The Hidden Pheochromocytoma

I've written a few times about Pheochromocytomas and Paragangliomas, allegedly rare types of Neuroendocrine Tumour (NET).  I've also written about various hidden diagnoses of NET cases where they are eventually found in living patients having been 'hidden' within other diseases, i.e. misclassified in cancer registries or even not classified as cancer at all.  If you read any medical site (including hospitals which treat Pheochromocytoma) you will note statements along the lines of "mostly benign" - so it's possible the incidence rate is vastly understated on this factor alone. The other interesting data I found is that many are not discovered…
Read More
I’m still here

I’m still here

I didn't expect to be here but I am I was diagnosed with metastatic Neuroendocrine Tumours (NETs) on 26th July 2010.  Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions.  I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do. There are several types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis,…
Read More
A Neuroendocrine Cancer diagnosis:  I didn’t even feel ill

A Neuroendocrine Cancer diagnosis: I didn’t even feel ill

I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy.  I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'.  I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp…
Read More
Diabetes – The NET Effect

Diabetes – The NET Effect

Updated January 2026Originally published September 2018. My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream. Bubbling behind the scenes and clamouring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes with a score…
Read More
I’m not sick, I just have cancer

I’m not sick, I just have cancer

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call…
Read More
Neuroendocrine Cancer: The Perfect Storm

Neuroendocrine Cancer: The Perfect Storm

The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UKAs featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation)It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed.  I'm one of the lucky ones, even though I still ended up with distant metastases.  It does feel odd to say that having distant metastasis is lucky!I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for…
Read More
Sometimes you just gotta climb that hill!

Sometimes you just gotta climb that hill!

It was a little bit foggy, wet, windy and very cold and that was at the bottom of the hill we were looking up at. It wasn't a terribly big hill, but I knew it would need considerable effort and some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we simultaneously said, "do we really want to go up that in this weather?"  Oh yes ....... no pain, no gain! So, we went up the hill and it hurt. Up there, it was wetter, windier and much…
Read More
Alcohol – the NET Effect

Alcohol – the NET Effect

Opinion.  First published in January 2016. Social Media is currently full of 'Dry January' articles and of course many charities will benefit as people will be motivated if they are abstaining from alcohol for a good cause. Nothing wrong with that and no doubt some individuals will also see it as a way to cut down or at least lessen the effects of a very wet December! I've never been a big drinker but I do like the odd beer now and then.  When I was diagnosed with metastatic Neuroendocrine Tumours (NETs), I hadn't really thought much about how this might affect my body. It wasn't…
Read More
Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

I first published this blog post after the dust settled on the media coverage of the death and funeral of Neuroendocrine Cancer patient Aretha Franklin.  I was saddened by the death of this icon of the music industry but more determined to speak out about the need for our community to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and incredibly, including doctors. About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the…
Read More
European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumours

European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumours

Small Intestine NETs The latest European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumours As someone who was diagnosed with metastatic small intestine NETs in 2010, I've clearly written many words about my own experience and how I was treated.  However, I've also researched extensively about these issues including previous guidelines for the management of these common but complex tumours. They are mostly indolent, but they can be aggressive; they are legendary spreaders, often in silence. They can cause  damage before and after diagnosis, and it is these tumours that are predominately…
Read More