Patient Advocacy

Summary of September 2026 on RonnyAllan.NET September was similar to the other months of this year but like July and August, views are down on the previous two months due to 3 weeks of holiday.  Still a reasonable blog performance - I can't complain.   Still managed to cover 3 new US FDA approvals!  I had many shares on many posts in September - know this, every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments, questions to ask about this, that and the other.

Some people appear to have a fascination with cancer colours.  Nothing wrong with that until it turns into a cult overshadowing everything else.  I saw the same issues coming out of bloggers of varying cancer types via my association with WEGO (now part of Health Union), particularly with Breast Cancer and their pink thing.  On a similar subject, I've seen quite a few posts entitled "Not all Cancer is pink".  I suspect it's a reference to the ubiquitous publicity that many women's cancer-related advocates, bloggers and organisations attract. Although, whether this is publicity that reflects reality or actually works, is another thing.

That was a long day and a hard walk!  Started at Steel Rigg and ended at Lanercost and we were accompanied by our friend and ex-Army colleague, Jim Waterson.  Jim and I served together in Germany 1977-79 and then again in Blandford Dorset 1983-84.  Usual banter all day brought back more memories and news about some old mutual friends.  Thanks to Jim for a great day. Thanks also to Jennifer for picking us up to take us to the start point on the wall and vice versa at the end.

Amneal launches first CGT‑designated U.S. generic lanreotide — what NET patients need to know Amneal has launched the first Competitive Generic Therapy (CGT)‑designated U.S. generic for lanreotide, a major milestone in a market long dominated by Ipsen’s Somatuline® Depot. The product — lanreotide injection 120 mg/0.5 mL in a sterile single‑dose prefilled syringe — is FDA‑approved as a fully substitutable generic and is now commercially available through U.S. specialty distribution.  Amneal announced the approval here. 1. Why Amneal’s approval matters Amneal’s lanreotide was approved through the FDA’s Abbreviated New Drug Application (ANDA)

I first wrote this blog early in 2015 and I borrowed the term 'Four More Years' from the US presidential election campaigns, a big topic at that time.  At the time of writing I had just celebrated being on Lanreotide for 4 years (my first treatment was 9th December 2010). Curiously I was only asking for another 4 years but my blog title meant I was somewhat restricted in choice of timescale!  I posted the original below. I now find myself writing a follow-up post 11 years later.  Had someone asked me if I thought I would be repeating this post title 11 years later, I would have said "most unlikely" based on…

Awareness

Patient Advocacy

Ronny Allan - Living with Neuroendocrine Cancer

I see so many questions and comments in my private group about sweating, in particular, 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the list of known symptoms directly attributed to any of the syndromes except for the group of catecholamine secreting tumours known as…

USA finally commits  UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type.  It was great to see this post from the American Society of Clinical Oncology, albeit the USA is joining later than many other countries confirming the worst-kept secret ever - NETs are not rare.  That said, several NET specialists in the USA have been more vocal about this (one example is below), much more so than the cancer organisations (including the ones who represent us) who disappointingly market the rare theme along with the antiquated use of words such as “carcinoid” which seems rifer in USA than many other parts of the world. 

Explore the concept of surveillance in health care, and how it plays a crucial role in early cancer detection and management.

It's only a couple of weeks since I celebrated my 16th year since diagnosis of metastatic small intestine Neuroendocrine Tumour (NET) at Grade 2 on 26th July 2010.  Thinking back to that period of my life, I'm happy but also slightly amazed to be celebrating such a long milestone having been diagnosed with cancer at Stage IV. I think it's a sign of many things, including but not limited to, early intervention by inquisitive healthcare professionals following vague symptoms, early access to a NET multidisciplinary team (MDT). Of course, human resilience must also be a factor.

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.

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.

Updated to include a Mayo Clinical study in 2026.  Before progressing, I wanted to emphasise this is not necessarily the same type of malabsorption caused by exocrine pancreatic insufficiency (EPI) which can potentially lead to something known as steatorrhea (amongst other things) but it can produce the same effect.  Steatorrhea is different from bile acid issues and is more related to fatty acids. But it's another piece of the diarrhea jigsaw. Bile Acid Malabsorption (BAM) and Bile Acid Diarrhea (BAD) Post-surgical diarrhea is probably something to expect in the early days and after time, adjustments can be made to cater for these side effects. 

Updated to include a Mayo Clinical study in 2026.  Before progressing, I wanted to emphasise this is not necessarily the same type of malabsorption caused by exocrine pancreatic insufficiency (EPI) which can potentially lead to something known as steatorrhea (amongst other things) but it can produce the same effect.  Steatorrhea is different from bile acid issues and is more related to fatty acids. But it's another piece of the diarrhea jigsaw. Bile Acid Malabsorption (BAM) and Bile Acid Diarrhea (BAD) Post-surgical diarrhea is probably something to expect in the early days and after time, adjustments can be made to cater for these side effects. 

When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment. It was hiding But it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor.  And what would this doctor have said at the time? I was never misdiagnosed because I was never diagnosed with anything that wasn’t already there and documented.

Updated 1 August 2026 This section of my website has been published and regularly updated since 2015 but the most recent updates to the World Health Organisation (WHO) Classifications for Digestive and Thoracic Systems are about to be published.  You may see these important publications called 'Blue Books'. Digestive Systems The main changes worth mentioning here is the addition of two new types of Gastric NETs -  Types IV and V, a genetic mutation and PPI related respectively.   A larger update will be added when the publication is available online.  

Patient Advocacy

Awareness

Patient Advocacy

A person with Neuroendocrine Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper. A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available.

One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default scenario as no intervention was possible without a symptomatic patient.

Inspiration

Patient Advocacy

Patient Advocacy

Update 4th July 2026. Data from the Phase 3 COMPETE trial - ITM11 Lu-edotreotide led to statistically significant and clinically meaningful improvements in progression-free survival. Efficacy and harms results support the use of Lu-edotreotide in early lines of therapy in patients with advanced, progressive GEP NETs. Bonus info about other trials for NET: 1.  There is also an ITM11 product on trial for more aggressive G2/G3 GEPNETs known as COMPOSE - click here 2.  An ITM11 product trial for Lung and Thymic NETs is running and currently in Phase 3 - known as LEVEL - …

Patient Advocacy

Diagnosing Neuroendocrine Neoplasms (NENs). It's no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can sometimes be difficult to see.  Plus, many patients present with relatively routine day to day symptoms suggesting a myriad of day-to-day illnesses seen daily in every GP/PCP practice. But conversely, many are found incidentally while checking for something else, or in reaction to a visit to the ER/A&E or as a referral by primary care physicians for further checks at secondary facilities.  A few examples:

Why do I need to write about this? I've been watching confusion surrounding symptomatic pancreatic NETs for years and it never ceases to amaze me that people automatically think "carcinoid syndrome".  Despite the fact that pancreatic NETs were never included in the category of "carcinoid tumours"; and despite the fact that there are at least 6 or 7 known pancreatic NET hormonal syndromes, this myth persists. Don't misunderstand me though, a serotonin secreting pancreatic NET is possible, it's just not nearly as common as it's made out in patient groups and on some websites.

Clinical Trials and Research

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.

Update 1st July 2026. This approval was being held up by legal processes after a patent dispute brought by Novartis subsidiary Advanced Accelerator Applications over their respective lutetium-177 (Lu-177) dotatate products.   However, a court victory on 17th June 2026 paves the way for Curium’s plans to provide targeted radioligand therapy to U.S. patients with GEP-NETs.  A new PDUFA (Prescription Drug User Fee Act) is awaited. (St. Louis. – 09 July 2024) – Curium, a world leader in nuclear medicine, announced today that it has submitted its 505(b)(2) New Drug Application for Lutetium Lu 177 Dotatate PRRT, which, if approved by the U.S.

Patient Advocacy

Many Neuroendocrine Tumours are small.  Nor my words but I first discovered the term in 2021 when reading the words of Dr Mark Lewis, Oncologist and NET Patient.  He himself, was citing this term referencing back to giants in the world of NETs over many decades.  There was a seminal lecture entitled "An Odyssey in the Land of Small Tumors".  Mark made the point in 2021 that there was still a lot to do in the land of small tumors (including the use of misnomer terms).  As another patient (but with a different type than Mark), my initial comment was "they may be small, but they can have a huge and lifetime impact on a person". 

Awareness

It’s a difficult disease to diagnose, e.g. many people struggle with undiagnosed syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Many continue to struggle after.  They hide in plain sight – sometimes the syndromes can provide clues ……… but they can still fool your doctors.   Let's change that with more awareness which can lead to earlier diagnosis. Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as…

Patient Advocacy

Message from Ronny in 2026.  Fake health news is now being spread on an industrial scale. I will try my best to counter that on my public pages and in my private where I see some members who have unwittingly believed what they read.  No matter where you look on social media, there are millions of sites claiming that 'this' and 'that' can cure cancer.  If you analyse some of the things that can apparently 'cure' cancer, you will normally find that behind these fantasies, there is someone selling something, a book, a video, a product.

Neuroendocrine neoplasms (NENs) have outgrown the “rare disease” label. e.g. Across the U.S., UK, Australia, and Canada.  They now rank among the most commonly diagnosed cancers — yet they remain under-recognised in mainstream healthcare circles, often misdiagnosed in primary and secondary care, but continue to be medically complex requiring specialist input which often arrives late. The Global Reality - examples These figures reflect improved diagnostics, rising awareness, and longer survival (thus the prevalence figures) — but they also expose a critical gap: prevalence has increased, but understanding has not appeared to keep up. 

Awareness

Clinical Trials and Research

Patient Advocacy

Neuroendocrine neoplasms (NENs) have outgrown the “rare disease” label. e.g. Across the U.S., UK, and Australia, they now rank among the most commonly diagnosed cancers — yet they remain under-recognised in mainstream healthcare circles, often misdiagnosed in primary and secondary care, but continue to be medically complex requiring specialist input which often arrives late. The Global Reality - examples These figures reflect improved diagnostics, rising awareness, and longer survival (thus the prevalence figures) — but they also expose a critical gap: prevalence has increased, but understanding has not appeared to keep up. 

Patient Advocacy

The NET Effect Series

Awareness

Patient Advocacy