26 Sep 2026
By Ronny Allan
0 Comments
Amneal Lanreotide Approved by US FDA

Amneal Lanreotide Approved by US FDA

Patient Advocacy, Treatment, ,
  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.As you can see, the injection device is very similar to the original Ipsen reference drug.  1. Why Amneal’s approval matters Amneal’s lanreotide was approved…
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25 Aug 2026
By Ronny Allan
0 Comments
External Beam Radiation Therapy (EBRT) for Neuroendocrine Neoplasms

External Beam Radiation Therapy (EBRT) for Neuroendocrine Neoplasms

Clinical Trials and Research, Patient Advocacy, Treatment, ,
Disclaimer: The information in this section is for education only and does not represent a standard care pathway or service. These treatments are not suitable for everyone, and careful patient selection by an experienced multidisciplinary team is essential. Always discuss your individual situation with your own specialist team.   External Beam Radiation Therapy (EBRT) is an established medical treatment with roots dating back to the late 19th century, but modern EBRT is far more precise, and new technologies now allow safer treatment of tumours that were previously difficult to target. It uses high‑energy beams to damage cancer cells.   The…
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24 Jun 2026
By Ronny Allan
0 Comments
Clinical Trials PRRT: From 177Lu to 225Ac: The DOTA-LM3 Antagonist Journey

Clinical Trials PRRT: From 177Lu to 225Ac: The DOTA-LM3 Antagonist Journey

Clinical Trials and Research, Patient Advocacy, Treatment, ,
  Disclaimer: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 Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals. The evolution of peptide receptor radionuclide therapy (PRRT) has always been driven by a simple idea: if we can deliver more energy to the tumour while sparing normal tissues, outcomes will improve. For years, the…
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22 Jun 2026
By Ronny Allan
0 Comments
SYHX2008: A New Self‑Injectable subcutaneous Long‑acting Octreotide on the Horizon for NETs

SYHX2008: A New Self‑Injectable subcutaneous Long‑acting Octreotide on the Horizon for NETs

Clinical Trials and Research, Treatment
Disclaimer: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 Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals. A new long‑acting octreotide formulation is emerging that could expand treatment options for people with gastroenteropancreatic neuroendocrine tumours (GEP‑NETs). SYHX2008, developed by CSPC Pharmaceutical Group, is a once‑monthly, pre‑filled, subcutaneous long‑acting octreotide designed for self‑administration. For…
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12 May 2026
By Ronny Allan
0 Comments
200 Lanreotide Injections: A Milestone in Long‑Term Neuroendocrine Tumour (NET) Management

200 Lanreotide Injections: A Milestone in Long‑Term Neuroendocrine Tumour (NET) Management

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. Two hundred injections. It’s a milestone that carries weight — not because of the number itself, but because of what it represents: continuity, stability, and the lived reality of managing Neuroendocrine Cancer over the long term. Lanreotide has been part of my life since 2010, and today’s dose marks more than a treatment event — it marks a journey shaped by science, routine, and resilience.   What Lanreotide Does — and Why Deep‑Subcutaneous Matters Lanreotide is a long‑acting somatostatin analogue designed to bind to SSTR2 on neuroendocrine tumour…
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12 Apr 2026
By Ronny Allan
0 Comments
Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment

Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment

Patient Advocacy, Treatment, , , , ,
DisclaimerThis information is for education and reassurance only.It is not a substitute for personalised medical advice, diagnosis, or treatment. Bone metastases in neuroendocrine tumours (NETs) vary widely in behaviour, appearance, and clinical significance. Decisions about systemic therapy, radiotherapy, ablation, bone‑targeted agents, surgery, or monitoring must be made by your own specialist NET team, who understand your full medical history, imaging, pathology, and symptoms. Every patient’s situation is unique.The treatments described here — including somatostatin analogues, PRRT, targeted therapies, chemotherapy, radiotherapy, ablation, bone‑targeted agents, and surgical stabilisation — are used differently depending on tumour type, receptor status, bone stability, symptoms, and…
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27 Mar 2026
By Ronny Allan
0 Comments
Understanding Differentiation, Ki‑67, Mitotic Count, Hotspots, Pathology Workflow, and Primary–Metastasis Heterogeneity in Neuroendocrine Neoplasms (NENs)

Understanding Differentiation, Ki‑67, Mitotic Count, Hotspots, Pathology Workflow, and Primary–Metastasis Heterogeneity in Neuroendocrine Neoplasms (NENs)

Patient Advocacy, Treatment, , , , , ,
Before you read this… This article discusses pathology concepts such as Ki-67, grading, heterogeneity, and biopsy findings in neuroendocrine tumours (NETs). It is provided for educational purposes only and does not interpret any individual pathology report or scan result. Ki-67 values, tumour grade, and sampling limitations can vary between different biopsies and over time. Their meaning depends on the full clinical context, including imaging, symptoms, and multidisciplinary review. Only your own specialist team can explain what your specific Ki-67, grade, or pathology findings mean for you. No treatment decisions should be made based on this article alone. Neuroendocrine Neoplasms (NENs)…
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26 Mar 2026
By Ronny Allan
0 Comments
Why liver transplant is back in the NET conversation

Why liver transplant is back in the NET conversation

Patient Advocacy, Treatment, ,
Before you read this… This article is provided to support understanding of a complex and evolving topic. It explains how liver transplant is being explored in a very small number of NET patients, but it is not suggesting that this treatment is suitable for you or anyone else. Every NET case is unique. Only your own specialist team can assess your individual situation and advise on the options that may be appropriate for you. 1. Big picture: why liver transplant (LT) is back in the NET conversation Rationale: For a very small, highly selected subset of patients with unresectable liver-only…
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19 Mar 2026
By Ronny Allan
0 Comments
Blood Clot risks in Neuroendocrine Neoplasms (NENs)

Blood Clot risks in Neuroendocrine Neoplasms (NENs)

Patient Advocacy, Treatment, , , , , ,
I have a personal interest in this subject because I had pulmonary emboli (PE) diagnosed in January 2011 around 6 weeks after I had major surgery.  I got a phone call from the hospital to go down that day and meet with a nurse who would teach me to self inject 'Clexane'(Enoxaparin) and then take away a stock which was to be issued in future via the normal prescription system. The PE soon cleared up shortly after being found but my Oncologist advised me to keep taking blood thinners to reduce risk. After many years of these daily injections, I…
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29 Oct 2025
By Ronny Allan
0 Comments
European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for appendiceal neuroendocrine tumours (aNET)

European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for appendiceal neuroendocrine tumours (aNET)

Latest ENETS Guidelines, Treatment, , ,
European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for appendiceal neuroendocrine tumours (aNET) Appendiceal neuroendocrine tumours (aNET) account for 50%–77% of all appendiceal neoplasms and are mostly identified incidentally following appendicectomy for acute appendicitis or after a laparotomy performed for unrelated reasons. In the great majority, aNET are low grade (>80% grade 1 (G1)) and very rarely, if ever, are associated with a secretory syndrome. This post is part of my ENETS Guideline series and supplements my Spotlight series article which can be found by clicking here. TABLE 1. Nine clinical questions for aNET scenarios. Q1 – What is the current…
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13 Oct 2025
By Ronny Allan
0 Comments
10 Random Blog posts Set 1 – RonnyAllan.NET

10 Random Blog posts Set 1 – RonnyAllan.NET

Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, The NET Effect Series, Treatment
10 Random Blog posts Set 1 - RonnyAllan.NET WelcomeA new series of random blogs that are not only informational, but also relevant. Carefully selected by the author.Thanks for reading.  Feedback welcome. Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption The Cancer Legacy of Steve Jobs Cancer-related fatigue (CRF) - The NET Effect Jimmy Buffett 1946-2023 - Neuroendocrine Carcinoma (Merkel Cell Carcinoma) Cancer Ablation Meet Edison® Histotripsy System - powerful bubbles   Lower grade higher stage NETs - slow motion, chronic and indolent?   Neuroendocrine Cancer Awareness - let’s move into the 21st century   Living with NETs - nobody…
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25 Sep 2025
By Ronny Allan
8 Comments
Immunotherapy and Neuroendocrine Neoplasms

Immunotherapy and Neuroendocrine Neoplasms

Clinical Trials and Research, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Updated 24th September 2025. Introduction There's a lot of Immunotherapy stuff out there!  The picture regarding its use in Neuroendocrine Neoplasms is not clear and there is no general roadmap printed.  I first heard of Immunotherapy for NETs following attendance at ENETS 2017 in Barcelona. The presentation that sticks out was one given by Dr Matthew Kulke, a well-known NET Specialist in Boston. My reaction to the presentation was one of 'expectation management' and caution i.e. it's too soon to know if we will get any success and when we will get it. He also hinted that it's more likely…
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14 Aug 2025
By Ronny Allan
0 Comments
Surgery is risky but so is driving a car

Surgery is risky but so is driving a car

Treatment, , ,
I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks, and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn of 2010 when I first met my surgeon. At that time, there were a few articles about whether surgery or ‘biologic agents was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs). To some extent, these debates continue, particularly…
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09 Aug 2025
By Ronny Allan
0 Comments
NETTER-3 – Clinical Trial: [177Lu]Lu-DOTA-TATE in Patients With Grade 1 and Grade 2 Advanced GEP-NET

NETTER-3 – Clinical Trial: [177Lu]Lu-DOTA-TATE in Patients With Grade 1 and Grade 2 Advanced GEP-NET

Clinical Trials and Research, Patient Advocacy, Treatment, ,
Why is this trial important? The results of NETTER-2 provided important evidence for using Lutathera ([177Lu]Lu-DOTA-TATE) earlier in the treatment pathway for patients with advanced, somatostatin receptor-positive (SSTR+) Grade 2 and Grade 3 well-differentiated GEP-NETs. In particular, NETTER-2 investigated Lutathera as a first-line treatment, rather than waiting for disease progression on somatostatin analogue (SSA) therapy.  NETTER-1 addressed a different clinical question. It investigated [177Lu]Lu-DOTATATE in patients with progressive, SSTR-positive midgut NETs and therefore was not designed to establish PRRT as a first-line treatment for newly diagnosed disease.  NETTER-3 takes that question into the lower-grade setting.  This Phase III trial is evaluating the efficacy…
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16 Jul 2025
By Ronny Allan
0 Comments
Ronny Allan’s Glossary of Terms (Basic Edition)

Ronny Allan’s Glossary of Terms (Basic Edition)

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, The NET Effect Series, Treatment, ,
Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top cancer/Neuroendocrine Cancer sites.  This version is a simple combination of an intelligent search (e.g. type first character to filter etc) plus a simple long list of all the terms in my repository. But each has a link which will direct you to the definition of the term plus where applicable, links to any of my articles where I have tagged this term (therefore providing added context).Please note I’m constantly working on the repository to clean up all definitions, adding…
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29 Jun 2025
By Ronny Allan
6 Comments
A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO) – Oczyesa

A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO) – Oczyesa

Clinical Trials and Research, Treatment, , , , , ,
Latest on NET.  Camurus announces completed enrolment in the Phase 3 SORENTO study of CAM2029 in patients with neuroendocrine tumours December 14, 2023 at 02:01 am EST Lund, Sweden - 14 December 2023 - Camurus (NASDAQ STO: CAMX) today announces completed enrolment in the randomized, active-controlled Phase 3 SORENTO study evaluating the efficacy and safety of octreotide subcutaneous depot (CAM2029) in patients with neuroendocrine tumours located in the gastrointestinal tract or pancreas (GEP-NET). "The enrolment of patients in SORENTO has exceeded expectations. Going forward, we will continue to collect data for the primary endpoint assessment of superiority in progression-free survival with CAM2029 compared to…
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27 Jun 2025
By Ronny Allan
0 Comments
DLL3 Expression in Neuroendocrine Neoplasms – an overview

DLL3 Expression in Neuroendocrine Neoplasms – an overview

Clinical Trials and Research, Treatment, , , , , ,
Updated 20th August 2025 Background - Conventional therapeutic targets for neuroendocrine tumours (NETs) include somatostatin receptors (SSTRs), mammalian Target of Rapamycin (mTOR), Vascular Endothelial Growth Factor (VEGF), and tyrosine kinases. These pathways are crucial for tumour growth, survival, and angiogenesis. The most well known is SSTRs given that most NETs express these and allows targeted therapies such as somatostatin analogues (SSA) and peptide receptor radionuclide therapy (PRRT) to be used. Other targeted therapies like everolimus and sunitinib, which inhibit mTOR and tyrosine kinases respectively.  Sunitinib also targets VEGF as does cabozantinib. For neuroendocrine carcinomas (Grade 3 poorly differentiated), targeting has…
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12 May 2025
By Ronny Allan
0 Comments
Neuroendocrine Tumours – now you see them, now you don’t!

Neuroendocrine Tumours – now you see them, now you don’t!

Treatment, , , , , , , , , , , ,
In my post entitled "If you can see it, you can detect it", I listed the different types of scanning techniques and technology to find evidence of disease in Neuroendocrine Tumours (NETs).  Of course, while scans, blood and (current) marker tests can give some pretty big and important clues, "tissue is the issue" that is most efficient Even after formal diagnosis, seeing all the tumours can be a challenge with NETs.  In the article I quoted above, I indicated that scans for NETs can be analogous to picking 'horses for courses'. For example, most NETs have somatostatin receptors and can…
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26 Apr 2025
By Ronny Allan
6 Comments
Catch up on Ronny Allan’s Blog

Catch up on Ronny Allan’s Blog

Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, Treatment
You guys lead busy lives but the aim of this article is to help you catch up. Below are the most read posts in the last 7 days.  Click on anything that takes your fancy.  Many thanks.  To read any article, just click on the title/picture below Latest from Instagram Select of category of posts you'd like to see 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…
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15 Mar 2025
By Ronny Allan
29 Comments
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
After years of avoiding pancreatic enzyme replacement therapy (PERT) since a 2010 diagnosis, I finally asked for some on a trial basis at the end of 2017.  To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs).  I've always known I've had some digestive issues related to malabsorption. However, I'm wasn't losing weight - this has been stable for some years (but see below).  Plus, my key vitamin levels (B12 and D) were in range.  However, I had been struggling with a lot of bloating issues, thus…
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13 Mar 2025
By Ronny Allan
4 Comments
Histotripsy – the case for use in UK as Histosonics was awarded early market access

Histotripsy – the case for use in UK as Histosonics was awarded early market access

Clinical Trials and Research, Patient Advocacy, Treatment, , ,
Hot off the press - 10 Mar 2026 Wellington Hospital London is now the first independent hospital in Europe to offer Histotripsy.  Clearly treatment at this hospital will need to be funded by the individual or covered by a private healthcare insurance policy.Click here to read more. Hot off the press - 22 Oct 2025 Cambridge treats first NHS cancer patient  A Cambridge patient has become the first person in Europe to receive cutting-edge histotripsy treatment outside of a clinical trial, after the technology was fast-tracked by the Government - marking a major milestone in NHS cancer care. Addenbrooke’s is…
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08 Mar 2025
By Ronny Allan
0 Comments
Small intestine, large surgery

Small intestine, large surgery

Patient Advocacy, Treatment, , , , , ,
Edited and reviewed 4th September 2024 My own experience At my diagnostic consultation, the Oncologist told me I had Stage 4 metastatic Small Intestine NET (SI NET). He also told me that surgery would almost definitely be on the cards and would be referring me to an experienced surgeon in a different hospital for assessment. I was assured this surgeon was one of the most experienced in the south of England for NETs. This was before the current multi-disciplinary team was set up, but it did all seem so very organised and I felt comfortable, albeit apprehensive. Worth pointing out…
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20 Feb 2025
By Ronny Allan
18 Comments
Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

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

Living with Neuroendocrine Cancer, Survivorship, The NET Effect Series, Treatment, , , , , , , , , , , , , , , , , , , , ,
A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of…
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18 Feb 2025
By Ronny Allan
2 Comments
Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Treatment, , , ,
Updated 27th February 2026 My experience with lymph node surgery - 27th February 2012 As a metastatic Small Intestine NET case, I had the usual bulky chains of lymph node metastases in or around the mesentery that frequently appear with an abdominal primary. Most of these were removed during my primary resection. I still have some suspicious lymph nodes in the peri-aortic region, potentially responsible for my retroperitoneal fibrosis, another strange issue I live with.However, I also had some 'distant nodes' above the diaphragm. My surgeon described my 'distant' lymph node issues as an 'unusual disposition' of tumours. These were …
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16 Feb 2025
By Ronny Allan
2 Comments
Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

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

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

Humour, Inspiration, Survivorship, Treatment, , , ,
  Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Read about my experience with Lanreotide - click here Thanks for reading Ronny     I also have PoNETry on Invisible Illness - click here Click here and answer all questions to join my private Facebook group      
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24 Jan 2025
By Ronny Allan
16 Comments
Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?

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

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

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

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , ,
Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me).  Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors.  If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…
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21 Jan 2025
By Ronny Allan
12 Comments
Neuroendocrine Cancer – my liver surgery April 2011

Neuroendocrine Cancer – my liver surgery April 2011

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

Ronny Allan – Every picture tells a story

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

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Treatment, , , , , , , , , , , , , , , , , , , ,
Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. Updated and reviewed 15th January 2025. Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved.  So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone over secretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors.  They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there…
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13 Jan 2025
By Ronny Allan
2 Comments
Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 2)

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

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

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

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

Neuroendocrine Cancer: Watch and wait or watch and worry?

Patient Advocacy, Survivorship, Treatment, ,
Watch and wait Not all cancers are the same. Not all Neuroendocrine Cancers are the same either! The technical term is heterogeneity and the term "Neuroendocrine Neoplasms are a group of heterogenous tumours" is commonly found in many texts. Some cancers grow quickly but many grow slowly, or even very slowly. When you are diagnosed with some types of cancer, you might not need treatment straight away. Doctors then monitor you with regular check ups and tests. They sometimes call this 'watch and wait'. Watch and wait means that you have cancer, but you do not need treatment straight away.…
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09 Dec 2024
By Ronny Allan
0 Comments
Lanreotide – 15 years – “if it ain’t broke, don’t fix it”

Lanreotide – 15 years – “if it ain’t broke, don’t fix it”

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

18 days in November 2010 – by Ronny Allan

Inspiration, Patient Advocacy, Treatment, ,
I published this 14 years to the day I walked out of hospital holding the hand of my wife Chris. After a diagnosis of advanced Neuroendocrine Tumours on 26th July 2010, many things were lined up for me.  Some were on the critical path and had to be sequenced.  Many of them were pieces of evidence to support a treatment, which for many with advanced Neuroendocrine Tumours, offered the best hope for living longer - debulking surgery. People with very aggressive cancers at Stage IV may not be offered surgery, but one of the features of low grade metastatic NETs…
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24 Nov 2024
By Ronny Allan
29 Comments
In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

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

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , ,
Originally published March 2017 OPINION.  Date of Article March 2017.  In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…
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12 Nov 2024
By Ronny Allan
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Living with Neuroendocrine Tumours – the 14 year itch

Living with Neuroendocrine Tumours – the 14 year itch

Diet and Nutrition, Patient Advocacy, Survivorship, The NET Effect Series, Treatment, ,
Following a diagnosis of metastatic small intestine NET in 2010, I wrote a blog in 2017 entitled "The 7 year itch".  I thought I would re-release it having reached 14 years and almost 7 years since it was published. When I wrote it, I was inferring a link between Lanreotide and my ongoing leg itching.  After some years, I also started to see correlations between itching and many other things including but not limited to the seasons of the year (i.e. it seemed to be worse in the winter).  As another example, I also noticed itchy skin could be caused…
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10 Nov 2024
By Ronny Allan
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I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Patient Advocacy, Treatment, , , , , ,
1 year after 2 x surgery - at a ball organised by my surgeon 5 years after 3 surgeries 10 years after surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak…
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08 Nov 2024
By Ronny Allan
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48 hours in November 2010 – Awareness and Hope from Ronny Allan

48 hours in November 2010 – Awareness and Hope from Ronny Allan

Awareness, Inspiration, Patient Advocacy, Survivorship, Treatment, , , ,
D Day  D for Diagnosis. I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would…
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22 Oct 2024
By Ronny Allan
6 Comments
Neuroendocrine Tumour (NET) – don’t let it be a Crisis

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

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , ,
Edit 2026.  A collection of NET specialists issue new guidance for so called carcinoid crisis (click here) - one thing they missed - changing the name. Note:  Regional NET MDTs may adopt it immediately or continue what what is already part of local guidelines.  The remainder of my blog will be updated as I see responses from the various scientific organisations. 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…
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09 Oct 2024
By Ronny Allan
11 Comments
Neuroendocrine Cancer – Liver directed therapy

Neuroendocrine Cancer – Liver directed therapy

Treatment, , , , , , , , , , , , , , , ,
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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22 Sep 2024
By Ronny Allan
9 Comments
Don’t be underactive with your Thyroid surveillance

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , ,
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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20 Sep 2024
By Ronny Allan
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CABOMETYX® (cabozantinib) for pNET and epNET

CABOMETYX® (cabozantinib) for pNET and epNET

Clinical Trials and Research, Treatment,
Update 30 Sep 2026. NICE will listen to another appeal on Cabozantinib in UK.  Notice of Appeal - Cabozantinib for treating advanced neuroendocrine tumours that have progressed after systemic treatment [ID6474] NICE has received 2 appeals, that fall within one or more of the two strictly limited grounds for appeal, against the Final Draft Guidance on the above technology from the following organisations: Ipsen Limited, Neuroendocrine Cancer UK The appeal panel will convene on Wednesday 24 June 2026 at 10:00am via Zoom to hear oral representations from the appellants.  I have yet to see any output from the 24th June 2026…
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06 Sep 2024
By Ronny Allan
11 Comments
Palliative Care – it might just save your life

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , ,
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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05 Sep 2024
By Ronny Allan
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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

Patient Advocacy, Treatment, , ,
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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05 Sep 2024
By Ronny Allan
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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

Patient Advocacy, Treatment,
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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04 Sep 2024
By Ronny Allan
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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

Patient Advocacy, Treatment,
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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04 Sep 2024
By Ronny Allan
4 Comments
Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

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

Clinical Trials and Research, Patient Advocacy, Treatment, , , , , ,
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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01 Sep 2024
By Ronny Allan
20 Comments
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

Treatment, , , , , , , , , , , , , ,
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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