30 Apr 2026
By Ronny Allan
0 Comments
An unmissable update from Ronny Allan covering April 2026

An unmissable update from Ronny Allan covering April 2026

Newsletters, Patient Advocacy
A monthly update not to miss........Summary of April 2026 on RonnyAllan.NET I think the main story of April is similar to March which was a strong blog performance.  Some of March was so popular that it has rolled into April and I have tried to beat those figures but failed due to external pressures. Nonetheless, the figures for the first third of the year are impressive in comparison to the last 5 years. Other key targets met were the two main primary types have finally been added to my Spotlight series - you will see those listed below.  You will note…
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26 Apr 2026
By Ronny Allan
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Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)

Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)

A spotlight on NENs, A spotlight on NENs - Types, Patient Advocacy, , , , , , , ,
DisclaimerThis Spotlight is for general education and reassurance only. It cannot replace personalised advice from your own medical team, who understand your individual history, imaging, pathology, and treatment needs. Neuroendocrine tumours vary widely in behaviour, presentation, and management, and guidance may evolve as new evidence emerges. If you have questions about your diagnosis, symptoms, or treatment plan, please discuss them directly with your specialist NET team. Small intestine neuroendocrine neoplasms (siNENs) - (Jejunum + ileum — excluding duodenum) Small intestine neuroendocrine neoplasms (siNENs) arise in the mid‑gut, specifically the ileum and jejunum. These two segments form the core of “small intestine…
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23 Apr 2026
By Ronny Allan
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A Spotlight on Pancreatic Neuroendocrine Neoplasms

A Spotlight on Pancreatic Neuroendocrine Neoplasms

A spotlight on NENs, A spotlight on NENs - Types, Patient Advocacy, , , , , , , , , , , , , , ,
DisclaimerThe information in this Spotlight is for general education only. It cannot replace advice from your own medical team, who know your individual situation, test results, and treatment options. Neuroendocrine Neoplasms and related conditions are complex and research is evolving; guidance, classifications, and statistics may change over time. Always discuss any questions or concerns with your specialist team before making decisions about tests, treatments, or monitoring. Pancreatic neuroendocrine neoplasms comprise Pancreatic NETs (well differentiated) and Pancreatic NEC (poorly differentiated) 1. What they are Pancreatic NENs arise anywhere in the head, neck, body, or tail of the pancreas and include: Well‑differentiated…
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17 Apr 2026
By Ronny Allan
0 Comments
Neuroendocrine Cancer in UK – a growing crisis?

Neuroendocrine Cancer in UK – a growing crisis?

Patient Advocacy, , , ,
I was delighted to read about the efforts of Dr Arthur Scott, a Member of the UK Parliament (MP).  He is a great advocate for cancer patients and recently introduced a rare cancer bill in the UK Parliament which will hopefully make a difference. The content was very interesting and I was drawn to several parts of his submission. "The label of “rare” can often be a dangerous misnomer in our healthcare system" Firstly, the description of 'rare' as a 'dangerous misnomer' when applied to a cancer which is now more prevalent than better known cancers such as Stomach and…
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12 Apr 2026
By Ronny Allan
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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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07 Apr 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours – Vitamin B3 (Niacin)

Neuroendocrine Tumours – Vitamin B3 (Niacin)

Diet and Nutrition, Patient Advocacy, , , , , ,
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely. What Vitamin B3 Is Vitamin B3 — also known as niacin, nicotinamide, or nicotinic acid — is an essential water‑soluble vitamin your…
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02 Apr 2026
By Ronny Allan
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March 2026 Newsletter from Ronny Allan

March 2026 Newsletter from Ronny Allan

Newsletters, Patient Advocacy
Here is my monthly summary of March 2026 on RonnyAllan.NET This has been a very good month but to be honest, I had more time at home and on my computer, due to illness.  OK I was not that ill that I could not tap away at a keyboard!  However, it was pretty erratic access.   I told the story of my illness in a blog post entitled "This too shall pass" which one reader (Dee from Brisbane in Australia described as "Hauntingly accurate".  It contributed to almost 30,000 blog views in March 2026, the highest for some time.You will note blogs…
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27 Mar 2026
By Ronny Allan
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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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23 Mar 2026
By Ronny Allan
0 Comments
This too shall pass

This too shall pass

Inspiration, Patient Advocacy
If you've heard that phrase before, you're not alone.  The phrase is rooted in older Persian and Buddhist teachings, and widely accepted as a testament to the impermanence of all things.  Many famous people have used this phrase including Abraham Lincoln, Tom Hanks, Robert De Niro and King Solomon.  I've also seen various cancer bloggers use it many times.  I've used it few times too, mainly for quick Facebook updates. This has been both an exciting year but also so far, a 'this too shall pass' moment in March. Exciting because I was on the holiday of a lifetime for…
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21 Mar 2026
By Ronny Allan
0 Comments
HRT and Neuroendocrine Tumours (NETs): What Patients Need to Know

HRT and Neuroendocrine Tumours (NETs): What Patients Need to Know

Patient Advocacy, , , , , , , , ,
Before you read this… This article discusses hormone replacement therapy (HRT) in the context of general health, menopause, and neuroendocrine tumours (NETs). It is provided for educational purposes only and does not recommend starting, stopping, or changing any form of HRT. The suitability of HRT depends on many individual factors, including tumour type, grade, hormone sensitivity, medical history, and personal risk–benefit considerations. These vary widely between people with NETs. Only your own specialist team can advise on whether HRT is appropriate for you. No treatment decisions should be made based on this article alone.   Hormones and cancer often get…
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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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17 Mar 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)

Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)

Diet and Nutrition, Patient Advocacy, ,
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely.If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely.   Vitamin D is a fat-soluble vitamin (along with A, E and K).  Fat-soluble vitamins are absorbed with the other fats from the food…
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11 Mar 2026
By Ronny Allan
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Cancer: Words are important but so is context

Cancer: Words are important but so is context

Inspiration, Patient Advocacy,
Words are very important to cancer patients, some people hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry.  Why can’t doctors just tell me in layman’s language?  Easy answer ……. because it is not an exact science. Doctors are not robots (…… yet!), they are human beings just like us.  Doctors have different views and they can have different interpretations of long standing terms ingrained in the annals of medicine.  Some doctors have better patient communication.  They don’t have crystal balls, but they…
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01 Mar 2026
By Ronny Allan
0 Comments
Newsletter covering January and February 2026

Newsletter covering January and February 2026

Newsletters, Patient Advocacy
Overview Many thanks for the support in January and February 2026.  This is a double month newsletter due to my 27 day holiday! 2026 Blog Activity for January and February Actually, despite my  holiday figures are pretty much normal.  I had a great month in December 2025, perhaps I was overperforming as I was anticipating a quiet January and February - but January and then February seemed to continue the motion.  It's interesting because December is normally my quietist month, followed by January!  I'm particularly pleased with the growth of my main Facebook page Neuroendocrine Cancer over this period, perhaps…
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27 Feb 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin)

Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin)

Diet and Nutrition, Patient Advocacy, , , , , , , , , , , , , , ,
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely.If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely.   Vitamin B12 is a water-soluble vitamin.  Unlike fat-soluble vitamins, they are not stored in your body long term. They enter your bloodstream,…
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18 Feb 2026
By Ronny Allan
0 Comments
Sometimes you gotta climb that bridge!

Sometimes you gotta climb that bridge!

Inspiration
When I was a young lad, I didn't seem to have a fear of heights, not that I got many chances to test it but a couple of things springs to mind.  As a 'feral youth' I once climbed to the top of a factory building without fear.  I won't divulge any further detail, just setting the scene.....   In the military, I was in the rock climbing club.  Prior to that I was moved from 'boxing' as it was considered too dangerous for me (military logic!).  Following that, I did take part in annual adventure training, participating a few times…
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10 Feb 2026
By Ronny Allan
0 Comments
50 years of marriage – in sickness and in health

50 years of marriage – in sickness and in health

Inspiration
When I was diagnosed with metastatic Neuroendocrine Cancer in 2010, there's a lot of milestones I doubted I would reach. One is today and I can now tick off another and be thankful for reaching it. I have been married to a kind and beautiful lady for 50 years on - 29th March 2025. I've written a lot about so called 'cancerversaries' but real life anniversaries are so much more meaningful. The former is really about survival but also inspires hope. The latter is also about survival in this modern age but it is also about love and thankfulness. I'm…
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06 Feb 2026
By Ronny Allan
0 Comments
Zanzalintinib Versus Everolimus in Participants With Locally Advanced or Metastatic Neuroendocrine Tumors (STELLAR-311)

Zanzalintinib Versus Everolimus in Participants With Locally Advanced or Metastatic Neuroendocrine Tumors (STELLAR-311)

Clinical Trials and Research,
A Phase 2/3, Multicenter, Randomized Open-Label Study of Zanzalintinib vs Everolimus in Participants With Previously Treated, Unresectable, Locally Advanced or Metastatic Neuroendocrine Tumors.  The primary purpose of this study is to assess the effectiveness of zanzalintinib compared to everolimus in participants with previously treated, unresectable, locally advanced or metastatic neuroendocrine tumors. Zanzalintinib (XL092) is an investigational, oral, multi-targeted tyrosine kinase inhibitor (TKI) being developed by Exelixis for various advanced cancers, blocking pathways like VEGFR, MET, and TAM kinases (AXL, MER, TYRO3) involved in tumor growth, spread, and resistance to therapy. Everolimus is already known in NET circles. This study has 25…
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13 Jan 2026
By Ronny Allan
0 Comments
Next Generation Total-Body PET/CT: Challenges and Opportunities

Next Generation Total-Body PET/CT: Challenges and Opportunities

Clinical Trials and Research, Patient Advocacy, , , ,
Long-axial field-of-view (LAFOV) systems have changed the field of molecular imaging. Since their introduction, many PET centres have installed these next-generation digital systems to provide more detailed imaging and acquire PET images in a single bed position. Indeed, vertex to thigh imaging for oncological indications can be obtained in most of the population with the currently available LAFOV systems. Moreover, Total Body (TB) PET, a subtype of LAFOV, enables imaging the entire patient—from vertex through the toes—with one bed-position for most of the population. This review aims to identify possible challenges and opportunities for PET-centres working with TB and LAFOV…
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05 Jan 2026
By Ronny Allan
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Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumors and Other Somatostatin Receptor 2-Expressing Tumors

Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumors and Other Somatostatin Receptor 2-Expressing Tumors

Clinical Trials and Research, , , , ,
Crinetics Announces First Patient Dosed in Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumours and Other Somatostatin Receptor 2-Expressing Tumours Read the news - click here Clinical Trial Document - click here Limited to US (6 locations) (so far). CRN09682, a first‑in‑class non‑peptide drug conjugate (NDC) developed by Crinetics Pharmaceuticals. The company recently announced that the first patient has been dosed in its Phase 1/2 clinical trial — a significant milestone for a therapy designed to deliver precision‑targeted cytotoxic activity without the use of radiation or standard chemotherapy. What is CRN09682? CRN09682 is engineered to target somatostatin…
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02 Jan 2026
By Ronny Allan
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Ronny Allan – a review of my blog activity December 2025

Ronny Allan – a review of my blog activity December 2025

Newsletters, Patient Advocacy, , , , ,
Here is the monthly summary of December 2025 on RonnyAllan.NET - Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. December is normally a quiet month, often the quietist month of the year.  However, this year, it was the best figures for the whole of 2025.  I think it came on the back of a very productive November as most of them are awareness orientated posts.  Some excellent technical stuff too. The month turned out 26,500 blog views.  The selection of top posts really shows the breadth of subjects applicable to…
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30 Dec 2025
By Ronny Allan
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A review of 2025 on RonnyAllan.NET

A review of 2025 on RonnyAllan.NET

Awareness, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, , ,
Summary of 2025 from Ronny  It was a good year for my advocacy work but a difficult year personally which had some impact on my advocacy work.  I had to spend quite a bit of time looking after my brother's affairs when he was diagnosed with dementia and is now living in residential care. That took a lot of  my free time away, not that I resent it, it's just one of those things you just have to do, despite the stress it entails.  I also have a glitch on my website affecting iPhones which I'm slowly working through.   …
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24 Dec 2025
By Ronny Allan
8 Comments
15 years of Christmas!

15 years of Christmas!

Awareness, Inspiration, Patient Advocacy, Travel with Ronny, ,
15 Christmas celebrations since diagnosis. A thankful statement My Facebook memories today are full of Christmas activities including my first Christmas following diagnosis of advanced Neuroendocrine Cancer.  I had been out of hospital for only 4 weeks following major surgery in 2010. I remember the whole of my own family attended, my son and daughter's families and 3 grandsons (.... since diagnosis, I now have 4 💜).  Since last Christmas, I celebrated my eldest Grandson's 21st birthday on 3rd Jan 2025, he was only 6 when I was diagnosed.  I also enjoyed celebrating Chris's 70th birthday on 11th December 2024,…
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17 Dec 2025
By Ronny Allan
0 Comments
Another Next Generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac

Another Next Generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac

Clinical Trials and Research, Patient Advocacy, ,
A Global first for NET.  Omni 128cm Total Body PET at the Peter MacCallum Cancer Centre in Melbourne Australia.  According to Professor Michael Hofman, they have been using the camera for a couple weeks and it is exceeding their expectations.  They're running a short trial comparing results against regular PETs.  The great news is that part of the trial will be a prospective sub-trial around dual FDG/ DOTATATE.  In fact I now know that the first patient  in the world to be scanned was a Pancreatic NET and you can watch a great video of this event below. What is…
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14 Dec 2025
By Ronny Allan
0 Comments
Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it

Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it

Awareness, Patient Advocacy,
My diagnosis came with many strange words including, "carcinoid" and "neuroendocrine" ......... can you spell that please, I said to the doctor. I had a low ki67 figure from a tissue sample taken percutaneously from my liver, it seemed pretty good that I was only 5 in a range of 0-100 but somehow the word 'indolent' did not seem to match the long list of metastases including the mesentery, the liver, the retroperitoneal cavity, the armpit, the clavicle. If that was not enough, there was also a long list of secondary effects including but not limited to "mesenteric fibrosis", "retroperitoneal…
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14 Dec 2025
By Ronny Allan
0 Comments
Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , ,
Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I also have one about Lanreotide (or "butt darts" in general) - click here Click here and answer all questions to join my private Facebook group Thanks for reading. Ronny Blog Facebook. Like this page please. Personal Facebook. Like this page please. Awareness Facebook Like this page please. Follow me on X (formerly twitter) Check out my online presentations Check out my WEGO Health Awards Check out my Glossary of Terms - click here Please Share this post for Neuroendocrine Cancer awareness and to…
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07 Dec 2025
By Ronny Allan
0 Comments
Neuroendocrine Tumours (NET) – hiding in plain sight – an awareness post from Ronny Allan

Neuroendocrine Tumours (NET) – hiding in plain sight – an awareness post from Ronny Allan

Awareness, Patient Advocacy, , ,
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.…
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07 Dec 2025
By Ronny Allan
0 Comments
Ronny Allan – just a wee Scottish guy with a computer

Ronny Allan – just a wee Scottish guy with a computer

Awareness, Patient Advocacy
I was assessing performance of the awareness period in November 2025 on Facebook and was astonished to find the size of my reach on that platform.  It appears I reached well over half a million people (572,700 to be exact) when adding up the performance of my 3 public Facebook pages (from left to right 16k, 3k and 8.5k followers).  Clearly much of this performance was generated by people reading and sharing my work.  But the most astonishing figures came from separating these views into followers (of my Facebook pages) and non-followers (a clear target for awareness).   From the graphic…
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05 Dec 2025
By Ronny Allan
0 Comments
Ronny Allan – a review of my blog activity November 2025

Ronny Allan – a review of my blog activity November 2025

Newsletters
Here is the monthly summary of November 2025 on RonnyAllan.NET - Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  November is not a good month for me because I tend to think back to the worrying times when I had surgery and spent most of the month in hospital recovering from that.  It's also a month where I feel real awareness of Neuroendocrine Cancer takes a backwards step as others continue with the 1980s theme instead of getting into the 21st century.  However that said, I had a very good…
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17 Nov 2025
By Ronny Allan
0 Comments
Bone metastases in Neuroendocrine Tumours (NET) – Part 1

Bone metastases in Neuroendocrine Tumours (NET) – Part 1

Patient Advocacy, , , , ,
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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16 Nov 2025
By Ronny Allan
0 Comments
MP0712 (212Pb x DLL3), Radio-DARPin – DLL3 Radioligand Therapy Trial for Neuroendocrine Neoplasms

MP0712 (212Pb x DLL3), Radio-DARPin – DLL3 Radioligand Therapy Trial for Neuroendocrine Neoplasms

Clinical Trials and Research, , , , , , , , ,
What is Radioligand Therapy? When you browse the internet, you may see the term "Radioligand Therapy (RLT)" and wondered what it is. There's a simple explanation to what it is; and why you may be seeing more of it. Firstly, you will all be aware of Peptide Receptor Radionuclide Therapy (PRRT), right? Well that is just a type of RLT where the target is somatostatin receptors (SSTR). RLTs can have different targets. You may be seeing the term Radioligand Therapy more because this technology is starting to be used on other cancers but almost always different target routes. The obvious…
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09 Nov 2025
By Ronny Allan
0 Comments
It’s been 15 years since my “big surgery”

It’s been 15 years since my “big surgery”

Awareness, Inspiration, Patient Advocacy, , ,
D Day  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 eventually kill me…
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08 Nov 2025
By Ronny Allan
0 Comments
The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century

The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century

Awareness, Patient Advocacy, , ,
  USA - Prevalence of Neuroendocrine Neoplasms (NENs) breaches the Orphan Disease threshold for the first time (officially) The latest US SEER figures confirm that staggering increase in the prevalence of NENs. In that cross-sectional study which evaluated 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is…
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07 Nov 2025
By Ronny Allan
0 Comments
Reframing Neuroendocrine Neoplasms Beyond “Rare”

Reframing Neuroendocrine Neoplasms Beyond “Rare”

Awareness, 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.  Some of  you might add that more specialist…
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06 Nov 2025
By Ronny Allan
0 Comments
Every stripe is lost awareness

Every stripe is lost awareness

Awareness, Patient Advocacy, , ,
Sincer 2015, my message has not changed.  My message continues to be justified because since then, many important voices in the NEN community have repeated it!  However, there has been, and still remains, some instransigence, although some of that has now buckled in the face of the recent US SEER statistics. However, the buckling needs to spread and expand.  Unfortuantely, some elements of the NEN communmity remain entrenched in old thinking, in flawed thinking. I can only describe them as negative disruptors, clinging on to this old thinking. It seems like they refuse to change their mind or plan to…
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01 Nov 2025
By Ronny Allan
0 Comments
Ronny Allan – a review of my blog activity September and October 2025

Ronny Allan – a review of my blog activity September and October 2025

Newsletters
Here is the monthly summary of September and October 2025 on RonnyAllan.NET - Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  I was too maxed out at the beginning of September, so skipped it to pick up along with October.  The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the 10 posts to read. You can share the whole post or you can share those individual posts - each has a share…
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31 Oct 2025
By Ronny Allan
15 Comments
Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide

Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , , , , , , , , ,
Scroll down to check out the doctors list just below Important note The accuracy of these lists depends on the accuracy of the sources. If you think the source is wrong, let them know, not me. However, you can also join my private Facebook group and someone in there will often be more up to date than the source!  To the best of my knowledge, this the only attempt at a worldwide list of specialists.  Finding experts Many people ask for a definition of a "NET Specialist". There's also discussions surrounding Multidisciplinary Teams (MDT)/Tumor Boards and Centres of Excellence (CoE).…
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31 Oct 2025
By Ronny Allan
0 Comments
Reports of my death have been greatly exaggerated….. the pitfalls of Artificial Intelligence (AI)

Reports of my death have been greatly exaggerated….. the pitfalls of Artificial Intelligence (AI)

Humour
Reports of my death have been greatly exaggerated….. the pitfalls of Artificial Intelligence (AI) I recently discovered — to my great amusement - that someone referred to me as “the late Ronny Allan.” While I appreciate the dramatic flair, I’d like to reassure everyone that I’m still very much alive, caffeinated, and actively moderating, educating, and occasionally ranting about neuroendocrine cancer.  To be fair, I do spend a lot of time digging through esoteric subjects such as pathology reports and clinical trial data, so perhaps someone mistook my silence for eternal rest. Or maybe they just assumed that anyone who’s…
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30 Oct 2025
By Ronny Allan
0 Comments
I made it to 70!

I made it to 70!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. 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, grading, and 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…
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29 Oct 2025
By Ronny Allan
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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 incidence of aNET…
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27 Oct 2025
By Ronny Allan
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Weekly roundup from Ronny 20th – 26th October 2025

Weekly roundup from Ronny 20th – 26th October 2025

Newsletters
Weekly roundup from RonnyAllan.NET covering period 20th - 26th October 2025 A busy week!  I continue to be diverted on personal stuff but still managed to publish many things.  My biggest task which has been outstanding for a while, was published and commenting on the latest statistics on Neuroendocrine Neoplasms out of USA, the first SEER output since 2017.  Heading - Neuroendocrine Neoplasms as a group are not rare - but then I have been saying that for 10 years.  If you missed the conversation on Facebook - click here.   New or updated blogs in the last 7 days: CABOMETYX®…
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19 Oct 2025
By Ronny Allan
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Weekly roundup from Ronny 13th – 19th October 2025

Weekly roundup from Ronny 13th – 19th October 2025

Newsletters
  Weekly roundup from RonnyAllan.NET covering period 13th - 19th October 2025 A busy week!  I continue to be diverted on personal stuff but still managed to publish many things.  My biggest task which has been outstanding for a while, was published and commenting on the latest statistics on Neuroendocrine Neoplasms out of USA, the first SEER output since 2017.  Heading - Neuroendocrine Neoplasms as a group are not rare - but then I have been saying that for 10 years.  If you missed the conversation on Facebook - click here.  But a link to the article is also below. …
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18 Oct 2025
By Ronny Allan
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Neuroendocrine Cancer: a needle in a haystack?

Neuroendocrine Cancer: a needle in a haystack?

Patient Advocacy, , , , , , , , , , , ,
Reviewed and edited 6th April 2026 It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the US SEER database report issued in 2025 and also in many other places), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood. Neuroendocrine Cancer is a heterogenous…
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13 Oct 2025
By Ronny Allan
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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
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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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22 Sep 2025
By Ronny Allan
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Weekly update 22nd September 2025

Weekly update 22nd September 2025

Newsletters, ,
Another helpful week with some good support on my social media outlets.  This is despite a reduction in new posts while I resolve some website issues.  I thank you if you  have supported my website via my social media accounts, particularly Facebook. So what are the highlights of last week?  Let's start with my Pheochromocytoma/Paraganglioma campaign. Click here or the picture below to read the post.  Why not join in on the Facebook post - click here. Steve Jobs is always a draw, he's so well known.  He may not have taken part in much Neuroendocrine Cancer awareness when he…
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18 Sep 2025
By Ronny Allan
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The Treachery of Pheochromoctyomas and Paragangliomas – please think of it!

The Treachery of Pheochromoctyomas and Paragangliomas – please think of it!

Patient Advocacy, , ,
Something came up in my timeline this week and I really enjoyed reading it.  I have many alerts set for various subjects including Pheochromocytomas and Paragangliomas.  Often an old published article is republished making it to my alert system and it got pushed up the timeline. It did seem like it was up to date but I eventually spotted it was from 2006! I appreciated some of the content because it had confirmed many parts of my knowledge about these interesting tumours. Two things stood out in this 2006 document:  Firstly, the mention of how many of these tumours are…
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03 Sep 2025
By Ronny Allan
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The 4 Cs – Causation, Correlation, Coincidence and Confounding Factors

The 4 Cs – Causation, Correlation, Coincidence and Confounding Factors

Patient Advocacy,
I learn a lot in my private patient group.  I also notice people jumping to conclusions on the cause of their issue when two variable things change at the same time.  It is pretty normal (and even I do it) to want to know what is causing a symptom but working out the causes is not always easy.  Treating the symptoms may be a more efficient use of time and energy.  Healthcare professionals are better placed to work this stuff out but in 2025, the internet, google, and even artificial intelligence can help the resourceful patient/caregiver.  But all of these…
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