08 Jun 2026
By Ronny Allan
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Ronny Allan’s Newsletter covering May 2026

Ronny Allan’s Newsletter covering May 2026

Newsletters, Patient Advocacy, , , ,
Just back from holiday thus why the late publication!  Summary of May 2026 on RonnyAllan.NET I think the main story of May is similar to March and April which was a strong blog performance.  Other key targets met were the two main primary NET types (small intestine and pancreas) and one not so common(thymus) have finally been added to my Spotlight series and a batch of updates to my vitamin series. You will note blogs are coming through in a different format?  This was partly due to people with iPhones complaining about 'jumpy screens'. That was resolved the issue but I am…
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22 May 2026
By Ronny Allan
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Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk

Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk

A spotlight on NENs, Diet and Nutrition, Patient Advocacy, , , , , , , ,
This blog provides general educational information only. It does not offer medical advice, diagnosis, or treatment. Patients should always consult their clinical team for personalised guidance.   Introduction: What Are Fat‑Soluble Vitamins? Fat‑soluble vitamins — A, D, E and K — are nutrients that can only be absorbed when dietary fat is digested properly. They rely on bile acids, pancreatic enzymes, and a healthy small intestine (especially the jejunum and ileum) to form tiny droplets called micelles, which carry these vitamins across the gut wall. Unlike water‑soluble vitamins, they are stored in the liver and fatty tissues, so deficiencies develop…
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17 May 2026
By Ronny Allan
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Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate)

Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate)

A spotlight on NENs, Diet and Nutrition, , , ,
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.   🟧 SPOTLIGHT: FOLATE (Vitamin B9) - A general‑population overview with NET‑specific considerations where relevant. Disclaimer: This Spotlight provides general educational information…
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16 May 2026
By Ronny Allan
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Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols)

Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols)

A spotlight on NENs, Diet and Nutrition, Patient Advocacy, , , ,
🟧A general‑population overview with NET‑specific considerations where relevant. Disclaimer: This Spotlight provides general educational information about Vitamin E. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion or absorption. Always consult your medical team before making changes to supplements or nutrition. What is Vitamin E? Vitamin E is a group of fat‑soluble antioxidants that protect cell membranes from oxidative damage. The most biologically active form in humans is alpha‑tocopherol. Vitamin E is stored in fatty tissues and depends on normal fat absorption. What does Vitamin E do? Acts as a major…
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15 May 2026
By Ronny Allan
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Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol)

Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol)

Diet and Nutrition, Patient Advocacy, , ,
Disclaimer: This Spotlight provides general educational information about Vitamin A. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion, absorption, or liver function. Always consult your medical team before making changes to supplements or nutrition. 🟧A general‑population overview with NET‑specific considerations where relevant. What is Vitamin A? Vitamin A refers to a group of fat‑soluble retinoids (retinol, retinal, retinoic acid). These are the active forms used by the body. Plant pigments such as beta‑carotene are pro‑vitamin A carotenoids that must be converted into retinol before use. What does Vitamin A do?…
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12 May 2026
By Ronny Allan
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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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11 May 2026
By Ronny Allan
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Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones)

Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones)

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.   1. What Is Vitamin K? Vitamin K is a fat‑soluble vitamin essential for: Normal blood clotting Bone health Vascular health Two main forms:…
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10 May 2026
By Ronny Allan
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A spotlight on Colon Neuroendocrine Neoplasms

A spotlight on Colon Neuroendocrine Neoplasms

A spotlight on NENs, A spotlight on NENs - Types, , , , , , ,
Disclaimer: This Spotlight is for general information only and should not be used as a substitute for personalised medical advice. Neuroendocrine neoplasms (NENs) are diverse, and individual cases vary. Always discuss your specific situation, test results, and treatment options with your own specialist team. Content reflects current evidence and classifications at the time of writing and may evolve as new data emerge.   Where the Colon Begins and Ends The colon begins at the cecum The cecum is the first part of the colon, immediately after the terminal ileum. This marks the upper boundary for defining a colon NET. The…
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04 May 2026
By Ronny Allan
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Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs)

Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs)

A spotlight on NENs, A spotlight on NENs - Types, Patient Advocacy, Spotlight on NENs - Types Series, , , , , , , , ,
Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment.  Thymic Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here.  Always discuss your own situation, test results, and treatment options with your specialist team, including your thoracic, oncology, endocrine, or NET multidisciplinary team (MDT). If you have concerns about symptoms, progression, or treatment decisions, please seek guidance from your clinical team without delay.   Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs) A rare but important member of the NEN…
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30 Apr 2026
By Ronny Allan
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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
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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
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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
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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
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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
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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
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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
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Neuroendocrine Tumours – A Spotlight on Vitamin D (Cholecalciferol / Ergocalciferol)

Neuroendocrine Tumours – A Spotlight on 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
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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
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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
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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
0 Comments
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 21 locations so far (17 USA and 4 Spain) - 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…
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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
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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 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   Check out my WEGO Health Awards Check out my Glossary of Terms - click here   Please Share this post for Neuroendocrine Cancer awareness and to help another patient  
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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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