Ronny Allan - Living with Neuroendocrine Cancer - Page 2 of 16 - Ronny Allan - International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping patients and their advocates

11 Aug 2025

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I may look well, but you can’t see my battles!

Patient AdvocacyCancer surveillance, Invisible illness, Survivorship

As I ponder my annual surveillance this summer and wonder what will be discussed, I also think about how far I’ve travelled and what I have been able to do. It’s more than I thought I’d be able to do, I didn’t expect to still be here. Often, I feel lucky. Perhaps an odd thing to say when I’m living with Stage IV cancer. But those cards were dealt in 2010, and I now play with a new deck where I do have some control over how those cards are played. As long as it’s not a flush! No pity please.…

09 Aug 2025

By Ronny Allan

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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, TreatmentNETTER-3, Peptide receptor radionuclide therapy (PRRT), PRRT

Why is this trial important? The output of NETTER-2, suggested Lutathera for GEP-Grade 2 and 3 NETs could be used as a first line treatment. In some areas this appeared to be controversial. The data from NETTER-1, which was focused on Grade 1 and 2 (less than ki67 of 10%), did not conclude the same, different aim. However, this appears to be the main aim of NETTER-3, to look at the data in the same way as NETTER-2 but for Grade 1 and 2 with similar criteria used on NETTER-1. You might say NETTER-3 is a follow on from NETTER-1 but…

08 Aug 2025

By Ronny Allan

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Ronny Allan – a review of my blog activity July 2025

Awareness, Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is the monthly summary of July 2025 on RonnyAllan.NET Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. 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 button or you can copy and paste the internet link (url). Use your own words, invite them to subscribe to my website and…

07 Aug 2025

By Ronny Allan

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Sometimes you gotta climb that hill because it’s a better view!

Living with Neuroendocrine Cancer, Sometimes you gotta climb that hill!, Survivorship, Travel with RonnyMalvern Hills, Survivorship

For those who are not familiar with my "sometimes you gotta climb that hill" series, let me explain one important thing before you read. These posts are metaphorical posts. The "hill" represents a challenge, often one that people with cancer have to face. It is not a blog about physically walking up a hill - although I do use my outdoor challenges to get the point over (plus many of my followers prefer my exploits to my technical articles!). I always get a lot of personal satisfaction and self administered mental health treatment by taking part, and that is also…

28 Jul 2025

By Ronny Allan

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Weekly Roundup on RonnyAllan.NET – 28th July 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

New or Repurposed/Republished blogs this weekClick pictures to read Click the picture to read the post Page - Neuroendocrine Cancer - featured post Go straight to the facebook post - click here or go straight to the relevant blog post - click here Page - Ronny Allan - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here Page - World Neuroendocrine Cancer Day - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here Now click on…

26 Jul 2025

By Ronny Allan

7 Comments

15 years since diagnosis, I’m still here

Inspiration, SurvivorshipAdvanced neuroendocrine cancer

I finally made 15 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris, my wife of 50 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…

24 Jul 2025

By Ronny Allan

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My NET is different than yours

A spotlight on NENs, Awareness, Living with Neuroendocrine CancerCarcinoid syndrome, Carcinoid tumour, Heterogeneity, Heterogeneous, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

When you manage a large support group, you see a lot of posts. Many of them highlight a lack of knowledge about the heterogeneity of Neuroendocrine Neoplasms. The issue is not always with those answering the question but often it is the person asking the question. Sometimes intervention is needed to focus responses. So, what are the key issues? Read on..... If you read any authoritative source on this cancer, it will normally begin with “Neuroendocrine Neoplasms (NENs) are heterogeneous tumours ………….” “Heterogeneous” means consisting of dissimilar parts or elements, essentially meaning “mixed” or “diverse,” but I used the term…

21 Jul 2025

By Ronny Allan

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Ronny’s Weekly Roundup 14th – 20th July 2025

Patient Advocacy

New or Repurposed/Republished blogs this weekClick pictures to read https://medicalstories.tv/ Page - Neuroendocrine Cancer - featured post Go straight to the facebook post - click here or go straight to the relevant blog post - click here Page - Ronny Allan - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here Page - World Neuroendocrine Cancer Day - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here https://ronnyallan.net

16 Jul 2025

By Ronny Allan

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Ronny Allan’s Glossary of Terms (Basic Edition)

A spotlight on NENs, A spotlight on NENs - Syndromes, A Spotlight on NENs - Testing Series, A spotlight on NENs - Types, 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, TreatmentNeuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

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…

15 Jul 2025

By Ronny Allan

5 Comments

Medical Stories – Neuroendocrine Tumors (NETs): Anthony’s Story

InspirationpNET, Type 3c diabetes, Whipple procedure

Great patient story from Anthony and Amy featuring well-known US NET specialist Dr Pamela Kunz. Some of you will have heard me or read one of my posts, emphasising the importance of patient stories. This story encompasses all the strongest areas for awareness but also explains a classic NET journey for others to hear about. It's wonderful to hear the voice of caregiver Amy as these things tend to impact on close family too. I hear that strength come through in her voice and I'm sure Anthony appreciates that. Anthony is a strong too, this guy plays soccer, tennis, he runs…

14 Jul 2025

By Ronny Allan

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RonnyAllan.NET – weekly round-up 7th – 13th July 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

New or Repurposed/Republished blogs this weekClick pictures to read Page - Neuroendocrine Cancer - featured post Go straight to the facebook post - click here or go straight to the relevant blog post - click here Page - Neuroendocrine Cancer - featured post Click here to read about NET and diet Page - Ronny Allan - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here Page - World Neuroendocrine Cancer Day - featured postGo straight to the facebook post - click here or go straight to the relevant…

13 Jul 2025

By Ronny Allan

4 Comments

Hot Saturday cycle ride

Patient Advocacy, Survivorship, Travel with RonnyQuality of LIfe (QoL)

You're right, this is a strange title for Ronny to use on his blog........ However, I'm testing a different way to blog from my website to test something which has been annoying me (and others). Anyway, that's the explantion, now enjoy the pictures and story!The weather in UK is currently very hot (..... for UK!) so we decided on a slow cycle down to the nearest beach. It was a great and relaxing ride. We had already taken sandwiches for lunch and we just needed a cup of tea (cappachino for Chri) at a place called The Noisy Lobster -…

10 Jul 2025

By Ronny Allan

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2025: A Review of the 1st half of the year on RonnyAllan.NET – Living with Neuroendocrine Cancer

NewslettersAdvanced neuroendocrine cancer

ReviewMy 2025 year to date has been really tough due to other commitments. However, the total viewing figures at 30th June are not bad considering where I started. To be honest, I’m still flabbergasted by reaching one million views in 2018, and then reach 2 million in December 2020. I'm over two-thirds of the way to 3 million at 1 Jul 2025. It just happened, there wasn't a plan! I'm grateful for every single view though.2025 has been a challenging year, mainly because I've had a lot of holidays plus I have a major family commitment which is not looking to…

01 Jul 2025

By Ronny Allan

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Ronny Allan – a review of my blog activity Jun 2025

Awareness, Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Bile acid malabsorption, DLL3

Here is the monthly summary of June 2025 on RonnyAllan.NET Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. 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 button or you can copy and paste the internet link (url). Use your own words, invite them to subscribe to my website and follow…

30 Jun 2025

By Ronny Allan

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RonnyAllan.NET – weekly round-up 23rd-30th June 2025

NewslettersAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2025/06/29/a-trial-to-assess-efficacy-and-safety-of-octreotide-subcutaneous-depot-cam2029-in-patients-with-gep-net-sorento/ https://ronnyallan.net/2025/06/27/dll3-expression-in-neuroendocrine-neoplasms-an-overview/ https://ronnyallan.net/2025/06/26/an-enets-position-statement-on-nutritional-support-in-neuroendocrine-neoplasms/ https://ronnyallan.net/2025/06/23/ronnyallan-net-weekly-round-up-23rd-june-2025/ https://ronnyallan.net/2025/04/26/currently-trending-on-ronnyallan-net/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group click picture to…

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)

Clinical Trials and Research, TreatmentClinical trial, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Lanreotide, Octreotide, Sandostatin, Somatostatin analogues, Somatostatin receptors (SSTR)

Oczyesa for treatment of acromegaly is approved for use in the EU and UKLund, Sweden — 28 August 2025 — Camurus (NASDAQ STO: CAMX) today announced that the UK Medicines and Healthcare products Regulatory Agency (MHRA) has approved Oczyesa®, octreotide subcutaneous depot, marketing authorization for the maintenance treatment in adult patients with acromegaly who have responded to and tolerated treatment with somatostatin analogs.1”Oczyesa, the first once-monthly subcutaneous octreotide treatment, has shown effective and sustained control of acromegaly and can be self-administered by patients using an autoinjector pen”, says Fredrik Tiberg, President & CEO, CSO at Camurus. ”Camurus plans to launch the treatment…

27 Jun 2025

By Ronny Allan

0 Comments

DLL3 Expression in Neuroendocrine Neoplasms – an overview

Clinical Trials and Research, TreatmentDLL3, High grade neuroendocrine neoplasm (NEN), Large cell neuroendocrine carcinoma (LCNEC), Lung NETs, Neuroendocrine carcinoma (NEC), Poorly differentiated, Small cell lung cancer (SCLC)

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…

26 Jun 2025

By Ronny Allan

0 Comments

An ENETS Position Statement on nutritional support in Neuroendocrine Neoplasms

Diet and NutritionBile acid malabsorption, Diet, Digestive enzymes, Fat malabsorption, Fat soluble vitamins, Nutrition, Pancreatic enzyme replacement therapy (PERT), Vitamin A, Vitamin ADEK, Vitamin B12, Vitamin D

I've written many times about Nutrition and NETs - clearly it should say NENs (Neuroendocrine Neoplasms) as the issues also extend to Neuroendocrine Carcinomas. I was helped in the early days by my friend and 'nutrition for NET' mentor Tara Whyand, at the time, probably the top NET Nutrition Registered Dietitian in the world. Perhaps she still is. Much of what Tara said and wrote, and what I emphasised, particularly in my blog and my patient group, was that much of this was not fully integrated into NEN patient care as part of a multi disciplinary approach. Many attempts have…

23 Jun 2025

By Ronny Allan

2 Comments

RonnyAllan.NET – weekly round-up 23rd June 2025

Newsletters

New or Republished Blog Posts this week https://ronnyallan.net/2024/09/20/cabozantinib-for-advanced-neuroendocrine-tumours-another-tool-in-the-treatment-toolbox/ https://ronnyallan.net/2025/06/19/good-morning-from-ronny-allan/ https://ronnyallan.net/?na=view&id=53 https://ronnyallan.net/2025/06/11/dont-delay-your-blood-tests-its-not-good-for-your-health/ https://ronnyallan.net/2025/06/10/ronnyallan-net-weekly-round-up-9th-june-2025/ https://ronnyallan.net/2025/04/26/currently-trending-on-ronnyallan-net/ Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group RIP Dr Richard Warner…

19 Jun 2025

By Ronny Allan

0 Comments

Good morning from Ronny Allan

Patient Advocacy

Ronny Allan here. Apologies for intruding on your day but I'm reorganising how my blogs and newsletters are sent from my website. This is just a bit of a test! But if you have some time, you could try a browse of my site RonnyAllan.NET to see what you may have missed!

11 Jun 2025

By Ronny Allan

0 Comments

Don’t delay your blood tests – it’s not good for your health!

Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Diarrhea, Flushing, Small intestine NET (SI NET)

15 years today, and before I was formerly diagnosed, I had a blood test done. And it was a fairly insignificant event, as a precaution, as a "just in case" check after telling a nurse in my GP surgery that I thought I'd lost some weight. The form she gave me sat in my in-tray for a couple of weeks, I was far too busy at work for blood tests. I didn't even feel ill! Fortunately, I did eventually get the test done on 11th June 2010 and and here we are today! Check out the video where I talk…

10 Jun 2025

By Ronny Allan

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RonnyAllan.NET – weekly round-up 9th June 2025

Newsletters

New or Republished Blog Posts this week https://ronnyallan.net/2025/06/06/a-diagnostic-imaging-study-of-64cu-sartate-for-neuroendocrine-tumours/ https://ronnyallan.net/2025/06/02/ronny-allan-a-review-of-my-blog-activity-may-2025/ https://ronnyallan.net/2025/05/30/ronny-allans-top-10-so-far-in-2025/ https://ronnyallan.net/2025/03/13/histotripsy-the-case-for-use-in-uk/ https://ronnyallan.net/2025/04/26/currently-trending-on-ronnyallan-net/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group a special post…

06 Jun 2025

By Ronny Allan

0 Comments

A Diagnostic Imaging Study of 64Cu-SARTATE™ for Neuroendocrine Tumours

Clinical Trials and Research64Cu-DOTATATE, 64Cu-SARTATE, 67Cu-SARTATE, Ga68 PET/CT, Neuroblastoma, Peptide receptor radionuclide therapy (PRRT), SARTATE™, Somatostatin receptors (SSTR), SSTR-PET

UPDATE 23rd December 2025. (Originally published Apr 2021). Phase 3 trial to commence soon (clinical trials reference detail to follow) Sydney, Australia 22 December 2025 Clarity Pharmaceuticals (ASX: CU6) (“Clarity” or “Company”), a clinical-stage radiopharmaceutical company with a mission to develop next-generation products that improve treatment outcomes for patients with cancer, is pleased to announce it will be commencing a pivotal Phase III registrational trial of its 64Cu-SARTATE diagnostic agent in patients with neuroendocrine tumours (NETs). This follows a successful End of Phase meeting with the United States (US) Food and Drug Administration (FDA), in which all key components of the proposed…

02 Jun 2025

By Ronny Allan

0 Comments

Ronny Allan – a review of my blog activity May 2025

Awareness, NewslettersAdvanced neuroendocrine cancer

Here is the monthly summary of May 2025 on RonnyAllan.NET The list of posts this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. 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. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by…

30 May 2025

By Ronny Allan

0 Comments

Ronny Allan’s Top 10 so far in 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Just click on the pictues and read (and hopefully share!) I'm constantly fighting algorithms! Facebook is the worst, apparently only 10% of followers will get a notification of a new post on my pages. 10% !!! Because I am a blogger for a health condition, they put me amongst businesses. Clearly they want advertising revenue from business, I get that, Facebook has huge overheads. But I am here helping people and not reaching my community (unless I pay of course). However, if you are following my Facebook pages, add them to your favourites and you will help beat the algorithms.…

19 May 2025

By Ronny Allan

2 Comments

Ronny Allan’s weekly roundup 12th – 18th May 2025

NewslettersAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2016/04/21/neuroendocrine-cancer-unexpected-detours/ https://ronnyallan.net/2025/05/12/neuroendocrine-tumours-now-you-see-them-now-you-dont/ https://ronnyallan.net/2025/05/12/ronny-allans-weekly-roundup-5th-11th-may-2025/ Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group No side effects of Lanreotide whatsoever :-)…

12 May 2025

By Ronny Allan

0 Comments

Ronny Allan’s weekly roundup 5th – 11th May 2025

NewslettersAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2025/05/12/neuroendocrine-tumours-now-you-see-them-now-you-dont/ https://ronnyallan.net/2025/05/04/ronny-allans-weekly-round-up-for-29th-apr-4th-may-2025/ https://ronnyallan.net/2025/05/01/ronny-allan-a-review-of-my-blog-activity-april-2025/ https://ronnyallan.net/2025/04/28/the-6-es/ https://ronnyallan.net/2025/04/26/currently-trending-on-ronnyallan-net/ Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group a special post box in…

12 May 2025

By Ronny Allan

0 Comments

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

TreatmentCT scan, Diffuse hepatic steatosis, Fatty liver, Focal fatty sparing, Ga68 PET/CT, Hypervascularity, Indium 111-pentetreotide, Invisible illness, Magnetic resonance imaging (MRI) scan, Octreotide scan, Somatostatin receptors (SSTR), SSTR-PET, Triglycerides

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 efficientEven 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 often…

04 May 2025

By Ronny Allan

0 Comments

Ronny Allan’s weekly round-up for 29th Apr – 4th May 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2025/05/01/ronny-allan-a-review-of-my-blog-activity-april-2025/ https://ronnyallan.net/2025/04/28/the-6-es/ https://ronnyallan.net/2025/04/26/repeat-after-me-make-time-for-your-wellness/ https://ronnyallan.net/2025/04/26/currently-trending-on-ronnyallan-net/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group Exciting mail! Page World…

01 May 2025

By Ronny Allan

0 Comments

Ronny Allan – a review of my blog activity April 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is the monthly summary of April 2025 on RonnyAllan.NETEvery share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. 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. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by many personal things in April 2025, (including a 2 week overseas holiday)…

28 Apr 2025

By Ronny Allan

1 Comment

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Anxiety, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Diet, Flushing, Hormones, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Somatostatin analogues

An opinion post When I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after…

26 Apr 2025

By Ronny Allan

1 Comment

Repeat after me: Make time for your wellness

Inspiration, Patient Advocacy, SurvivorshipAnxiety, Cancer survivor

Following a diagnosis of metastatic Neuroendocrine Cancer in 2010, I had no idea about outcomes. Back, then I was focused on getting my illness fixed or patched up. That took a few years and several procedures including 3 surgeries, plus a ton of drugs including a monthly injection. Apart from recuperation periods following those procedures, I pretty much worked as normal as possible throughout that 3 years, I thought that was part of my healing, mental and physical. I didn't really holiday a lot, perhaps in hindsight, that was a foolish omission. Finally, when I broke out of my illness…

26 Apr 2025

By Ronny Allan

6 Comments

Catch up on Ronny Allan’s Blog

A spotlight on NENs, A spotlight on NENs - Syndromes, A Spotlight on NENs - Testing Series, A spotlight on NENs - Types, 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, TreatmentNeuroendocrine cancer

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 https://www.instagram.com/neuroendocrine.cancer.ronny/ 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…

05 Apr 2025

By Ronny Allan

3 Comments

The trouble with the NET (Part 5) – Cancer Diet Myths

Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series"Alternative medicine, Blood glucose, Cancer causes, Diet, Essiac therapy (Essiac tea), Gerson therapy, Glucose (cancer sugar myth), Green tea, Ketogenic diet, Laetrile (amygdalin or vitamin B17), Mushrooms, Neuroendocrine cancer

Updated 29th June 2025...... Keep reading. Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions. Even food and nutritional supplements fall into this area. Be cautious about believing information about, or paying for, any alternative cancer therapy on the internet. Common dietary myths (this is not a complete list!) There are numerous (alleged)…

04 Apr 2025

By Ronny Allan

0 Comments

These 5 posts about Neuroendocrine Cancer are worth a read, see why inside

NewslettersAdvanced neuroendocrine cancer, Heterogeneity, Heterogeneous, Neuroendocrine neoplasm (NEN)

Sometimes I experiment with the layout, length and choice of words and graphics (particularly the latter) to see if a certain approach increases traffic and hits. As a blogger, traffic and hits are important for motivation but for me, the message is always more important. I once wrote a blog in 30 minutes and it is currently still the most read blog and has been for years. I adopted a Halloween theme for an awareness post called "Neuroendocrine Cancer – normally slow but always sneaky" I was amazed by the response, despite the quick and dirty output. I've written many…

31 Mar 2025

By Ronny Allan

0 Comments

A review of March 2025 on RonnyAllan.NET

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is the monthly summary of March 2025 on RonnyAllan.NET The list of posts this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. 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. I'm thankful for every view because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by…

29 Mar 2025

By Ronny Allan

5 Comments

50 years of marriage – in sickness and in health

InspirationSurvivorship

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 today - 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…

24 Mar 2025

By Ronny Allan

0 Comments

Ronny Allan’s weekly round-up for 17 – 23rd March 2025

NewslettersAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2025/03/23/living-with-cancer-dont-cross-the-bridge-until-you-arrive-at-it/ https://ronnyallan.net/2025/03/22/neuroendocrine-cancer-functional-vs-non-functional/ https://ronnyallan.net/2025/03/18/ronnys-weekly-round-up-for-10-16th-march-2025/ Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. This one resonated - click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group This one got…

23 Mar 2025

By Ronny Allan

8 Comments

Living with Cancer: Don’t cross the bridge until you get to it

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Scanxiety

It's normal to be worried when you read something online including a scan report which has words that frighten you, when you notice a slightly high blood test. Or if read something bad about one type of NET or what has happened to someone with a different type of NET as you; and you think this might also apply to you. But too much worrying about something which is more likely to not be a problem or will almost certainly not happen to you; is not a good place to be. Don't cross the bridge until you come to it,…

22 Mar 2025

By Ronny Allan

0 Comments

Neuroendocrine Cancer: Functional vs Non-functional

A spotlight on NENs - Syndromes, Patient Advocacy, Spotlight on NENs - Types SeriesCarcinoid syndrome, Cushing's syndrome, Ectopic Cushing’s syndrome (ECS), Functional tumour, Gastrinoma, Glucagonoma, Insulinoma, NET syndromes, Non-functional tumour, Somatostatinoma, VIPoma

The terms functional and non-functional come up a lot in documents describing Neuroendocrine Cancer. They also feature highly in patient groups. But what do these terms actually mean? Functional / Non-FunctionalNeuroendocrine Tumours are treatable for most but the difficult part can be arriving at a diagnosis. Moreover, some Neuroendocrine Tumours (NETs) can be silently growing and as they grow slowly, the 'silence' can go on for some years. Even with a syndrome, the root cause can remain disguised as the symptoms are similar to many day-to-day illnesses. There can be the odd exception but in general terms, NETs are either functional (with…

18 Mar 2025

By Ronny Allan

0 Comments

Ronny’s weekly round-up for 10 – 16th March 2025

NewslettersAdvanced neuroendocrine cancer

New or Republished Blog Posts this week https://ronnyallan.net/2025/03/15/neuroendocrine-cancer-and-pancreatic-enzyme-replacement-therapy-pert-the-digested-version-nutrition-series-article-5/ https://ronnyallan.net/2025/03/14/letter-from-america/ https://ronnyallan.net/2025/03/13/histotripsy-the-case-for-use-in-uk/ https://ronnyallan.net/2025/03/11/early-diagnosis-of-late-stage-cancer/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group a special post box…

17 Mar 2025

By Ronny Allan

0 Comments

Neuroendocrine Cancer: 10 posts not to miss

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

I'm constantly fighting algorithms! Facebook is the worst, apparently only 10% of followers will get a notification of a new post on my pages. 10% !!! Because I am a blogger for a health condition and have a public profile, they put me amongst businesses. Clearly they want advertising revenue from business, I get that, Facebook has huge overheads. But I'm here helping people and not reaching my community (unless I pay of course). However, if you are following my Facebook pages, add them to your favourites and you will help beat the algorithms. Liking every post and sharing, also…

15 Mar 2025

By Ronny Allan

29 Comments

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, TreatmentAcid reflux, Advanced neuroendocrine cancer, Amylase, Antiacids, Barrett's Esophagus, Bile acid malabsorption, Bile acid sequestrant, Carcinoid syndrome, Carcinoid tumour, Cholestyramine, Exocrine function (pancreas), Exocrine pancreatic insufficiency, Fecal elastase test, Fecal fat, H2 receptor antagonist (H2RA), Hormones, Lanreotide, Lipase, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Nutrizym, Octreotide, Pancrease, Pancreatic cancer, Pancreatic insufficiency, Pancreatic NET (PanNET), Pancreatin, Pancrex, Pepcid (Famotidine), Protease, Proton pump inhibitors (PPI), Quality of LIfe (QoL), Small intestine bacterial overgrowth (SIBO), Somatostatin analogues, Steatorrhea, Surgery, Total gastrectomy, Total pancreatectomy, Zantac, Zollinger-Ellison Syndrome

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…

14 Mar 2025

By Ronny Allan

6 Comments

Letter from America

Awareness, Inspiration, Living with Neuroendocrine CancerNeuroendocrine cancer

I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail. Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA. Now ….. for those around the same age as me, you might have been attracted by the article header…

13 Mar 2025

By Ronny Allan

4 Comments

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

Clinical Trials and Research, Patient Advocacy, TreatmentAblation, Advanced neuroendocrine cancer, Histotripsy, Liver directed therapy

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…

11 Mar 2025

By Ronny Allan

4 Comments

Early diagnosis of late stage cancer

Patient AdvocacyAdvanced neuroendocrine cancer, Cancer grading, Cancer staging, Diarrhea, Flushing, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

Early diagnosis of late stage cancer What a strange title for a cancer blog post! However, what a strange cancer I have. Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor. To cut a long story short, you can read about me here. "The cancer has been growing for years" One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in…

08 Mar 2025

By Ronny Allan

0 Comments

Small intestine, large surgery

Patient Advocacy, TreatmentDebulking surgery, Desmoplasia, Duodenum, Incurable cancer, SB NET, SI NET, Small intestine NET (SI NET)

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…

07 Mar 2025

By Ronny Allan

5 Comments

Neuroendocrine Cancer in England: One every 90 minutes

AwarenessIncidence, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), SEER

I've made no secret of the fact that I don't believe Neuroendocrine Cancer is rare and you can read why in some detail in my article Neuroendocrine Cancer - not as rare as you think. Better diagnostic technology, greater awareness and better recording of the correct disease in national cancer registries. The latest figures for Public Health England (covering ~90% of UK), indicate there are now approximately 6000 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, It is calculated from an incidence rate of approximately 9/100,000. This means NEN can now no longer be defined…

06 Mar 2025

By Ronny Allan

1 Comment

Health Union Accredits Ronny Allan as a Certified Patient Leader – February 2025

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Survivorship

Health Union accredits Ronny Allan This was announced in summer 2023 but it took me a while to engage due to my many commitments (including some big personal stuff to sort out) I had a false start, many things took priority for a while but early 2025, I was encouraged to complete it and finally crossed the line in February 2025. Read my Facebook announcement of certification - click here. My formal certificate was recently received, see below! Health Union Acquires WEGO Health - WEGO Health WEGO Health had the largest network of patient leaders in the world, clearly…

02 Mar 2025

By Ronny Allan

0 Comments

A Review of February 2025 from Ronny Allan

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is the monthly summary of February 2025 on RonnyAllan.NET The headline is my award of accredited Patient Leader with Health Union, who I have had a long association with since the days of WEGO Health who they merged with a few years ago. Not sure how I finally found the time to complete after scratching at the surface of the task for 18 months! Someone gave me a deadline - that made a difference! 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…