You may sometimes feel like you’re not surviving but if you’re reading this then you most definitely must be!
For the first few years after my diagnosis, I avoided using the word ‘survivor’ in relation to my incurable cancer. I had no idea what was going to happen. It just didn’t seem to sit right despite the fact I’m a ‘glass half full’ kind of guy.
However …….. I was studying the term ‘Survivorship’ and found it also applies to those living with incurable and long-term cancer. This piece of research totally changed my thinking.
Today is National Cancer Survivors Day (which seems to have turned rather international) – well done NCSD.Org – you should check out the site and sign up for their newsletter.
What is ‘Survivorship’?
The definition differs slightly between national cancer advocacy organisations but it would appear it also means “Living with, through, and beyond cancer“ which is a UK term. According to these definitions, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long-term, to either reduce the risk of recurrence or to manage chronic disease. It follows that those with incurable Cancers such as my own (Neuroendocrine) should be included under the term ‘Survivorship’.
Here’s a great quote I found in relation to the term ‘survivor’:
Times are changing
I think it’s useful to look at overall statistics for survivorship to contextualise why the word ‘survivor’ might actually be more apt than it was 20 years ago. For example, in the UK, more than one in three people (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause will have doubled over the past 20 years. I’m seeing similar reports from USA too where, for example, the number of cancer survivors is predicted to rise by a third by 2026 (15 million to 20 million). Almost half of the current survivors are aged 70+. In another example, the US National Cancer Institute (NCI) is predicting:
‘Silver Tsunami’ of Cancer Survivors in the next quarter century (read here).
There is also a very recent article which confirms this thinking, let me quote a bit of it: The cancer death rate has dropped by 23 percent since 1991, with some even larger gains in types of cancer that used to be extremely lethal. This means there are more and more patients like Thornton who are neither dying from cancer nor defeating it entirely. Instead, they’re learning to live with it. Full article here.
Of course, it must not be forgotten that many people will need support to maintain a decent quality of life and be supported with ongoing and long-term treatment. These are both challenges global health systems need to face with rising cancer prevalence. And both of these challenges will greatly affect my own type of cancer – Neuroendocrine. This is why I’m a very strong advocate for more focus on some of these support-type issues and unmet needs, and the resources to deliver them.
So, does that mean I’m a SURVIVOR?
My research indicates this can be a very individual thing. I guess ‘survivor’ does not appeal to all people who simply have a ‘history of cancer’; and most likely for different reasons. For those with incurable or long-term cancers, some people might not think of themselves as a survivor, but more as someone who is “living with cancer.” Some may feel like they’re living but not surviving. I get that and it potentially resonates with my reluctance to use the ‘S’ word for a short period after my diagnosis. Thinking this topic through has made me compare where I was at diagnosis and where I am now. Also, I’ve considered what I’ve been able to do and what I have plans to do, despite my condition. I’ve done so much, been to so many places since I was diagnosed, and got plans to do much more, I must be surviving! Perhaps the phrase “I got this” was my subconscious thought in the picture I’ve used below.
Stage 4 cancer and I’m still here after 15 years. Sounds like surviving to me.
You may sometimes feel like you’re not surviving but if you’re reading this then you most definitely must be?
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- Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)
Vitamin D deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) — but that does not automatically mean your deficiency is caused by your NET. Vitamin D deficiency is widespread in the general population, particularly in northern latitudes, older adults, and people with limited sun exposure. However, NET patients accumulate multiple, well‑recognised risk factors,… Read more: Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol) - Cancer: Words are important but so is context
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… Read more: Cancer: Words are important but so is context - Newsletter covering January and February 2026
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… Read more: Newsletter covering January and February 2026 - Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin)
Vitamin B12 deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) – what that means is there is a chance your deficiency as a NET patients may not be related to your NET. However, it’s a fairly common comorbidity reported in NET patients and it’s important to note the mechanisms differ by primary… Read more: Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin) - Sometimes you gotta climb that bridge!
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… Read more: Sometimes you gotta climb that bridge! - 50 years of marriage – in sickness and in health
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… Read more: 50 years of marriage – in sickness and in health - Zanzalintinib Versus Everolimus in Participants With Locally Advanced or Metastatic Neuroendocrine Tumors (STELLAR-311)
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,… Read more: Zanzalintinib Versus Everolimus in Participants With Locally Advanced or Metastatic Neuroendocrine Tumors (STELLAR-311) - Next Generation Total-Body PET/CT: Challenges and Opportunities
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… Read more: Next Generation Total-Body PET/CT: Challenges and Opportunities - Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumors and Other Somatostatin Receptor 2-Expressing Tumors
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… Read more: Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumors and Other Somatostatin Receptor 2-Expressing Tumors - Ronny Allan – a review of my blog activity December 2025
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. … Read more: Ronny Allan – a review of my blog activity December 2025 - A review of 2025 on RonnyAllan.NET
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… Read more: A review of 2025 on RonnyAllan.NET - 15 years of Christmas!
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… Read more: 15 years of Christmas! - Another Next Generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac
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… Read more: Another Next Generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac - Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it
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… Read more: Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it - Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness
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.… Read more: Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness - Neuroendocrine Tumours (NET) – hiding in plain sight – an awareness post from Ronny Allan
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… Read more: Neuroendocrine Tumours (NET) – hiding in plain sight – an awareness post from Ronny Allan - Ronny Allan – just a wee Scottish guy with a computer
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… Read more: Ronny Allan – just a wee Scottish guy with a computer - Ronny Allan – a review of my blog activity November 2025
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… Read more: Ronny Allan – a review of my blog activity November 2025 - A sample of posts by Ronny Allan
Discover more from Ronny Allan – Living with Neuroendocrine Cancer Subscribe to get the latest posts sent to your email. Type your email… Subscribe - Bone metastases in Neuroendocrine Tumours (NET)
Many of you will know that I am a stage IV small intestine NET and I have one bone metastasis (BM) reported. The initial evidence of this BM came from my very first Ga68 PET scan. It said “there is intense focal uptake of tracer in the right 11th rib”. This rib is at the… Read more: Bone metastases in Neuroendocrine Tumours (NET) - MP0712 (212Pb x DLL3), Radio-DARPin – DLL3 Radioligand Therapy Trial for Neuroendocrine Neoplasms
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… Read more: MP0712 (212Pb x DLL3), Radio-DARPin – DLL3 Radioligand Therapy Trial for Neuroendocrine Neoplasms - It’s been 15 years since my “big surgery”
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,… Read more: It’s been 15 years since my “big surgery” - The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century
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… Read more: The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century - Reframing Neuroendocrine Neoplasms Beyond “Rare”
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… Read more: Reframing Neuroendocrine Neoplasms Beyond “Rare” - Every stripe is lost awareness
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… Read more: Every stripe is lost awareness - Ronny Allan – a review of my blog activity September and October 2025
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… Read more: Ronny Allan – a review of my blog activity September and October 2025 - Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide
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… Read more: Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide - 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) 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,… Read more: Reports of my death have been greatly exaggerated….. the pitfalls of Artificial Intelligence (AI) - I made it to 70!
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… Read more: I made it to 70! - 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) 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… Read more: European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for appendiceal neuroendocrine tumours (aNET) - Weekly roundup from Ronny 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… Read more: Weekly roundup from Ronny 20th – 26th October 2025 - Weekly roundup from Ronny 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… Read more: Weekly roundup from Ronny 13th – 19th October 2025 - Neuroendocrine Cancer: a needle in a haystack?
Reviewed and edited 6th December 2024 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 2017 and also in many other places), there is still a lot of ground to cover. There are a number of reasons why… Read more: Neuroendocrine Cancer: a needle in a haystack? - 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… Read more: 10 Random Blog posts Set 1 – RonnyAllan.NET - Immunotherapy and Neuroendocrine Neoplasms
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… Read more: Immunotherapy and Neuroendocrine Neoplasms - Weekly update 22nd September 2025
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… Read more: Weekly update 22nd September 2025 - The Treachery of Pheochromoctyomas and Paragangliomas – please think of it!
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… Read more: The Treachery of Pheochromoctyomas and Paragangliomas – please think of it! - The 4 Cs – Causation, Correlation, Coincidence and Confounding Factors
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… Read more: The 4 Cs – Causation, Correlation, Coincidence and Confounding Factors - Ronny Allan – a review of my blog activity August 2025
Here is the monthly summary of August 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… Read more: Ronny Allan – a review of my blog activity August 2025 - Last week on Ronny Allan dot NET – 11-17 Aug 2025
It’s been an amazing week on my Facebook pages with some knock on effect on my website. I have been working on (and focussing on) my main Facebook page and I appreciate the support from you guys. Sharing a facebook post has proven to be very powerful for some of my posts on that page… Read more: Last week on Ronny Allan dot NET – 11-17 Aug 2025 - 2025 Surveillance Update from Ronny Allan: “No evidence of progressive disease”
It’s only a couple of weeks since I celebrated my 15th year since diagnosis of metastatic small intestine Neuroendocrine Tumour (NET) at Grade 2. Thinking back to that period of my life, I’m happy but also slightly amazed to be celebrating such a long milestone having been diagnosed with cancer at Stage IV. I think… Read more: 2025 Surveillance Update from Ronny Allan: “No evidence of progressive disease” - Surgery is risky but so is driving a car
I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks, and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to… Read more: Surgery is risky but so is driving a car - I may look well, but you can’t see my battles!
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… Read more: I may look well, but you can’t see my battles! - NETTER-3 – Clinical Trial: [177Lu]Lu-DOTA-TATE in Patients With Grade 1 and Grade 2 Advanced GEP-NET
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… Read more: NETTER-3 – Clinical Trial: [177Lu]Lu-DOTA-TATE in Patients With Grade 1 and Grade 2 Advanced GEP-NET - Ronny Allan – a review of my blog activity July 2025
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… Read more: Ronny Allan – a review of my blog activity July 2025 - Sometimes you gotta climb that hill because it’s a better view!
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 –… Read more: Sometimes you gotta climb that hill because it’s a better view! - Weekly Roundup on RonnyAllan.NET – 28th July 2025
An exciting week with many memories, cancerversaries and personal events. - 15 years since diagnosis, I’m still here
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… Read more: 15 years since diagnosis, I’m still here - My NET is different than yours
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… Read more: My NET is different than yours - Ronny’s Weekly Roundup 14th – 20th July 2025
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 – Ronny Allan – featured postGo straight to the facebook post – click here or go straight to… Read more: Ronny’s Weekly Roundup 14th – 20th July 2025 - Ronny Allan’s Glossary of Terms (Basic Edition)
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… Read more: Ronny Allan’s Glossary of Terms (Basic Edition) - Medical Stories – Neuroendocrine Tumors (NETs): Anthony’s Story
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… Read more: Medical Stories – Neuroendocrine Tumors (NETs): Anthony’s Story - RonnyAllan.NET – weekly round-up 7th – 13th July 2025
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… Read more: RonnyAllan.NET – weekly round-up 7th – 13th July 2025 - Hot Saturday cycle ride
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!)… Read more: Hot Saturday cycle ride - 2025: A Review of the 1st half of the year on RonnyAllan.NET – Living with 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… Read more: 2025: A Review of the 1st half of the year on RonnyAllan.NET – Living with Neuroendocrine Cancer - Ronny Allan – a review of my blog activity Jun 2025
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… Read more: Ronny Allan – a review of my blog activity Jun 2025 - RonnyAllan.NET – weekly round-up 23rd-30th June 2025
New or Republished Blog Posts this week A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO) DLL3 Expression in Neuroendocrine Neoplasms – an overview An ENETS Position Statement on nutritional support in Neuroendocrine Neoplasms RonnyAllan.NET – weekly round-up 23rd June 2025 Currently trending on Ronny Allan Page… Read more: RonnyAllan.NET – weekly round-up 23rd-30th June 2025 - A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO)
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… Read more: A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO) - DLL3 Expression in Neuroendocrine Neoplasms – an overview
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… Read more: DLL3 Expression in Neuroendocrine Neoplasms – an overview - An ENETS Position Statement on nutritional support in Neuroendocrine Neoplasms
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… Read more: An ENETS Position Statement on nutritional support in Neuroendocrine Neoplasms
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I’m a survivor! Pancreatic NET stage 4, Grade 2. Diagnosed 11 months ago! In this most year I’ve had 4 surgeries and haven’t felt better in years! I love my life and most days I am living it more fully than before diagnosis. I am motivated to survive in large part for my beautiful children, who are 8 and 3.
Thank you Ronny ! Your posts help me to improve my english 😉 and to understand our “rare disease” with fun and smiles most of the time 😄
What do you think about the term “warrior” instead of “survivor”…? We survive each day, one day after another, but we’re not sure to be the winner at the end, to survive. But one thing is sure : we fight, we are warriors.
Best wishes from France 💜
I have survived oesophageal cancer and breast cancer and what ever else it cares to throw my way
Glad to hear!
You light up our lives Ronnie. I’m a survivor 6 years with liver and bowel resection 6 rounds of PRRT and octreotide Injections aren’t we lucky to have such great medical treatments and emotional support from you and the Unicorn foundation in Australia🦄
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Thank you and hope you are doing OK!
I was diagnosed two years ago. Primary in my lung, removed in a lobectomy. METS now being controled with Sandostatin. I work, holiday, run- I have a fantastic quality of life. My personal worries now have moved from dieing to living with a poor quality of life. I wonder how many of us have a compromissed life style, due to pain, medication side effects, etc x
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Yes, living with NETs is very possible even with distant metastasis. However, treatment can come with side effects, some long term. Most people need to adjust to a new acceptable and tolerable normal and work to improve that. Intolerable effects will need support and perhaps further treatment. This is a huge area, topical; and some of it is currently an unmet need in this cancer and many other types too.
I definitely consider myself a survivor! As long as I’m alive, still living with my cancer, I’m a survivor.
Good argument for the word Ronny, not sure it is one I would use, but each to their own. For me it is more about just trying getting on with it, but I don’t think there is a single word for that!!