RonnyAllan.NET – weekly round-up 9th June 2025
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…
A Diagnostic Imaging Study of 64Cu-SARTATE™ for Neuroendocrine Tumours
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…
Ronny Allan – a review of my blog activity May 2025
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…
Ronny Allan’s Top 10 so far in 2025
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.…
Ronny Allan’s weekly roundup 12th – 18th May 2025
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 :-)…
Ronny Allan’s weekly roundup 5th – 11th May 2025
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…
Neuroendocrine Tumours – now you see them, now you don’t!
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…
Ronny Allan’s weekly round-up for 29th Apr – 4th May 2025
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…
Ronny Allan – a review of my blog activity April 2025
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)…
The 6 E’s
An opinion postWhen 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 I…
Repeat after me: Make time for your wellness
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…
What you guys are reading most in the last 7 days
To read any article, just click on the title 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 medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some…
The trouble with the NET (Part 5) – Cancer Diet Myths
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) ‘anti-cancer’ diets and…
These 5 posts about Neuroendocrine Cancer are worth a read, see why inside
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 other blogs…
A review of March 2025 on RonnyAllan.NET
Here is the monthly summary of March 2025 on RonnyAllan.NETThe 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 many personal…
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 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…
Ronny Allan’s weekly round-up for 17 – 23rd March 2025
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…
Living with Cancer: Don’t cross the bridge until you get to it
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,…
Neuroendocrine Cancer: Functional vs Non-functional
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…
Ronny’s weekly round-up for 10 – 16th March 2025
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…
Neuroendocrine Cancer: 10 posts not to miss
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…
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)
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…
Letter from America
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…
Histotripsy – the case for use in UK as Histosonics was awarded early market access
Hot off the press - 15 Dec 2025Anecdotal ReportI have heard that The Wellington, a private hospital in London (and the largest private hospital in UK) is deploying Histotripsy. I know it is frequently used by NHS doctors working privately from the Royal Free. I will update this when I have detail, this anecdotal report may be news of the purchase rather than a commissioning of the equipment ready for treatment. Clearly treatment at this hospital will need to be funded by the individual or covered by a private health policy. Hot off the press - 22 Oct 2025Cambridge treats first NHS cancer…
Early diagnosis of late stage cancer
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…
Small intestine, large surgery
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…
Neuroendocrine Cancer in England: One every 90 minutes
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…
Health Union Certified Patient Leader – Ronny Allan, Living with Neuroendocrine Cancer
Health Union launches an accreditation program for patient leaders. 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…
A Review of February 2025 from Ronny Allan
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 the…
Ronny’s weekly update – 24th Feb – 2nd Mar 2025
New or Republished Blog Posts this week https://ronnyallan.net/2021/05/22/clinical-trial-survivin-long-peptide-vaccine-in-treating-patients-with-metastatic-neuroendocrine-tumors/ https://ronnyallan.net/2025/02/17/the-netest-a-chromogranin-a-replacement-and-more/ . https://ronnyallan.net/2025/02/19/the-5-es-of-my-daytrip/ https://ronnyallan.net/2025/02/20/neuroendocrine-cancer-nodes-nodules-lesions/ https://ronnyallan.net/2025/02/20/abseil-for-nets-featuring-heidi-veacock/ 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. A BIG THANK YOU! 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…
Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma
The riddle.For many years, I've been reading and blogging about Neuroendocrine Neoplasms, NENs for short. NEN is a relatively new term which came after my diagnosis. Nomenclature is still evolving and there is always something to learn. It's also true to say the term 'Neuroendocrine Neoplasms' is the same as saying 'Neuroendocrine Cancer'. These neoplasms are cancers that begin in specialised cells called 'neuroendocrine cells'. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells, particularly the latter. In face one NET specialist said "While the name “neuroendocrine” implies that these tumors involve both nerve cells and…
Ronny’s weekly update – 17th – 23rd Feb 2025
New or Republished Blog Posts this week https://ronnyallan.net/2021/05/22/clinical-trial-survivin-long-peptide-vaccine-in-treating-patients-with-metastatic-neuroendocrine-tumors/ https://ronnyallan.net/2025/02/17/the-netest-a-chromogranin-a-replacement-and-more/ https://ronnyallan.net/2025/02/18/neuroendocrine-cancer-my-distant-lymph-nodes/ https://ronnyallan.net/2025/02/19/the-5-es-of-my-daytrip/ https://ronnyallan.net/2025/02/20/neuroendocrine-cancer-nodes-nodules-lesions/ https://ronnyallan.net/2025/02/20/abseil-for-nets-featuring-heidi-veacock/ 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 Surprised to see this…
Abseil for NETs featuring Heidi Veacock
I have some online friends who I speak to more on message than in public pages or in my private group. I've been chatting with Gary (Gaz) Veacock for over 3 years and watching the path of his wife Heidi who is being looked after by the Royal Free London NHS Foundation Trust - one of the world's top places for treating NETs. Heidi was diagnosed with a NET around 4 years ago and has had surgery and 6 sessions of PRRT and open heart surgery (at St. Barts). Gary is currently serving in the military and we intend to…
Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)
A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of…
The Other 5 E’s by Ronny Allan
I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say, "I can't" than it is to say, "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So, this is the story of my daytrip at the end of summer (and pretty much many days out). The 5 EsThose who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story…
Neuroendocrine Cancer Surgery 3: my distant lymph nodes
Updated 18th February 2025"An unusual disposition of tumours" is a quote by my surgeon. I've written several blogs about this general subject and I can see from my patient group, that I'm not alone"It's early 2025 and I'm still here. But I still have issues and I still can't become complacent - but I am enjoying the ride so to speak, meant as a positive metaphor.It wasn't until a got a somatostatin receptor (SSTR) nuclear scan called "Octreotide Scan" or formally a "Somatostatin Receptor Scintigraphy". These unusual findings have since been backed up by more modern SSTR PET scans. I still …
The NETest® – a Chromogranin A replacement and more?
Update 8th Dec 2025. Hot off the press. New York State Department of Health Grants Approval of Wren Laboratories’ NETest® 2.0 for Clinical Use Clinically Validated Performance In validation across 3,042 NET patients and 1,084 controls/other cancers, NETest 2.0 demonstrated: Sensitivity: 93% • Specificity: 85% • Positive predictive value: 95% • Negative predictive value: 82% • Overall accuracy: 91% These results support broad clinical utility, including: Accurate detection across all NET grades and stages • Identification of minimal residual disease, recurrence, and progression • Monitoring and prediction of therapeutic response, including 177Lu-PRRT • Prognostic value for progression-free and overall survival • Detection of neuroendocrine differentiation in select epithelial tumors Click here to…
Ronny’s weekly update – 10th – 16th Feb 2025
New or Republished Blog Posts this week https://ronnyallan.net/2025/02/14/ronny-allans-ponetry-an-ode-to-lanreotide/ https://ronnyallan.net/2025/02/16/dont-believe-the-hype-neuroendocrine-cancer-myths-debunked/ https://ronnyallan.net/2025/02/15/genetics-and-neuroendocrine-tumors/ https://ronnyallan.net/2025/02/09/ronnys-weekly-update-3rd-9th-feb-2025/ https://ronnyallan.net/2025/02/14/no-one-is-ever-alone-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 Surprised to see this at…
Don’t believe the hype – Neuroendocrine Cancer Myths debunked
Edited and refreshed 17th November 2024OPINION There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasiseSimply untrue. They are a heterogeneous group of tumours. Read more hereMyth 2: All Neuroendocrine…
Genetics and Neuroendocrine Tumors
Hereditary genetics.....where to focusIn recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing as research advances and I cannot guarantee this post will contain all of them.Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumours (perhaps along…
No-one is ever alone on RonnyAllan.NET
On February 14th, I'm so lucky to have Chris to celebrate Valentine's day. I know some people live alone and for some that is their choice. But I also know some don't have that choice, perhaps they are a NET patient who lost their partner, or a partner who lost their loved one to NET. My heart goes out to those today. I have a private group where people can ask questions about NET which is open 24/7 365 days per year. No-one is ever alone in this group. I may be sleeping if you contact me on my public…
Ronny Allan’s ‘PoNETry’ – An Ode to Lanreotide
Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I also have one on Invisible Illness - click here Click here and answer all questions to join my private Facebook group Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’ Sign up for my newsletters - Click Here Disclaimer My Diagnosis and Treatment History Follow me on twitter Check out my online presentations Check out my WEGO Health Awards Like my new awareness…
Lanreotide and Keytruda – the PLANET study (NCT03043664)
Update 13th February 2025. In my main coverage of Immunotherapy for Neuroendocrine Neoplasms (NENs), you will see a section where one NET specialists described Neuroendocrine Tumours as an “immunological desert”. What was meant by is that there’s little evidence immunotherapy is effective in the majority of Neuroendocrine Tumours (NETs). The output from this trial continues to back that view. It is important to note the nomenclature of NETs rather than NENs as almost all the immunotherapy drug approvals to date have been for Neuroendocrine Carcinomas (NECs). As the trial abstract conclusion said, "We conclude that immune checkpoint blockade had low…
5 posts not to miss on Ronny Allan’s blog
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.…
Ronny’s weekly update – 3rd – 9th Feb 2025
New or Republished Blog Posts this week It's been an unforgettable week. In addition to the challenges of day to day living including any responsibilities beyond where I live, I seem to have crammed quite a lot in. Monday was mainly supporting others outside the NET community. At the other end of the spectrum, Tuesday was a quick trip to London to take part in Macmillan's World Cancer Day. As a Macmillan Cancer Voice, I was treated to a discussion between the UK Government's Health Minister (Wes Streeting) and well known BBC political commentator Nick Robinson. I didn't get a…
Living with Cancer – Worrier or Warrior?
If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article…
4th February World Cancer Day 2025 – United by Unique
What is World Cancer Day? World Cancer Day is an initiative of the Union for International Cancer Control (UICC), the largest and oldest international cancer organisation dedicated to taking action on cancer. UICC unites and supports the cancer community in its efforts to reduce the global cancer burden, promote greater equity and ensure that cancer control remains a priority on the global health and development agenda. Founded in 1933 and based in Geneva, Switzerland, UICC has more than 1120 member organisations in over 172 countries and territories. The membership base includes the world’s major cancer leagues and societies, research institutes, treatment centres, hospitals, ministries…
Ronny’s weekly update – 27th Jan – 02 Feb 2025
New or Republished Blog Posts this week https://ronnyallan.net/2025/01/26/theres-no-such-thing-as-a-tickbox-neuroendocrine-cancer-patient/ https://ronnyallan.net/2025/01/27/ronnys-weekly-update-20-26-january-2025/ https://ronnyallan.net/2025/01/28/neuroendocrine-cancer-not-all-answers-are-black-and-white/ https://ronnyallan.net/2025/01/29/expanding-prrt-trial-of-177lu-edotreotide-solucin-compete-trial/ https://ronnyallan.net/2025/02/01/a-review-of-january-2025-from-ronny-allan/ 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 I guess you like my…
If you don’t understand the heterogeneity of Neuroendocrine Neoplasms, it’s likely you don’t really understand Neuroendocrine Neoplasms
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 "heterogeneity" to refer to the quality or state of being heterogeneous, meaning the presence of diverse components within a group or system; both terms indicate a lack of uniformity or consistency. You will note I used the term Neuroendocrine Neoplasms here - that is in line with formal naming conventional per agreed International Agency for Research on Cancer (IARC) terms. It is…