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. Like this page please. Awareness Facebook Like this page please. Follow me on X (formerly twitter) Check out my online presentations Check out my WEGO Health Awards Check out my Glossary of Terms - click here Please Share this post for Neuroendocrine Cancer awareness and to…
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 I could not explain, things that I did not think were serious enough to speak to a doctor. And what would this doctor have said at the time? I was never misdiagnosed because I was never diagnosed with anything that wasn’t already there and documented.…
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 the month in hospital recovering from that. It's also a month where I feel real awareness of Neuroendocrine Cancer takes a backwards step as others continue with the 1980s theme instead of getting into the 21st century. However that said, I had a very good…
Bone metastases in Neuroendocrine Tumours (NET)
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 bottom of the ribcage at the back of the body. Along with rib 12, they're called 'floating ribs' as only one end is joined to another part of the cage. Closet organs to this rib is the posterior liver…
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 to spread and expand. Unfortuantely, some elements of the NEN communmity remain entrenched in old thinking, in flawed thinking. I can only describe them as negative disruptors, clinging on to this old thinking. It seems like they refuse to change their mind or plan to…
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 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…
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, and occasionally ranting about neuroendocrine cancer. To be fair, I do spend a lot of time digging through esoteric subjects such as pathology reports and clinical trial data, so perhaps someone mistook my silence for eternal rest. Or maybe they just assumed that anyone who’s…
Piss off cancer – 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 at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what…
Immunotherapy and Neuroendocrine Neoplasms
Updated 24th September 2025. IntroductionThere's a lot of Immunotherapy stuff out there! The picture regarding its use in Neuroendocrine Neoplasms is not clear and there is no general roadmap printed. I first heard of Immunotherapy for NETs following attendance at ENETS 2017 in Barcelona. The presentation that sticks out was one given by Dr Matthew Kulke, a well-known NET Specialist in Boston. My reaction to the presentation was one of 'expectation management' and caution i.e. it's too soon to know if we will get any success and when we will get it. He also hinted that it's more likely that any…
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 campaign. Click here or the picture below to read the post. Why not join in on the Facebook post - click here. Steve Jobs is always a draw, he's so well known. He may not have taken part in much Neuroendocrine Cancer awareness when he…
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 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…
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 (Neuroendocrine Cancer). Between us we attracted many people from outside the community and many who were not part of the community but now are. Thank you. On my website, I only added a couple of posts last week: 1. 2025 Surveillance Update from Ronny Allan:…
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 it's a sign of many things, including but not limited to, early intervention by inquisitive healthcare professionals following vague symptoms, early access to a NET multidisciplinary team (MDT). Of course, human resilience must also be a factor. I didn't take this diagnosis lying down, I…
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 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…
Weekly Roundup on RonnyAllan.NET – 28th July 2025
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…
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 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, and…
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 - 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…
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 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…
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 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…
RonnyAllan.NET – weekly round-up 23rd-30th June 2025
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…
Don’t delay your blood tests – it’s not good for your health!
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…