A Christmas 2024 message from Ronny
Background to 2024 I've only ever sent these on Facebook but since last year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter (X), Facebook, Newsletter or direct from a subscription to my website. All of the outlets above have kept my viewing figures high, I guess I can't complain about a 2024 total of over 285,000 blog hits (so far), a figure higher than 2023. I've had a lot of personal issues to deal with in 2024, including some strange health stuff, so I'm delighted this…
Lanreotide – 15 more years
I first wrote this blog early in 2015 and I borrowed the term 'Four More Years' from the US presidential election campaigns, a big topic at that time. At the time of writing I had just celebrated being on Lanreotide for 4 years (my first treatment was 9th December 2010). Curiously I was only asking for another 4 years but my blog title meant I was somewhat restricted in choice of timescale! I posted the original below. I now find myself writing a follow-up post 10 years later. Had someone asked me if I thought I would be repeating this…
Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years
Self Pity or Self Help? I'm not one for wallowing in self-pity or accepting invites to pity parties. It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in…
Neuroendocrine Cancer – tumour markers and hormone levels
Originally published 2016, updated October 2025BackgroundSome people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time. Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a…
RonnyAllan.NET – A Review of November 2024
Here is the monthly summary of November 2024 on RonnyAllan.NETI paid little attention to 10th Nov awareness (I do enough on the other 364 days!) plus it is a personal time for me with surgery cancerversaries etc. The top post this month was totally unexpected as it was an update of quite an old entry on my website - just goes to show that some studies go on for many years! 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…
It’s scary searching Cancer online
When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date. As a novice…
Happy Thanksgiving
I have been posting this every year on last Thursday in November and I kept forgetting that other countries other than USA (and Territories of the United States) also do Thanksgiving but mostly on different dates. This includes (but is probably not limited to): Canada, Brazil, Grenada, Liberia, Saint Lucia, Leiden (Netherlands), Norfolk Island (Australia). I hope you all had/have a great Thanksgiving Day! Turkey and Sleep Now ........ I hate to stereotype but I guess a lot of you might be eating turkey on Thanksgiving Day? No Thanksgiving is complete without a turkey at the table (... so I'm told!). …
The Invisible NET Patient Population
First published August 2017 but updated several times UPDATED TO INCUDE PUBLISHED US FIGURES IN 2025 OPINION I found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you…
Temozolomide and Survivin Long Peptide Vaccine (SurVaxM) for the Treatment of Patients With Progressing Metastatic Neuroendocrine Tumors
What are cancer vaccines?I remember seeing a comment by a NET Specialist on twitter saying, "We need vaccines". This was in response to a tweet from another NET Specialist reporting dismal data from an immunotherapy drug for Neuroendocrine Carcinomas. In 2020/2021, the word vaccine has been used a lot, but this specialist was not inferring anti-viral treatment, he was talking about "cancer vaccines", an emerging discipline in science where vaccines act as an immunostimulant to treat cancer. This prompted me to look around and found this trial which may be of interest to you. However, before anyone gets too excited,…
18 days in November 2010 – by Ronny Allan
I'm publishing this 14 years to the day I walked out of hospital holding the hand of my wife Chris.After a diagnosis of advanced Neuroendocrine Tumours on 26th July 2010, many things were lined up for me. Some were on the critical path and had to be sequenced. Many of them were pieces of evidence to support a treatment, which for many with advanced Neuroendocrine Tumours, offered the best hope for living longer - debulking surgery. People with very aggressive cancers at Stage IV may not be offered surgery, but one of the features of low grade metastatic NETs i.e. advanced…
Ronny Allan’s roundup week ending 24th November 2024
New or Republished Blog Posts this week https://ronnyallan.net/2024/11/24/in-the-war-on-neuroendocrine-cancer-lets-not-forget-to-win-the-battle-for-better-quality-of-life/https://ronnyallan.net/2024/11/23/carcinoid-whats-in-a-name/https://ronnyallan.net/2024/11/21/running-in-the-family-multiple-endocrine-neoplasia-men/https://ronnyallan.net/2024/11/14/update-oncolytic-virus-trials-for-neuroendocrine-cancer/Twitter, X and BlueskyTwitter became X and still called twitter but Bluesky is a new kid on the block, works like twitter/X. You can get me on Bluesky by clicking here (clearly you also need a Bluesky account).https://bsky.app/profile/ronnyallan.bsky.socialFacebook - Neuroendocrine Cancer (the original)This is my main page posting blogs and other NET stuff. Click here to browse the page and follow or like please if you've not already done so. Feed below too.Facebook - World Neuroendocrine Cancer Day (the original)This is my other page posting blogs and other NET stuff but mainly focussed on…
In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life
Originally published March 2017 OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…
Carcinoid – What’s in a name?
A quick primer on the word 'CARCINOID'. It originates from the term 'Carcinoma-like'. 'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'. This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion. The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour. That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed…
A spotlight on Multiple Endocrine Neoplasia (MEN)
First published 2015, updated for 2025.OverviewWe all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN). I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine-related effects.MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues). Neoplasia is just another name…
Update – Oncolytic Virus Trials for Neuroendocrine Cancer
Updated 28th May 2025 What exactly are Oncolytic Viruses? Oncolytic Viruses infect and break down cancer cells but not normal cells. Oncolytic viruses can occur naturally or can be made in the laboratory by changing other viruses. Certain oncolytic viruses are being studied in the treatment of cancer. Some scientists say they are another type of immunotherapy whilst others say it's too early to classify them as such. The good news is that Neuroendocrine Cancer seems to figure in this work with two of these viruses apparently working on mice to date. Listed below are two active projects involving NETs,…
Living with Neuroendocrine Tumours – the 14 year itch
Following a diagnosis of metastatic small intestine NET in 2010, I wrote a blog in 2017 entitled "The 7 year itch". I thought I would re-release it having reached 14 years and almost 7 years since it was published. When I wrote it, I was inferring a link between Lanreotide and my ongoing leg itching. After some years, I also started to see correlations between itching and many other things including but not limited to the seasons of the year (i.e. it seemed to be worse in the winter). As another example, I also noticed itchy skin could be caused…
I woke up on World Neuroendocrine Cancer Day
1 year after 2 x surgery - at a ball organised by my surgeon Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after surgery 14 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and…
Piss off Cancer, it’s been 14 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, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention,…
Pancreatic cysts – something or nothing?
What are cysts?Cysts are sacs or capsules that form in the skin or inside the body. They may contain fluid or semisolid material. Although cysts can appear anywhere in the body, most frequently they live in the skin, ovaries, breasts or kidneys. Most cysts are not cancerous.What are pancreatic cysts?Pancreatic cystic lesions are being found more frequently on cross-sectional imaging studies (e.g. conventional imaging such as CT/MRI/Ultrasound). Although many of these cysts are discovered incidentally in asymptomatic patients, many have a malignant potential. Coupled with the lack of a single diagnostic test for accurate risk stratification and the risks of…
48 hours in November 2010 – Awareness and Hope from Ronny Allan
D Day D for Diagnosis. I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would…
Don’t miss these 5 posts on RonnyAllan.NET
Just click on the pictues and read (and hopefully share!) https://ronnyallan.net/2024/07/18/neuroendocrine-cancer-is-not-a-type-of-another-cancer-period/ https://ronnyallan.net/2022/11/23/the-ecstasy-of-neuroendocrine-cancer-survivor-wilko-johnson/ https://ronnyallan.net/2018/03/16/namaste-irrfan-khan/ https://ronnyallan.net/2024/08/27/the-5-es/ https://ronnyallan.net/2017/06/08/living-with-neuroendocrine-cancer-8-tips-for-conquering-fear/ 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. Please also note that mention of a…
Neuroendocrine Cancer – no sweat!
I see so many questions and comments in my private group about sweating, in particular, 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the…
A Review of October 2024 on RonnyAllan.NET
Here is the monthly summary of October 2024 on RonnyAllan.NET Awareness 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 post graphic to read it. I wish I could do more but there's just little old me! And Chris too of course for those following my exploits on Facebook Page Ronny Allan. Fortunatey I have a great 2IC and admin team in my private group, so that runs as…
Piss off cancer – I’m 69.5!
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 would be…
Things to do today
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something…
I wish I had another cancer
AN OPINION POST I’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that). Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’. Ironically, although some cancers are almost certainly worse…
Targeted Alpha-emitter Therapy (TAT) – the wave of the future in nuclear oncology/PRRT?
What is Targeted Alpha-emitter Therapy? Regular PRRT which is authorised for use now, i.e. Lutathera/Lu177 is a beta therapy. Targeted Alpha Therapy is based on the coupling of alpha particle emitting radioisotopes to tumour selective carrier molecules, such as monoclonal antibodies or peptides. These molecules have the ability to selectively target tumour cells even if they are spread throughout the body. They recognize the targeted cancer cells through antigens that are expressed on the cell surface and can bind selectively to these cells, similar a key fitting into a lock. In targeted alpha therapy these carrier molecules serve as vehicles…
Rosacea – the NET Effect
Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today. It normally starts with a stinging feeling, an indication I'm about to experience some sort of inflammation. What eventually happens is something which looks like a 'whitehead' which I now know to be a 'pustule'. Sometimes there are multiples, and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering, but they tend to leave reddish marks which eventually fade. Very infrequently, these pustules would appear on…
Pancreatic Cancer vs Neuroendocrine Cancer of Pancreatic Origin
Reviewed and updated 24th October 2024I campaign hard for Neuroendocrine Cancer awareness including continually pointing out that a Neuroendocrine Cancer with a pancreatic primary is NOT Pancreatic Cancer as is often quoted in the press. The two main reasons I take up these campaigns are as follows:1. They are totally different cancers despite an anatomical relationship. Although they can share a similar presentation, they can have different signs, different treatments, and vastly different prognostic outcomes. Anyone looking for useful information on either needs to be very careful on interpretation, they could end up with very bad advice and in some…
5 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)
Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrased, they don't understand the specific cancer, they don't understand the prognostics and are scared to ask more. News outlets and social media don't really help them get to grips with these situations, everyone is receiving chemotherapy and will therefore lose their hair and everyone is going to die right? Wrong, the cancer story is changing. Sure, many people do die of cancer, and that's heartbreakingly sad. But today, many cancers are now treatable, many people survive, some even living with cancer like they would with a…
Neuroendocrine Tumour (NET) – don’t let it be a Crisis
Update November 2025. This new document from the same surgeon and NET team below has further justified why they now adopt a totally different approach to nearly everyone else and they can back it up with evidence. This followed the updated blog below "Do we need a new model for carcinoid crisis in NETs?". It looks like they have deployed this 'new model' given their statement "Based on our research, at Oregon Health & Science University, we have entirely stopped using octreotide during operations, relying instead on vasopressors and treatment directed at managing distributive shock". Worth a read. Intraoperative Carcinoid…
Ronny Allan’s Weekly roundup – 7th to 13th October 2024
Weekly roundup 7th - 13th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/11/5-blog-posts-worth-reading/ https://ronnyallan.net/2024/10/10/did-you-mean-to-lose-weight/ https://ronnyallan.net/2024/10/09/neuroendocrine-cancer-liver-directed-therapy/ https://ronnyallan.net/2024/10/07/ronny-allan-weekly-roundup-30th-september-6th-october-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing 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…
5 blog posts worth reading
Just click on the pictues and read (and hopefully share!) 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. Please also note that mention of a clinical service, trial/study or therapy…
Weight – the NET Effect
ForewordAfter my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment.Fast forward 4 years, I had to buy some more suits as my weight was going back on.Fast forward 14 years and my weight is…
Neuroendocrine Cancer – Liver directed therapy
October 2024. Updated to include Drug-Eluting Beads TACENeuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver, there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes-indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known to be highly vascular which is a feature where growth inhibition and symptom relief may be achieved by specific 'blocking' agents - this is particularly the case with liver metastases in well-differentiated Neuroendocrine Tumours (NETs).Spread to the liver may…
Ronny Allan – weekly roundup 30th September – 6th October 2024
Weekly roundup 30th - 6th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/05/ronny-allan-feedback-recommendations-and-reviews/ https://ronnyallan.net/2024/10/04/ronny-allan-background-to-my-diagnosis-and-treatment/ https://ronnyallan.net/2024/10/03/neuroendocrine-neoplasms-high-grade/ https://ronnyallan.net/2024/09/30/a-review-of-september-2024-on-ronnyallan-net/ https://ronnyallan.net/2024/09/30/ronny-allans-weekly-roundup-23rd-29th-september-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing 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…
Ronny Allan – Feedback, Recommendations and Reviews
I'm so proud to receive many reviews from many healthcare and cancer organisations. The ones below are featured and the list below that is a selection of patient received comments separate from my Facebook recommendations. "Proud to have worked on this project with some marvellous people including Ronny Allan" Kay WesleyCEO "Internationally known Neuroendocrine Cancer Patient Leader - Ronny Allan is certainly making his mark on the online health community" "Ronny Allan is dedicated to making a difference! And that makes him MORE than the challenges he faces!" Previous Next Dr Mark Lewis Dr Eric Liu Dr Julie Hallet Dr…
Ronny Allan – Background to my Diagnosis and Treatment
Ronny Allan - Diagnosis and Treatment - Neuroendocrine Cancer From diagnosis to start of treatment The build-up to my diagnosis was covered in this blog article (Diagnosis - I'm no longer in Control). This chance scenario led to a set of routine blood rests which highlighted a low haemoglobin score. It was low enough to be referred to a specialist with the initial diagnosis being Iron Deficiency Anaemia. After a plethora of tests including bloods, CT scan, Ultrasound scan and a liver biopsy (Ki67 5+), metastatic Neuroendocrine Tumour (NET) at Grade 2 was confirmed. During the secondary care diagnostic investigation,…
A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms
Reviewed and updated 26th June 2024High Grade Neuroendocrine Neoplasms - the forgotten patient group?When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short. Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming. I too am guilty of having a large Facebook site falling into this category. It's little wonder that those with high grade disease can often feel like the forgotten patient group. Clearly all…
A Review of September 2024 on RonnyAllan.NET
Here is the monthly summary of September 2024 on RonnyAllan.NET The top post 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 post graphic to read it. 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 away for some of…
Ronny Allan’s weekly roundup – 23rd – 29th September 2024
Weekly roundup 23rd - 29th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/29/f-you-cancer-im-still-here/ https://ronnyallan.net/2024/09/28/cessation-of-somatostatin-analogues-after-prrt-in-mid-hind-gut-and-pancreatic-neuroendocrine-tumours-stopnet/ https://ronnyallan.net/2024/09/25/sometimes-you-gotta-climb-that-hill-even-if-you-dont-want-to/ https://ronnyallan.net/2024/09/24/i-am-not-a-zebra/ https://ronnyallan.net/2024/09/24/weekly-roundup-from-ronny-allan-16th-22nd-september-2024/ https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to browse my website Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs…
F*** you cancer, I’m still here!
On 26 July 2010, had you said I'd be writing this 14 years later, I would have said no.I was diagnosed on 26th July 2010. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought. 10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think. Think great doctors, better treatments, better guidelines and sprinkle some luck on top. Some might say attitude helps but clearly scientific proof might be lacking…
Cessation of Somatostatin Analogues After PRRT in Mid, Hind-Gut and Pancreatic Neuroendocrine Tumours (STOPNET)
One of the common question areas I see in my patient group of 10,000+ members is about the use of somatostatin analogues (SSAs) prior to, during and after treatment with Peptide Receptor Radionuclide Therapy (PRRT). On a similar subject, I also see people asking about stopping SSAs long term regardless of PRRT, particularly if they are NED and stable. People also ask about individual patients who have decided to stop them and how they managed etc. Clearly these are difficult discussions and anyone reading should be listening to their doctors, not mimicking what they read on patient groups. But they are…
Sometimes you gotta climb that hill, even if you don’t want to
When I was diagnosed, I was very compliant with my doctors and nurses. Whatever test they wanted, I'd cooperate. Whatever hurdle they wanted me to jump over, I would jump. I always had questions though, I find an inquisitive mind helps with coping. That's not to say I enjoyed each experience but what I knew it was required to move onwards to the next step - everything was on the critical path. In particular, the liver biopsy was a challenge but totally necessary to get to the diagnosis which would then dictate treatment and prognosis. Surgery for Stage IV small intestine…
I am not a zebra
One thing I've discovered when posting about this subject..... I'm not alone. In fact, I was actually surprised how many people cannot abide the infatuation with black and white striped animals eminating from certain parts of the NET community (incuding certain doctors). The main issue I have within the NET communiity is that it's based on 1940s thinking and in the days when science and statistics were not advanced as they both are today. Certain countries, organisations and individuals focus on this more than others, perhaps they're just out of date or quite like being part of the 'cult of…
Weekly Roundup from Ronny Allan – 16th – 22nd September 2024
Weekly roundup 16th - 22nd September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance https://ronnyallan.net/2024/09/21/weekly-roundup-9th-15th-september-2024/ https://ronnyallan.net/2024/09/20/cabozantinib-for-advanced-neuroendocrine-tumours-another-tool-in-the-treatment-toolbox/ https://ronnyallan.net/2024/09/19/childhood-cancer-awareness-month-neuroendocrine-cancer-featuring-elizabeths-story/ https://ronnyallan.net/2024/09/19/the-trouble-with-the-net-it-can-spread-false-hope/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing 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…
Don’t be underactive with your Thyroid surveillance
From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement. One month after taking these drugs, my thyroid…
Weekly Roundup 9th – 15th September 2024
Weekly roundup 9th - 15th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Latest Blog Posts My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group. It follows that supporting my blog is also supporting those other outlets. Click on the 4 blogs below published over this period. https://ronnyallan.net/2024/09/09/weekly-round-up-2nd-8th-september-2024/ https://ronnyallan.net/2024/09/10/ever-wonder-what-caused-your-neuroendocrine-cancer/ https://ronnyallan.net/2024/09/11/neuroendocrine-cancer-turn-surveillance-into-a-positive/ https://ronnyallan.net/2024/09/15/eat-that-doughnut/ Blog posts currently trending (last 48 hours) My Facebook Acivity Public Page…
CABOMETYX® (cabozantinib) for pNET and epNET
18th October 2025. Exelixis Announces Results from Subgroup Analysis of CABINET Phase 3 Pivotal Trial Evaluating CABOMETYX® (cabozantinib) in Advanced Lung and Thymic Neuroendocrine Tumors at ESMO 2025 | Exelixis, Inc. – CABOMETYX reduced the risk of disease progression or death by 81% versus placebo in patients with advanced lung or thymic neuroendocrine tumors (NET) – – The lungs are the second most common NET site of origin, yet limited treatment options are available Read announcement from Exelixis here. 23rd September 2025. UK MHRA grants marketing authorization Ipsen (Euronext: IPN) announced today that UK MHRA has granted marketing authorization for cabozantinib…