The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Reviewed and updated 23rd January 2024 Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought? Background Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (listed below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another. Often the the best diet…
Neuroendocrine Cancer:  My experience with Lanreotide Ipsen

Neuroendocrine Cancer: My experience with Lanreotide Ipsen

On 9th December 2025, I celebrated 15 years of Lanreotide - click here to read about that. Update 11th Jan 2024.  Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen.  Clearly to distinguish its product from the generics now rolling out.  Not seen similar yet for Somatuline Depot (US).  Please note the remainder of this blog covers Lanreotide Ipsen, generics are covered here.  My Lanreotide Experience When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would…
Neuroendocrine Cancer:  Make some noise for this silent cancer

Neuroendocrine Cancer: Make some noise for this silent cancer

Reviewed and updated 9th June 2024One of the key aims of my blog is to create more awareness of Neuroendocrine Cancer, its peculiarities, its effects, its ability to deceive, its ability to kill if left undetected and/or untreated; and its impact on Quality of Life (QoL). There are millions of people out there doing similar with thousands of other conditions. That means even to stand out a little, messages must be compelling, must attract attention; and must catch people's interest. Unfortunately, many campaigns I see are outdated, based on flawed themes from the 1980s and as a consequence, awareness of…
Neuroendocrine Cancer Awareness – let’s move into the 21st century

Neuroendocrine Cancer Awareness – let’s move into the 21st century

OPINIONThe build up to (so called) "NET Cancer Day" (sic) has begun and I can hear hoofbeats becoming louder every day. Is it a horse, is it a zebra etc etc. However, is this aged equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something which is more impactful, up to date, more compelling, more adult, more likely be taken seriously and attract new audiences?  p.s. even our day has a ridiculous name - "NET Cancer" decodes to "Neuroendocrine Tumour Cancer" which is quite ludicrous not only because of the grammar…
Ignore this post about Neuroendocrine Cancer

Ignore this post about Neuroendocrine Cancer

Actually, you must share it widely, people out there will have this disease and need a diagnosis. People already out there with a diagnosis and want more awareness - so go on, ignore the post title and share it! When I was diagnosed, I wasn't feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me, and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the 'long game' and will sometimes take years before it's finally…
Not all cancers are black, white, blue, pink – some are very grey

Not all cancers are black, white, blue, pink – some are very grey

Some people appear to have a fascination with cancer colours.  Nothing wrong with that until it turns into a cult overshadowing everything else.  I saw the same issues coming out of bloggers of varying cancer types via my association with WEGO (now part of Health Union), particularly with Breast Cancer and their pink thing.  Over the last few years, I've seen quite a few posts entitled "Not all Cancer is pink".  I suspect it's a reference to the ubiquitous publicity that many women's cancer-related advocates, bloggers and organisations attract. Although, whether this is publicity that reflects reality or actually works, is…
Try these 5 blog posts

Try these 5 blog posts

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…
Living with Cancer – Turning points

Living with Cancer – Turning points

In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more. A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the…
Ryan Gonzales – wrestling with Pancreatic Neuroendocrine Cancer

Ryan Gonzales – wrestling with Pancreatic Neuroendocrine Cancer

Great story from Ryan who was diagnosed with stage IV Pancreatic NET in 2022.  Ryan is a wrestler and a wrestler coach.  He's therefore used to facing tough situations.  His podcast sponsor has used some fine words which I will leave you to read.  I see many patients facing up to these situatons on a day to day basis but I think it's great that Ryan is telling his story to help others. Ryan is married with 4 children, so, like many of my readers, he has a lot to live for. I wish him the very best as he…
A Review of May 2024 on RonnyAllan.NET

A Review of May 2024 on RonnyAllan.NET

Here is the monthly summary of what we all achieved in May 2024. Something new, something blue and some borrowed too!  Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  Every share spreads awareness and you potentially save someone's life. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. I wish I could do more but there's just little old me!  And Chris too of course for those following my exploits on…
NHS England’s new Cancer Vaccine Launch Pad

NHS England’s new Cancer Vaccine Launch Pad

Update March 2025. The UK government announced their intention to abolish NHS England and bring it back under the Department for Health and Social Care (DHSC) (i.e. a merger).  The change programme will take up to 2 years.  In the meantime, the blog will be updated with new nomenclature when further information is known and announcements are made. Update February 2025.  There was a flurry of activity on my site from USA members as a similar vaccine trial made headline news. This too was an mRNA vaccine from a trial for Pancreatic Cancer.  The news report also said that mRNA technology…
A First-in-Human Phase I Trial With Antibody Drug Conjugate ADCT-701 in Neuroendocrine Tumors and Carcinomas

A First-in-Human Phase I Trial With Antibody Drug Conjugate ADCT-701 in Neuroendocrine Tumors and Carcinomas

What is the objective of this trial? To test a new drug, ADCT-701 (an Antibody-drug conjugate (ADC)), in people with Neuroendocrine Neoplasms (NENs). The eligibility extends to al adults aged 18 and older with NENs. It is listed in the NIH database under clinical trial identify number NCT06041516 (Reference 1 below). What are Antibody-drug conjugates (ADCs)?  Antibody-drug conjugates (ADCs) are innovative biopharmaceutical products in which a monoclonal antibody is linked to a small molecule drug with a stable linker. Most of the ADCs developed so far are for treating cancer, but there is enormous potential for using ADCs to treat other…
I bet my flush beats yours?

I bet my flush beats yours?

Background Neuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some.  Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms.  Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, diagnoses of NET can be…
Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

In this article, I'm discussing the use of probiotics to combat several issues including the general health of the 'gut' including IBS like symptoms,  and the potential issue of small intestine bacterial overgrowth (SIBO), all of which may be related in some way to Neuroendocrine Tumours.  That said, these issue may be regular conditions, nothing to do with NET.  Nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients and nutrition and gut health can become more important issues.  It is also a key factor in maintaining a decent quality of life and for most countries without…
The trouble with the NET (Part 3) – Miracle Cures

The trouble with the NET (Part 3) – Miracle Cures

Since I started blogging, I've had to become quite savvy at forming headlines for my posts as the wording can be a factor in whether someone reads it or not. A post picture can also influence.  There's a third factor and that is credibility - I'd like to think I've worked hard to earn that level of trust in my 'product'. I use the NET to talk about NETs!  I'm a genuine guy with a genuine purpose and I don't want to sell you anything - my 'product' is free. However, the 'NET' can also provide 'misinformation'. Unfortunately 'misinformation' also includes…
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that…
Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Always speak to your specialist before taking vitamin and mineral supplements.   Featuring Tara Whyand Vitamin deficiency is common in the general population so your issue may not be related to NET.  But read on to learn the risks for NET patients. Despite learning early on in my journey that nutrition was going to be a challenge, I sensed the initial focus of my treatment was on getting rid of as much tumour bulk as possible and then controlling (stabilising) the disease through monitoring and surveillance. Clearly I'm happy about that! However, it eventually became clear that the impact of this…
Surgery is risky but so is driving a car

Surgery is risky but so is driving a car

I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks, and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn of 2010 when I first met my surgeon. At that time, there were a few articles about whether surgery or 'biochemistry' was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs). To some extent, these debates continue,…
Other people get cancer, not me

Other people get cancer, not me

I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy.  I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill.  In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'.  I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp speed'.…
Neuroendocrine Neoplasms – not as rare as you think

Neuroendocrine Neoplasms – not as rare as you think

UPDATE AS AT 5th OCTOBER 2025 - USA - Prevalence of Neuroendocrine Neoplasms breaches the Orphan Disease threshold for the first time (officially) In this cross-sectional study evaluating 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is understated as they have excluded some Neuroendocrine Carcinomas from the…
Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Orginal post - 25th Nov 2014.The papers and social media seem to be full of awareness and early diagnosis articles this month.  This coincided with World Neuroendocrine Cancer Day on 10 Nov and Pancreatic Cancer day on 13 Nov.  Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types.  These issues also made it to the conventional media outlets of newspapers, radio and television. Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of…
No Fear or Know Fear?

No Fear or Know Fear?

Edit: This article was written in 2015.  Since then, I have moved to 12-month surveillance periods.  I also changed the title as we are all different.  The article drew in a lot of non-NET people who were attracted by the original title.  It did spread a little bit of awareness but I guess the dozens of bunjee jumpers and other dangerous sports types quickly left when they found out it wasn't about either the famous sports clothing shop or jumping off large structures with NO FEAR! The Original ArticleIt's that time again, every 6 months I need some checks. I've done…
NET Syndromes – chicken or egg?

NET Syndromes – chicken or egg?

We’ve all heard the age-old question about the chicken and the egg?  Scientists claimed to have 'cracked' the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken's ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it! On a similar subject, I'm often confused when someone says they have been diagnosed with 'Carcinoid Syndrome' but not one of associated 'Neuroendocrine Tumours'. So which comes first?  I guess…
Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

What happened to me? Since I was diagnosed in 2010, I've always known about a fibrosis issue in my retroperitoneal area.  It was identified on the very first CT scan which triggered my diagnosis.  Here's how the radiologist described it - "There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness".  Followed by a statement saying that it was "almost certainly malignant".  The second and third scans would go on to describe as "retroperitoneal fibrosis" and "a plaque-like substance".  Interestingly the fibrosis itself does not appear…
Neuroendocrine Cancer – a difficult jigsaw

Neuroendocrine Cancer – a difficult jigsaw

A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn't associated with NETs.Although I chuckled and raised an eyebrow at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task.  I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities/secondary illnesses. After…
Neuroendocrine Cancer? – 10 questions to ask your doctor

Neuroendocrine Cancer? – 10 questions to ask your doctor

On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then. As things progressed in the weeks after 'D-Day', I started to work out…
Neuroendocrine Cancer: Beware But Be Aware

Neuroendocrine Cancer: Beware But Be Aware

An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world.  Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer.  Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen.  Once it's established in the primary location (....or locations),…
Do you suffer from NET Brain?

Do you suffer from NET Brain?

A satirical look at the acronym or abbreviation "NET".   I wrote this after I noticed many non-NET people reading my blogs. The acronym 'NET' (NeuroEndocrine Tumour) can be advantageous to NET advocates and organisations because it occasionally attracts readership from outside the Cancer community when links are accidentally found by 'surfers'. NET just also happens to be a common truncation of the word 'Internet' or 'Network'.  The vast majority will realise the irrelevance (to them) and move on but 1 or 2 might just hang around and take a look.  Bingo - we have spread a little bit of awareness! However, these unintended awareness opportunities…
“You must be doing OK, you’ve not had chemotherapy”

“You must be doing OK, you’ve not had chemotherapy”

If there's a word which is synonymous with cancer, it's chemotherapy.  It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'.I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease.  Cue - lengthy explanation!  I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of cytotoxic chemotherapy.  If you read any newspaper article about cancer,…
Neuroendocrine Cancer – don’t break my heart!

Neuroendocrine Cancer – don’t break my heart!

Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome.  Some doctors may refer to this as a functional tumour. Neuroendocrine Tumours secreting excess amounts of serotonin sufficiently to develop a syndrome currently called Carcinoid Syndrome, which if not diagnosed and treated early enough, or the levels of serotonin ae not controlled following diagnosis, can lead to an additional complication known as Hedinger Syndrome (also known as Carcinoid Heart Disease (CHD)). However, late diagnoses can present with CHD already in place and in some cases, may have led to…
“You’re from Dundee – you must like fighting”

“You’re from Dundee – you must like fighting”

Apparently all Scotsmen wear kilts, have ginger hair, eat nothing but deep fried Mars Bars and they like a good fight!Stereotyping is frequently used to wind people up and can on occasion be used in an irrational or insulting manner.  However, I believe one of those attributes is accurate.  I was once 'volunteered' for boxing because my home town was Dundee!   Read on...Dundee was put on the boxing map in the late fifties/early sixties due to the legendary Dick McTaggart who won a Gold and Bronze medal in two separate Olympic Games (for Great Britain). Many new boxing clubs sprang…
I look well but you should see my insides

I look well but you should see my insides

I'm sat next to patients waiting on their chemotherapy treatment - the "Chemo Ward" sign above the door gives it away.  I'm here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay.  I look all around; the temporary beds and the waiting room are full and all I can see are people who don't look as well as I do.  Some have hats or bandanas partly disguising the loss of hair. I feel for them.No matter how many visits I make, I can't help feeling out of place in a Cancer ward. I'm not…
Surgery for NETs – Chop Chop

Surgery for NETs – Chop Chop

May 2024.  a refurbish from some of my early work in 2015.  I'm fairly sure not a lot has changed in surgery over the years. At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other…
A Review of April 2024 on RonnyAllan.NET

A Review of April 2024 on RonnyAllan.NET

Here is the monthly summary of what we all achieved in April 2024. Something new, something blue and some borrowed too!  Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  Every share spreads awareness and you potentially save someone's life. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. I wish I could do more but there's just little old me!  And Chris too of course for those following my exploits on…
I’m only as good as my last scan

I’m only as good as my last scan

"I'm only as good as my last scan". I once received this comment in response to one of my posts.  I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5-HIAA are clearly useful (for me) but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story…
Happy 10th birthday to my Blog Ronny Allan – Living with Neuroendocrine Cancer (RonnyAllan.NET)

Happy 10th birthday to my Blog Ronny Allan – Living with Neuroendocrine Cancer (RonnyAllan.NET)

On 29th April 2014, I release my first post entitled "What's it all about" i.e. why on earth am I writing a blog! It was simple in those days, I just wanted your money :-)  I was fundraising as many diagnosed cancer patients and their supporters frequently do. In my own case, I was fundraising for my local NET charity who were raising money to support NET patients in various ways.  Their latest challenge at that time was getting access to intraoperatrive radiotherapy machine (IORT), something that could help 'blast' small cells and tumours in places near to the 'operative…
Neuroendocrine – what’s that?

Neuroendocrine – what’s that?

I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?".  Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again! Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and…
The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

But it works, I read it on the internet! “But it works… I read it on the internet!” You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media. Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure…
‘Chinese Dumplings’ and Neuroendocrine Cancer

‘Chinese Dumplings’ and Neuroendocrine Cancer

Update of one of my posts from 2015 which was interesting in that year.  This is not really about a treatment which is available everywhere but was a novel approach by one of the world's most gifted and innovative NET surgeons. Please note this is not a nutrition post! One of my daily alerts brought up this very interesting article published in the Journal of Gastrointestinal Oncology in June 2015.  I personally found it fascinating. Moreover, it gave me some hope that specialists are out there looking for novel treatments to help with the difficult fight against Neuroendocrine Cancer.This is an article about…
“An odd disposition of tumours” – less common metastases in Small Intestine and Pancreatic NETs

“An odd disposition of tumours” – less common metastases in Small Intestine and Pancreatic NETs

Every day is a learning day in NET! When I was diagnosed in 2010, my Oncologist sent me for a specialist scan that would help confirm my staging definition and to document anything that might not have shown up on CT.  This was described as an Octreotide Scan (somatostatin receptor scintigraphy) (now mostly replaced by Somatostatin Receptor PET (SSTR PET) e.g. Ga68/Cu64). Lo and behold, the 3 day Octreotide scan lit up some odd places which seemed to be unconnected to my small intestine primary.  I was already stage IV due to the presence of liver metastases and this was…
Chemotherapy for Neuroendocrine Cancer

Chemotherapy for Neuroendocrine Cancer

Edited and checked April 2024 One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a 'standard of care' or first-line treatment, unlike many other cancers. One exception is high grade (Grade 3) where it is very often a first and/or second-line therapy. This is particularly the case with poorly differentiated Neuroendocrine disease, by default labelled as Neuroendocrine Carcinoma (NEC). Many people think Chemotherapy has a short life span due to recent advances in medical science, some citing Immunotherapy as its replacement. However, it's far too early to write off chemotherapy which is still…
Carcinoid vs Neuroendocrine

Carcinoid vs Neuroendocrine

OPINION  - There's a constant debate regarding the validity of the term 'Carcinoid'.  I've posted about this a few times and as far as I know, the debate has been raging for some years.  This post was originally generated in April 2015 (and hasn't changed that much!). EDIT MARCH 2024. There is now a consolidated Endocrine/Neuroendoceine Tumour classification system (Blue Book).  Still in print but you can see a summary of changes by clicking here. This change should provide some leverage to Neuroendocrine committees particularly about what things should be called. EDIT MARCH 2022.  The latest classification system for Lung…
Things are not always how they seem

Things are not always how they seem

Graphic courtesy of SoBadAss.me (Sam Cleasby) In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border.  It was a fantastic experience, and we met some really interesting people on our 6-day journey.  On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I was with Chris and other people were also present, so I kept quiet.  I later discovered this lady was autistic and I was, therefore, relieved I hadn't responded to her initial rudeness. However, it got me thinking about the number of times I had perhaps…
Neuroendocrine Cancer Online Patient Groups: frighteningly good or good at frightening?

Neuroendocrine Cancer Online Patient Groups: frighteningly good or good at frightening?

OPINION When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'. I found it quite 'cliquey' and I should have listened to the initial advice of that fellow patient!  So, I left it after the reigning clique found I didn't…
Colonoscopy Comedy

Colonoscopy Comedy

Last year I wrote a series of articles on the 'coping' side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I've had, I sometimes have a little laugh even although I wasn't laughing at the time! My favourite 'treatment laugh' is the 'suppository story' which occurred in hospital shortly after my first major surgery - it wasn't funny at the time, but…
Surgery – the gift that keeps on giving

Surgery – the gift that keeps on giving

I first wrote this article in December 2014.  My thoughts went back to my first surgery in 2010 when I was discharged 4 weeks before Christmas.I had been diagnosed with metastatic Neuroendocrine Cancer in July 2010 having been told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking can confer some survival advantage.  Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by…
Piss off cancer, it’s 13 years since my liver surgery!

Piss off cancer, it’s 13 years since my liver surgery!

I'm still here 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 listed on my death certificate.  It’s amazing to think something that would eventually kill me without intervention, didn’t have…
Chocolate – the NET effect

Chocolate – the NET effect

I've always had a 'sweet tooth' and the softer the sweet the better - toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts, 'tablet' and macaroon bars (both from Scotland), are all on my list of favourites.  In terms of desserts, I love those too - ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn't complete without a biscuit (or three....). Don't get me wrong, I'm not stuffing my face with sweet stuff 24/7, however I do need my sugar 'fix' now and then. I'm not a…
A Phase 2 Open Label Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive Neuroendocrine Tumours

A Phase 2 Open Label Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive Neuroendocrine Tumours

A Phase 2 Open Label Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive Neuroendocrine Tumours Update 2nd November 2025 - NANETS output. Efficacy, Safety of 212Pb-DOTAMTATE in PRRT-Naive Patients With GEP-NETsThis is a follow on from the 8th October 2025 update below. Commentary by Dr Mary Maluccio from NOLA NETs.  The figures looks great and you can read it or listen to her talking. Click here for that.   The phase 3 trials will be PRRT niave patients ony (i.e. those who have had no previous PRRT (beta or alpha)). Update 8th October 2025Press Release: AlphaMedixTM…