18 May 2024
By Ronny Allan
30 Comments
Neuroendocrine Neoplasms – not as rare as you think

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , , , , , , , , , , , ,
Update as at 9th June 2026 - see "Meanwhile in Canada ...." sectionUpdate 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…
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17 May 2024
By Ronny Allan
2 Comments
Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Awareness, Patient Advocacy, , , , , ,
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…
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15 May 2024
By Ronny Allan
7 Comments
Carcinoid Syndrome – chicken or egg?

Carcinoid Syndrome – chicken or egg?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , , , , , , , , , ,
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' - my instinct says that is…
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13 May 2024
By Ronny Allan
8 Comments
Neuroendocrine Cancer – a difficult jigsaw

Neuroendocrine Cancer – a difficult jigsaw

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , ,
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…
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12 May 2024
By Ronny Allan
0 Comments
Neuroendocrine Cancer? – 10 early questions to ask your doctor

Neuroendocrine Cancer? – 10 early questions to ask your doctor

Patient Advocacy, , , , , ,
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…
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11 May 2024
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Beware But Be Aware

Neuroendocrine Cancer: Beware But Be Aware

Awareness, , , , , , , , , , , , , ,
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),…
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07 May 2024
By Ronny Allan
16 Comments
“You must be doing OK, you’ve not had chemotherapy”

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

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , , , , ,
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…
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30 Apr 2024
By Ronny Allan
17 Comments
I’m only as good as my last scan

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship, , , , , , , , , , , , , ,
"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 and it emphasises the importance of scans in advanced metastatic cases or those early in their diagnosis. 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…
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21 Apr 2024
By Ronny Allan
9 Comments
Chemotherapy for Neuroendocrine Neoplasms

Chemotherapy for Neuroendocrine Neoplasms

Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , ,
By Ronny Allan – Living with Neuroendocrine Cancer Chemotherapy has a long and complicated history in the management of Neuroendocrine Neoplasms (NENs) (an umbrella term for both Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)).  Unlike many other cancers, most well‑differentiated NETs are relatively resistant to traditional cytotoxic chemotherapy. However, chemotherapy remains an important option for specific subtypes, particularly higher‑grade disease, and certain anatomical sites.  There's a myth that circulates the NET patient groups along the lines of "chemotherapy does not work for NETs". That's not entirely true or at best totally out of context.  However, it's true to say that…
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20 Apr 2024
By Ronny Allan
41 Comments
Carcinoid vs Neuroendocrine

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy, , , , , , , , , , , , , , , , , , , , , ,
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/Neuroendocrine 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 Neuroendocrine Neoplasms…
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23 Mar 2024
By Ronny Allan
32 Comments
The Human Anatomy of Neuroendocrine Cancer

The Human Anatomy of Neuroendocrine Cancer

Awareness, , , , , , , , ,
OPINION.  Sometimes when I'm searching for cancer information, I'm presented with a 'picklist' of types which mostly tend to be anatomy based.  I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be!  Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding. One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or…
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16 Mar 2024
By Ronny Allan
20 Comments
Neuroendocrine Tumours (NET) – benign vs malignant

Neuroendocrine Tumours (NET) – benign vs malignant

Awareness, Patient Advocacy, , , , , , , , , , , , , , ,
Reviewed and Updated 14th March 2026 One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question.  It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET…
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11 Mar 2024
By Ronny Allan
25 Comments
The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

Patient Advocacy, , , , , , , , , , , , , , , , , , , , , , , , ,
Updated 1st April 2026 This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of for Digestive Systems is about to be published.  You may see these important publications called 'Blue Books'. The main changes worth mentioning here is the addition of two new types of Gastric NETs -  Types IV and V, a genetic mutation and PPI related respectively.   A larger update will be added when the publication is available online.   The WHO Classification of Endocrine and Neuroendocrine Tumours Words are very important in NENs To enable…
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11 Dec 2023
By Ronny Allan
0 Comments
Neuroendocrine Neoplasms – very often there are no perfect answers

Neuroendocrine Neoplasms – very often there are no perfect answers

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , ,
If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............".  The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements.  This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. This represents a challenge for regular healthcare professionals but also for Neuroendocrine Neoplasm specialists who are answering many questions asked by patients and their loved ones on a daily basis.  I very much suspect this challenge is the same for many types…
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29 Nov 2023
By Ronny Allan
0 Comments
European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Digestive Neuroendocrine Carcinoma

European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Digestive Neuroendocrine Carcinoma

Latest ENETS Guidelines, , ,
This ENETS guidance paper, developed by a multidisciplinary working group, provides up-to-date and practical advice on the diagnosis and management of digestive neuroendocrine carcinoma, based on recent developments and study results. These recommendations aim to pave the road for more standardized care for our patients resulting in improved outcomes. However, it's true to say that the prognosis for differentiated Neuroendocrine Carcinomas (NEC) is generally poorer than the less aggressive Neuroendocrine Tumours (NET). Surgery can be of benefit for localized disease after extensive preoperative imaging. Carboplatin in combination with etoposide is recommended as first-line treatment for metastatic disease. Irinotecan with fluoropyrimidines…
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26 Oct 2023
By Ronny Allan
2 Comments
Every Day is World Neuroendocrine Cancer Day!

Every Day is World Neuroendocrine Cancer Day!

Awareness, Patient Advocacy, , , , ,
Opinion: In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me.  Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery.  Read about this here - I even woke up on November 10th after major surgery. You'll note the title of this post is "World Neuroendocrine Cancer Day" and that is because (so called) "NET Cancer Day" is not good awareness (ignore the grammar too). It's a terrible joining of cancer words and…
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27 Sep 2023
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Question, Clarify, Confirm

Neuroendocrine Cancer: Question, Clarify, Confirm

Patient Advocacy, , , , , , ,
One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not.  And I don't always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date. I attempted to pin this down in my much read "10 questions to ask your specialist"…
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03 Sep 2023
By Ronny Allan
0 Comments
Jimmy Buffett 1946-2023 – Neuroendocrine Carcinoma (Merkel Cell Carcinoma)

Jimmy Buffett 1946-2023 – Neuroendocrine Carcinoma (Merkel Cell Carcinoma)

Awareness, ,
US singer-songwriter Jimmy Buffett, best known for his 1970's hit Margaritaville, died aged 76. "Jimmy passed away peacefully on the night of September 1 2023 surrounded by his family, friends, music and dogs," said a statement on his website. Picture credit jimmybuffett.com The cause of death has been given as Merkel Cell Carcinoma, a type of Neuroendocrine Carcinoma of the skin. Read more about Merkel Cell Carcinoma on Dana Farber - click here Many people in US and elsewhere will have heard of Jimmy and love his music.  I vividly remember going into the Jimmy Buffett's Margaritaville in Universal Orlando…
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28 Aug 2023
By Ronny Allan
1 Comment
Neuroendocrine Cancer – normally slow but don’t be tricked!

Neuroendocrine Cancer – normally slow but don’t be tricked!

Awareness, , , , , , , , , , ,
An awareness post from Ronny Allan. There are a lot of scary diseases in this world but some of them are particularly sneaky.  One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. Don't be fooled, it's the great pretender. 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…
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01 Jun 2023
By Ronny Allan
2 Comments
Clinical Trial: Phase 1/2a Study of 23ME-00610 in Patients With Advanced Solid Malignancies (incl Neuroendocrine Neoplasms)

Clinical Trial: Phase 1/2a Study of 23ME-00610 in Patients With Advanced Solid Malignancies (incl Neuroendocrine Neoplasms)

Clinical Trials and Research, , , , ,
Updated 13th November 2024Glad you found this interesting blog.  However, I must warn you that it is in jeopardy due to the following announcement intercepted by my google agents. Read more by clicking here.I will monitor this for further information and update as necessary. Who are 23andMe?I personally had not heard of 23andMe but many people in North America might have.  When you first look at what they do, you can be excused for thinking they are just another 'Ancestry' company, but they are more than that. They also get involved in genetics and health.  To quote their marketing "we’re all of…
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01 Apr 2023
By Ronny Allan
0 Comments
RonnyAllan.NET – Summary of March 2023 – Ronny Allan – Living with Neuroendocrine Cancer

RonnyAllan.NET – Summary of March 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient Advocacy, , , , , , ,
Summary -  Many thanks for supporting my social media in March.  I remain keen to hear any suggestions of the sort of thing you would like me to research and publish.  I am working on two or three more blog posts due to come in in the next 10 days, please stay tuned. The top 10 most-read posts in March are listed below: Tribute to the life and legacy of Miranda Filmer A story of strength and inspiration in the most trying of circumstances.  Miranda and her parents are determined to help others despite the loss of Miranda.  Click here…
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22 Feb 2023
By Ronny Allan
2 Comments
A spotlight on Gastric Neuroendocrine Neoplasms (based on 2026 WHO Classification)

A spotlight on Gastric Neuroendocrine Neoplasms (based on 2026 WHO Classification)

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, Treatment, , , , , , , , , ,
What are Gastric NENs Unlike other anatomical types, the word Gastric is used to indicate a tumour (NET) or carcinoma (NEC) in the stomach.  The stomach lies at the bottom of your oesophagus and connects to the first part of the small intestine (the duodenum).  Clearly a key part of the gastrointestinal system, it processes food on its journey downwards. The stomach produces strong acid. This kills many microorganisms that might have been swallowed along with the food. It also contains special chemicals called enzymes. These are important for breaking down the food so it can be absorbed by the…
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02 Feb 2023
By Ronny Allan
0 Comments
RonnyAllan.NET – Summary of January 2023 – Ronny Allan – Living with Neuroendocrine Cancer

RonnyAllan.NET – Summary of January 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient Advocacy, , , , , , ,
SummaryGreat start to 2023 and I thank those who continue to support my social media and this blog.  I'm keen to hear any suggestions of the sort of thing you would like me to research and publish.The top 10 most-read posts in January are listed below:Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patientThe Masters Snooker competition was held in January 2023 and there was a tremendous spike in views at the time of the final. The Masters Trophy was named the Paul Hunter trophy, and this incidentally generates a vast amount of awareness for Neuroendocrine Cancer as most…
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03 Jan 2023
By Ronny Allan
2 Comments
RonnyAllan.NET – a review of 2022

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Review In 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost.  It takes 3-4 years to get a million hits based on current performance.  To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened!  I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth.  2020 and 2021 were slower than normal but 2022 has seen some pickup.  Some of it is due to less writing…
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14 Sep 2022
By Ronny Allan
0 Comments
Clinical Trials – Targeted Alpha-Emitter PRRT RYZ101/RYZ401

Clinical Trials – Targeted Alpha-Emitter PRRT RYZ101/RYZ401

Clinical Trials and Research, , , , , , , , ,
Update – 1 April 2026 RYZ401: New Alpha‑Emitter Trial (PRRT‑Naïve Only) In January 2026, RayzeBio (now part of Bristol Myers Squibb) opened a new first‑in‑human trial for RYZ401, titled “Study of RYZ401 in Subjects With Solid Tumors Expressing SSTRs” (NCT07165132). This Phase 1/2 study aims to: determine the recommended Phase 2 dose (RP2D) define the optimal treatment schedule assess safety and tolerability evaluate early signs of efficacy The trial includes NETs and other SSTR‑expressing solid tumours, including meningioma. Important: RYZ401 excludes anyone who has ever received PRRT (Lu‑177 or Y‑90). This makes it a PRRT‑naïve trial. 1 April 2026: The…
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08 Jun 2022
By Ronny Allan
0 Comments
Clinical Trial: Dostarlimab, anti–PD-1 monoclonal antibody in Neuroendocrine Carcinoma

Clinical Trial: Dostarlimab, anti–PD-1 monoclonal antibody in Neuroendocrine Carcinoma

Clinical Trials and Research, Treatment, , , , ,
BackgroundFollowing the Americal Society of Clinical Oncology (ASCO) conference in June 2022 (ASCO is the biggest Oncology event in the world), the media widely featured the results of the Phase 2 clinical trial of the drug Dostarlimab, an anti–PD-1 monoclonal antibody. The media often looks for headline-grabbing stories and this was one of them.  One UK TV outlet said they may have found the cure for cancer, which is a reckless statement when you look at the size and boundary of the clinical trial referenced.  The detail is, that this was a phase 2 trial for "rectal adenocarcinoma", but specifically…
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08 Apr 2022
By Ronny Allan
1 Comment
My illness may be invisible, but I am not

My illness may be invisible, but I am not

Awareness, Living with Neuroendocrine Cancer, Survivorship, , , , , , , , , ,
The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years…
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03 Mar 2022
By Ronny Allan
0 Comments
A Spotlight on Lung Neuroendocrine Neoplasms

A Spotlight on Lung Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, , , , , , , , , , ,
Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment.  Lung Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here.  Always discuss your own situation, test results, and treatment options with your specialist team, including your thoracic, oncology, endocrine, or NET multidisciplinary team (MDT).  If you have concerns about symptoms, progression, or treatment decisions, please seek guidance from your clinical team without delay.   This 2026 updated spotlight summarises the latest understanding of Lung Neuroendocrine Neoplasms (NENs), including terminology,…
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11 Sep 2021
By Ronny Allan
0 Comments
Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Background.  For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors.  There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes!  Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com)…
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23 Dec 2020
By Ronny Allan
2 Comments
Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Clinical Trials and Research, Patient Advocacy, , , , , , , ,
It's estimated that around 5-10% of Neuroendocrine Neoplasms (NENs) have an unknown primary - what that means is cancer cells have been found in the body but the place cancer began remains unknown.  I wrote about this issue in more depth in my article "Needle in a haystack" - you can read that here.  In that article, you will note that NET specialists through their knowledge and understanding of the behaviour of these comped tumours, can often drill down and gather various pieces of evidence to help narrow down the primary location. However, this new study would indicate they could…
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09 Oct 2020
By Ronny Allan
5 Comments
Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patient

Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patient

Awareness, Inspiration,
Paul Hunter, three-time Masters snooker champion was just 27 when he fell victim to Neuroendocrine Cancer at the peak of his powers and popularity. At just 25, he'd won the third Masters title, a feat which, at the time, had been achieved by only two other players in the world. He was dubbed the "Beckham of the Baize" because of his chiselled good looks and long, blond hair (a reference to famous footballer David Beckham). The Masters Trophy is one of the prestigious titles in the international snooker world and it was a belated honour that the trophy was renamed…
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25 Feb 2020
By Ronny Allan
1 Comment
Clinical Trial: Lu-177 DOTATOC (PRRT) in adult subjects with Somatostatin receptor (SSTR) positive Pulmonary, Pheochromocytoma, Paraganglioma,  Unknown primary, and Thymic Neuroendocrine Tumors

Clinical Trial: Lu-177 DOTATOC (PRRT) in adult subjects with Somatostatin receptor (SSTR) positive Pulmonary, Pheochromocytoma, Paraganglioma,  Unknown primary, and Thymic Neuroendocrine Tumors

Clinical Trials and Research, , , , , , , , , ,
Excellent news for those who don't have Gastroenteropancreatic NETs (GEP-NETs). A trial of PRRT is being set-up for the less common types of NET including those with an unknown primary.  Using the DOTATOC radionuclide rather than the Lutathera model of using DOTATATE, this trial will cater for Pulmonary, Pheochromoctyoma, Paraganlioma, Unknown Primary and Thymic Neuroendocrine Tumours.Excel Diagnostics and Nuclear Oncology Center (EDNOC) announced today that its physician sponsored Investigational New Drug (IND) application to evaluate safety and efficacy of Lu-177 DOTATOC in adult subjects with Somatostatin receptor (SSTR)  expressing Pulmonary, Pheochromocytoma, Paraganglioma, Unknown primary, and Thymic Neuroendocrine Tumors (PUT-NET),  has…
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30 Dec 2019
By Ronny Allan
0 Comments
Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Awareness, , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email sharing this could help someone 2019 has been quite a year and my blog views are the highest they have ever been.  They could have been even higher had I written more articles instead of resting on my laurels after reaching ONE MILLON total views in June of this year.  Will try harder in 2020! (edit - COVID changed those plans)Things are so hectic I might need to think about more resources for my website/blog going forward.  Much of the…
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09 Nov 2019
By Ronny Allan
3 Comments
“Please find something wrong with me”

“Please find something wrong with me”

Awareness, Patient Advocacy, , , , , , , , ,
I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common…
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31 Oct 2019
By Ronny Allan
9 Comments
Neuroendocrine Cancer: Double, Double Toil and Trouble

Neuroendocrine Cancer: Double, Double Toil and Trouble

Awareness, , , , , , , , , , ,
Double Neuroendocrine Cancer is a complex and difficult disease to diagnose, many people struggle with symptoms for some time before they are formally diagnosed.  Some continue to struggle after diagnosis. There are many facets that can confound a physician - at diagnosis and beyond. Double Toil If it's not enough just to have tumours growing inside your body, this cancer can also be uncannily quiet delaying diagnosis.  At the same time, the tumours can still be 'functional' and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart…
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12 Oct 2019
By Ronny Allan
3 Comments
The Flu shot – it’s not just about you

The Flu shot – it’s not just about you

Patient Advocacy, Survivorship, , , ,
An Opinion Post Edit:  October 2024.  I continue to believe the flu shot is even more important in the era of COVID-19. The flu is an illness that typically spreads in autumn and winter. A major flu outbreak could potentially overwhelm a person who might contract both at once or overlap. In fact, in Dec 2023 after contracting my second infection of COVID-19, I had a back to back regular chest infection needing antibiotics.  OK, I still succumbed to both even after having both shots in that year, but who knows what would have happened without them. Like last year, I…
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18 Jul 2019
By Ronny Allan
5 Comments
Pancreatic Neuroendocrine Tumours – to cut or not to cut

Pancreatic Neuroendocrine Tumours – to cut or not to cut

Treatment, , , , , , , , , , , , ,
Background I've written before about pancreatic NETs (pNETs), much of which has been on the awareness side of my advocacy work, particularly emphasising the differences with core Pancreatic Cancer (adenocarcinoma).Pancreatic NETs are quite difficult to diagnose and treat, some of that difficulty is due to the location of the pancreas and accessibility for surgeons and radiographers. It's not helped by the fact that most pNETs are non-functional, making diagnosis more difficult as there is little clinical suspicion to scan, but also results in more late diagnoses.Although biopsies are possible, mainly via endoscopic ultrasound or laparoscopy, they can still be difficult to…
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14 Jan 2019
By Ronny Allan
0 Comments
Clinical Trial SPARTALIZUMAB – Immunotherapy for Neuroendocrine Neoplasms (PDR001)

Clinical Trial SPARTALIZUMAB – Immunotherapy for Neuroendocrine Neoplasms (PDR001)

Clinical Trials and Research, Treatment, , , , , ,
UpdateTrial complete.  Conclusion abstract - Single agent PD-1/PD-L1 inhibitors have not demonstrated clinical utility in an unselected NET population and should not be used outside of clinical trials. The potential for PD-L1 inhibition in the thoracic cohort warrants further investigation.  Read more here. PDR001 (anti-PD-1) is an investigational immunotherapy being developed by Novartis to treat both solid tumors and lymphomas (cancers of the blood).  It is currently being trialled on many cancers including Neuroendocrine.  Its brand name is SPARTLIZUMAB.How PDR001 worksPDR001 is a type of immunotherapy, meaning that it acts by activating the body’s own immune system to recognize and fight…
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03 Jan 2019
By Ronny Allan
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Breath test with the goal of detecting multiple cancers – ready to start trials

Breath test with the goal of detecting multiple cancers – ready to start trials

Clinical Trials and Research, , , , ,
While it's a long way off becoming reality, this is quite an exciting clinical trial. I have no idea if it will pick up Neuroendocrine disease but initially, patients with suspected oesophageal and stomach cancers will be asked to try the test. Later it will be extended to include prostate, kidney, bladder, liver and pancreatic cancers. It's possible that Neuroendcorine tumours in these locations might be picked up or at least show up some abnormality that triggers further checks. The fact that Cancer Research UK is involved gives me some confidence as they tend to back the strong horses. I…
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30 Nov 2018
By Ronny Allan
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RonnyAllan.NET – Community Newsletter Covering November 2018

RonnyAllan.NET – Community Newsletter Covering November 2018

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Summary for November 2018 NET News 1. I supported the annual NET Cancer Day event in my own style, contributing SIGNIFICANTLY to both Facebook and Twitter social media platforms.  My twitter accounts were the biggest contributors to the #LETsTalkAboutNETs and #NeuroendocrineCancer hashtags for several days straddling the 10th Nov and between this and my Facebook account, I accounted for a significant proportion of the data recently published by INCA.   I almost got to my 1 million 'reach' on twitter in ONE WEEK straddling NET Cancer Day (see below) - just a wee Scottish guy with a less common disease and…
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21 Nov 2018
By Ronny Allan
10 Comments
Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , ,
I have a lot to be thankful for The points below are awareness and should not be confused with pity parties (I don't do those) No thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what…
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01 Nov 2018
By Ronny Allan
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RonnyAllan.NET – Community Newsletter Covering October 2018

RonnyAllan.NET – Community Newsletter Covering October 2018

Newsletters, , , , ,
Summary for October 2018 NET News Several headlines covering the past month: 1. The annual NANETS symposium took place last month and I constructed an article of several important outputs.  One day I might make it there, been to ENETS twice.  Would love to attend UKINETS but they don't seem very 'patient' friendly. 2. I spoke alongside IPSEN Pharma SAS (Global HQ) at the annual Eye for Pharma Patient Summit. It was an honour and a privilege to stand in front of 200 people to tell my personal story plus my involvement in LivingWithNETs.com.  The audience was a mix of…
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01 Oct 2018
By Ronny Allan
1 Comment
RonnyAllan.NET – Community Newsletter Covering September 2018

RonnyAllan.NET – Community Newsletter Covering September 2018

Newsletters, , , , ,
Summary for September 2018 NET News Several headlines covering the past month: 1. The annual NANETS symposium kicks off in a few days. I'm hoping to bring you news from the event (remotely, I won't be there) and perhaps a summary in next month's newsletter. 2. The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I've actually been ahead of the game for over a year since I found out this was coming and it's reflected in my 18 month old post on Staging and Grading.…
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31 Aug 2018
By Ronny Allan
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RonnyAllan.NET – Community Newsletter Covering August 2018

RonnyAllan.NET – Community Newsletter Covering August 2018

Newsletters, , , , ,
Summary for August 2018 NET News Several headlines covering the past month: 1. The death of Aretha Franklin was a shock to her many fans around the world, including myself. I had no idea she was a Neuroendocrine Cancer patient. However, it would appear her death is being assigned as 'Pancreatic Cancer' mainly due to a rather clumsy statement from her physician. Despite the fact that her death certificate specifically confirms Neuroendocrine Cancer, we will be fighting a hard battle for years to come. The same thing happened with Steve Jobs, although I suspect we have now won that battle…
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30 Jul 2018
By Ronny Allan
8 Comments
RonnyAllan.NET – Community Newsletter JULY 2018

RonnyAllan.NET – Community Newsletter JULY 2018

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Summary for July Personal News  Another unusual month, after a bizarre June.  The chest infection has gone but still awaiting results of an x-ray to confirm.  July was supposed to be partly holiday but that was cancelled due to illness.  The chest infection caused a 4kg weight loss and only half of this has returned to date.  I also got the results of my first ever Ga68 PET Scan and this resulted in an article below. No longer a boring stable patient but nothing that needs doing imminently. Many thanks to all the messages which continue to arrive both public…
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02 Jul 2018
By Ronny Allan
5 Comments
RonnyAllan.NET – Community Newsletter JUNE 2018

RonnyAllan.NET – Community Newsletter JUNE 2018

Newsletters, , , , ,
Summary for June For the first time in 3 years, I didn't write any new articles in a single month (other than the monthly newsletter).  This was due to a prolonged chest infection from which I'm still recovering.  I'm so much better now (thankfully) but I suspect recovery has been slightly hampered by the recent UK heatwave. I managed a relaxing short break on the south coast of England to make up for my cancelled 3 week road trip to Scotland  My weight remains below 10 stone, the lightest I have been for over 30 years. For me, weight loss…
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07 Jun 2018
By Ronny Allan
5 Comments
RonnyAllan.NET – Community Newsletter May 2018

RonnyAllan.NET – Community Newsletter May 2018

Newsletters, , , , ,
  Summary for May Different type of intro to my newsletter as it's late due to unexpected illness.  In some ways, what happened in May is possibly connected.  I had quite a bit of work to do for a 'Patients Included' event in May in Berlin.  I managed to meet the deadlines and admit I was slightly out of my comfort zone. That said, it was a success and I managed an amazing amount of new contacts and awareness for Neuroendocrine Cancer.  I arrived back exhausted and turned my attention to another two things - a patient presentation to the…
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30 Apr 2018
By Ronny Allan
9 Comments
RonnyAllan.NET – Community Newsletter April 2018

RonnyAllan.NET – Community Newsletter April 2018

Newsletters, , , , ,
Headlines 1.  Patients Included.  I'm a big believer that patients should be included in all aspects of healthcare and I can very much relate to any initiative that promotes this. I'm therefore pleased to have been listed as a Patients Included accredited site providing further  EXTERNAL awareness opportunities - read about this here.  2. I've accepted an appointment to the Strategic Advisory Board on MultiMed Inc, the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) - It also publishes a magazine called Current Oncology which is Medline listed. This is not…
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11 Apr 2018
By Ronny Allan
3 Comments
Sapanisertib – a drug on trial for Neuroendocrine Tumors (NET) with a pancreatic primary

Sapanisertib – a drug on trial for Neuroendocrine Tumors (NET) with a pancreatic primary

Clinical Trials and Research, Treatment, , , , , , , , , , ,
Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body. What is Sapanisertib? Sapanisertib is one of a group of targeted therapy drugs that interferes with tumor progression by inhibiting an enzyme known as mTOR which a tumor cell needs for growth.  In fact this is the same technique used in Afinitor (Everolimus), already approved for NETs. It is also being tested in a number of different advanced cancers, including bladder, kidney, breast,…
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03 Apr 2018
By Ronny Allan
2 Comments
RonnyAllan.NET – Community Newsletter March 2018

RonnyAllan.NET – Community Newsletter March 2018

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Headline for the period of March 2018 is reaching a milestone of half a million blog views.  Yay ...... Read more here. Amazing that I clicked over the 500,000 mark in a taxi going from Barcelona airport to my hotel for ENETS 2018 where I'd been sponsored by INCA.  Fortunately I had prepared the post earlier and was able to spread the news in a few clicks.  I picked up some great information at this conference which I'm feeding into my articles so you get the best and latest thinking.  Here's a couple of pictures of me with famous NET specialists. …
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