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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21 Dec 2023
By Ronny Allan
5 Comments
Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome

Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome

Clinical Trials and Research, , , , , , , , , , , , ,
What is Paltusotine Paltusotine is the first oral, once-daily, selectively targeted somatostatin receptor type 2 (SST2) agonist being developed for the treatment of acromegaly and carcinoid syndrome. The method of operation appears to be similar in that it wants to bind to somatostatin receptor 2 (SST2).  In the meantime, see short video and note that the drug for Acromegaly is more advanced in pipeline terms (now in Phase 3). In terms of the effect on NETs, these tumours typically over express SST2, somatostatin type 2 receptors. Both SST2 and 3 are involved in apoptosis of neuroendocrine tumour cells.” Paltusotine’s high level…
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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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20 Nov 2023
By Ronny Allan
0 Comments
Neuroendocrine Cancer – Clinical Esoterica

Neuroendocrine Cancer – Clinical Esoterica

Awareness, , , , , , , , , , , , , , , , , , , , , ,
  One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people.  As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer.  Some continue to struggle after.  Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma.   In addition to common symptoms of flushing and diarrhea, others include…
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09 Nov 2023
By Ronny Allan
6 Comments
Piss off Cancer, it’s been 13 years since my “big surgery”

Piss off Cancer, it’s been 13 years since my “big surgery”

Awareness, Inspiration, , , , , , ,
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,…
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08 Nov 2023
By Ronny Allan
0 Comments
When Should Genetic Testing Be Performed in Patients With Neuroendocrine Tumors?

When Should Genetic Testing Be Performed in Patients With Neuroendocrine Tumors?

Patient Advocacy,
Another episode in the expert opinion series.  I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jennifer Eads talks about the tricky issue of when Genetic Testing Be Performed in Patients with Neuroendocrine Tumors? Jennifer R. Eads, MD Associate Professor of Clinical MedicinePhysician Lead, GI Clinical ResearchDirector, National Clinical Trials NetworkDirector, Penn Neuroendocrine Tumor ProgramDivision of Hematology and OncologyUniversity of Pennsylvania, Abramson Cancer CenterPerelman Center for Advanced Medicine Philadelphia, PA The discussion is centred on…
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02 Nov 2023
By Ronny Allan
0 Comments
Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

Patient Advocacy, Treatment, ,
I thought this series might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too.  Jonathan Strosberg MD from Moffitt Cancer Center FloridaJennifer Eads MD from University of Pennsylvania, Abramson Cancer CenterThorvadur R. Halfdanarson MD from Mayo RochesterThe discussion is centred on numerous scenarios, and I'll list them all below. What are some of the recent developments in the treatment of NETs and carcinoid syndrome, and what might be on the horizon?The first oneSomatostatin analogues (SSAs) are a therapeutic mainstay for the treatment…
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21 Oct 2023
By Ronny Allan
1 Comment
The right awareness can lead to speedier diagnoses and save lives

The right awareness can lead to speedier diagnoses and save lives

Awareness, Living with Neuroendocrine Cancer, Treatment, , , , , , ,
ORIGINAL POST 20th May 2014.  Refreshed 25th March 2026 I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away.  I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog.  I'm thinking the top viewing score to date is not because it mentioned…
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15 Oct 2023
By Ronny Allan
11 Comments
Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

Awareness, , , , , ,
Share this post please An awareness post from Ronny Allan The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned.  However, some cancers are in the 'difficult to diagnose' category.  Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays.  In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! In some cases, it can be a little bit noisy. For example, some…
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04 Oct 2023
By Ronny Allan
7 Comments
My right-hand woman – Chris

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship, Travel with Ronny, , , ,
There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was in 2010-2014 but I have a lot of people to thank for some excellent progress.…
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03 Oct 2023
By Ronny Allan
1 Comment
Who needs a gallbladder anyway?

Who needs a gallbladder anyway?

Diet and Nutrition, Treatment, , , , , , , , ,
We can survive without a gallbladder, but clearly it is a useful, functioning organ, and we are better off to keep it if we can. There are times when things can go wrong such as gallstones, sludge and blocked ducts, and then it may need to be removed. However……even though there wasn’t really anything wrong with my gallbladder in 2010/2011, I was convinced it had to go.For info, gallstones incidence in the general population makes it considerably more common than NETs so it follows that some NET patients will have a gallstone issue totally unrelated to their NET.  Gallstones are…
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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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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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27 Aug 2023
By Ronny Allan
15 Comments
Diagnosis – I’m no longer in control

Diagnosis – I’m no longer in control

Awareness, Survivorship, , , ,
Diagnosis The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my General Practitioner (GP), referred to a specialist, had a bunch of tests, and now referred to an Oncologist.  There were many hints along the way, but it did not reduce the out of body experience I was having that day.  This happens to other people but not me. I felt in control Rewind 2 months to May 2010......  I was happily working, getting stuff done, making things work. I had sufficient autonomy…
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05 Aug 2023
By Ronny Allan
2 Comments
The Cancer Legacy of Steve Jobs?

The Cancer Legacy of Steve Jobs?

Awareness, Clinical Trials and Research, , ,
Update February 2026. Today, Yosemite said that it had raised more than $200 million for a second fund that has a total targeted size of $350 million, with heavy-hitter investors that include biotech giant Amgen, Memorial Sloan Kettering, MIT and venture capitalist John Doerr. Powell Jobs (Steve's wife) invested in the fund through Emerson; as a general partner, Jobs is also personally invested.  Read more click here.  Original story Just about everyone knows who Steve Jobs is but not many people have heard of Reed Jobs.  Clearly a relative and is actually his son.  Now aged 31, he wants to get…
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26 Jul 2023
By Ronny Allan
4 Comments
13 years – I’m still here!

13 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
I finally made 13 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 48 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…
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24 Jul 2023
By Ronny Allan
2 Comments
Sometimes you gotta climb that hill, even if you get wet!

Sometimes you gotta climb that hill, even if you get wet!

Inspiration, Patient Advocacy, Survivorship, ,
Sometimes you gotta climb that hill, even if you get wet is another metaphor post. Earlier this month in July 2023, Chris and I set off to climb a hill on Dartmoor.  The weather was unpredictable, and we anticipated getting wet alongside the physical effort needed to climb Cox Tor.  We spent an hour steadily climbing up an approach path just to get to the base of Cox Tor and it had already rained twice at this point.  The clouds were moving fast over our heads, dropping their rain each time.  We still had to climb to the top and it…
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04 Jul 2023
By Ronny Allan
2 Comments
Joaquin Castro – US Congressman and NET patient

Joaquin Castro – US Congressman and NET patient

Awareness, ,
Who is Joaquin Castro?  I have an international following so many people outside of USA may not know much about Joaquin Castro.  He is an American lawyer and Democratic politician who has represented Texas's 20th congressional district in the United States House of Representatives since 2013. The district includes just over half of his native San Antonio. He was diagnosed with a Small Intestine NET in July 2022 after an incidental finding while he was working in Spain.  His car hit a boar on a highway the night before he was due to fly home to the US.  He was…
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03 May 2023
By Ronny Allan
3 Comments
Repeat after me: Maria Menounos has Neuroendocrine Cancer

Repeat after me: Maria Menounos has Neuroendocrine Cancer

Awareness, ,
Like many people from outside USA, I don't really know anything about Maria Menounos.  For those in the same boat, let me confirm she is a very well-known personality in USA.  A journalist, television presenter and actress. She has hosted Extra and E! News; she was a TV correspondent for Today, Access Hollywood, and co-hosted the Eurovision Song Contest 2006 in Athens, Greece. She also co-created and is currently CEO of online podcast series network AfterBuzz TV. She is currently signed to WWE where she has served as an ambassador since 2013. She hosts the podcast 'Conversations with Maria Menounos'.…
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28 Apr 2023
By Ronny Allan
2 Comments
A spotlight on 5-HIAA

A spotlight on 5-HIAA

A Spotlight on NENs - Testing Series, Patient Advocacy, , , , , , , , , , ,
Background. It's important to note that not every type of Neuroendocrine Neoplasm will get the same tests due to the heterogenous nature of this cancer type. Some are more specific than others.  A wide range of tests may be necessary at diagnosis if the type of NET is not clear.  This post will cover one of the main tests to check for a common type of Neuroendocrine Tumour (NET) that is known to secrete excess amounts of the hormone Serotonin leading to symptoms indicative of Carcinoid Syndrome.  These tumours are often labelled using the antiquated and misnomer term ‘Carcinoid Tumour’ but…
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24 Apr 2023
By Ronny Allan
5 Comments
The NET Detectives

The NET Detectives

Awareness, Patient Advocacy, , , , , , , , , , , , ,
The NET Detectives is an awareness post. Detecting NETs In general, it's probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary.  In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don't have a range of imaging devices on site, referrals are often necessary to investigate more.  I don't believe it's right to say this referral is a misdiagnosis, it's just another stage in…
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16 Apr 2023
By Ronny Allan
3 Comments
Neuroendocrine Cancer: looks can be deceiving

Neuroendocrine Cancer: looks can be deceiving

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , ,
Is this the face of a cancer patient? Yes, it is actually.  This photo was taken on 31st October 2010.   Three months prior, on 26 July 2010, Ronny Allan was diagnosed with metastatic Neuroendocrine Cancer, a small intestine primary, extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas, retroperitoneal fibrosis, some suspect areas above the diaphragm and multiple liver metastases.  Twelve (12) days prior to this photo, Ronny had a liver embolization which resulted in a week's recuperation plus pain. Nine days after this photo was taken, Ronny had his first major surgery spending 18 days in hospital. …
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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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16 Mar 2023
By Ronny Allan
0 Comments
Experimental drug for Gastric NET – Netazepide

Experimental drug for Gastric NET – Netazepide

Clinical Trials and Research, Treatment, , , , ,
Update Apr 2026.  Nothing has been published about this trial for some years.  I spoke to a leading UK Gastroenterologist who thinks it has been quietly dropped.  I will keep this blog open for a year or more just in case anything crops up.  Gastric NETs When I wrote my post entitled "Spotlight on Gastric Neuroendocrine Neoplasms", I explained what these were with some emphasis on the association with hypergastrinemia (elevated fasting serum gastrin levels) with Type 1 and 2 gNETs being differentiated by the settings in which this occurs.  This oversecretion is not the same as so called carcinoid…
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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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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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08 Dec 2022
By Ronny Allan
0 Comments
Lanreotide Ipsen: 13 more years

Lanreotide Ipsen: 13 more years

Inspiration, Survivorship, Treatment, , , , ,
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). I once wrote a blog entitled "Four more years".  I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times).  As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views.  I can tell you…
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17 Oct 2022
By Ronny Allan
0 Comments
Evolving Approaches in the Management of Neuroendocrine Tumor-Associated Carcinoid Syndrome

Evolving Approaches in the Management of Neuroendocrine Tumor-Associated Carcinoid Syndrome

Patient Advocacy, Treatment, , ,
Introduction I found these 10 short video series from OncLive very useful. Each video ranges from 2 - 5 minutes long and is very easy to watch and digest. Not only a succinct primer on (so-called) carcinoid syndrome but also an update on the evolving approaches. And the series also includes information on Hedinger Syndrome (carcinoid heart disease) which can be caused by the effects of this syndrome. The panel includes some 'big hitter' names in our scientific community including: Satya (Nanu) Das, MD, MSCI (Oncologist) Jerome Zacks, MD (Cardiologist) Rodney Pommier, MD (Surgeon) Video list (click on the blue…
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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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01 Sep 2022
By Ronny Allan
0 Comments
Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Clinical Trials and Research, Treatment, ,
One of the most controversial subjects in Neuroendocrine Neoplasms is the management of small non-functional (asymptomatic) pancreatic NETs (NF-PanNEN).  In the most general terms, surgery is not recommended in tumours less than 2cm.  Allowances are made for those who are functional (i.e. symptomatic with one of several syndrome possibilities) or where the tumour is threatening important vessels (i.e. pre-emptive surgery).  Normally watching and waiting is recommended.  I wrote more detail in an earlier blog - Pancreatic Neuroendocrine Tumours - to cut or not to cut Some patients opt (or push for) a non-guideline surgery regardless and as one other patient…
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26 Jul 2022
By Ronny Allan
14 Comments
12 years – I’m still here!

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
I finally made 12 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 47 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…
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20 Jan 2022
By Ronny Allan
3 Comments
External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

Patient Advocacy, Treatment, , , , ,
Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of candidates and predictions on who will benefit most are still not an exact science (....and possibly never will be).  Neuroendocrine Neoplasms are a heterogenous grouping of cancers, and heterogeneity also includes (but is not limited to) age, stage, gender, functional/non-functional, and pre-existing condition constraints. All of this complicates the task of therapeutic decision-making and sequencing. The attached cohort study aims to bound the issue and describe a method of allocating a Clinical Score (CS) to…
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09 Jan 2022
By Ronny Allan
0 Comments
Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trials and Research, Patient Advocacy, Treatment, , , , ,
What is the aim of this clinical trial?The aim of this single location trial in Imperial College London is to determine whether pre-treatment with ASTX727 results in re-expression of SSTR2 in patients with metastatic NETs, using 68Ga-DOTA-TATE to image epigenetic modification of the SSTR2 locus allowing subsequent treatment with Lutathera(i.e. PRRT).  Patients entered into the study will receive ASTX727 orally up to 3 to 8 days prior to receiving Lutathera treatment. What is ASTX727?Oral Decitabine and Cedazuridine (ASTX727) is a DNA methyltransferase (DNMT) inhibitor currently being used in a trial to facilitate oral treatment of certain drugs for adults with intermediate…
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20 Nov 2021
By Ronny Allan
2 Comments
20th November 2010 – feeling perkier

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment, , , , , , , , , ,
Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications.  At that point, I had been keeping my diagnosis within close family and friends and my manager at work.  People at work and my wider list of friends were probably wondering what was going on with me.  Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up.  To be honest, the first…
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17 Oct 2021
By Ronny Allan
0 Comments
In the land of small tumours, there is still a lot of work to do!

In the land of small tumours, there is still a lot of work to do!

Awareness, Clinical Trials and Research, Patient Advocacy, Treatment, ,
I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1).  He always delivers with "enthusiastic vigour", a term he reduces to "brio" (which I had to google!)His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors".  He quotes from a…
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02 Oct 2021
By Ronny Allan
1 Comment
The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, Survivorship, , ,
I see a lot of emotional and anxiety issues in my private group.  I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population.  Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it.  I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients.  February 2020 - boom!  Add in a global…
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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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02 Sep 2021
By Ronny Allan
6 Comments
In the early days, I thought I was going to die

In the early days, I thought I was going to die

Inspiration, Patient Advocacy, Survivorship, , , , , , ,
Opinion.  It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability.   BUT there is also the thought of dying of cancer.  I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65.  I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger…
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26 Jul 2021
By Ronny Allan
7 Comments
11 years – I’m still here!

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
I finally made 11 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility.  I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in…
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10 May 2021
By Ronny Allan
3 Comments
Clinical Trial: [212Pb]VMT-α-NET Alpha-emitter – Phase 1/2a Clinical Trial

Clinical Trial: [212Pb]VMT-α-NET Alpha-emitter – Phase 1/2a Clinical Trial

Clinical Trials and Research, , , , , ,
Update 21 June 2025. Perspective Therapeutics Commences Recruitment for [212Pb]VMT-α-NET in the Third Dose Escalation Cohort of its Ongoing Phase 1/2a Clinical Trial June 21, 2025 [212Pb]VMT-α-NET Phase 1/2a study is advancing into Cohort 3 with a fixed administered dose that is up to 20% higher (6 mCi) than the dose administered to patients in Cohort 2 Dosimetry sub-study analysis presented at the Society of Nuclear Medicine & Molecular Imaging (SNMMI) 2025 Annual Meeting to advance utility of dosimetry in clinical development when considered with clinical data On track to submit further clinical updates to scientific congresses in 2H 2025,…
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04 Jan 2021
By Ronny Allan
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The Invisibility of Appendiceal and Colorectal NETs – do the math

The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient Advocacy, , , , , , , , ,
Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data.  For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are…
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13 Dec 2020
By Ronny Allan
2 Comments
Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials and Research, Patient Advocacy, Treatment, , , , , , , , , , , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community.  This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this…
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18 Sep 2020
By Ronny Allan
1 Comment
Clinical Trial: Phase II CLARINET FORTE Somatuline Autogel (Lanreotide) increased dosing frequency

Clinical Trial: Phase II CLARINET FORTE Somatuline Autogel (Lanreotide) increased dosing frequency

Clinical Trials and Research, Treatment, ,
CLARINET FORTE is a prospective single-arm, open-label, exploratory, international Phase II study to explore the efficacy and safety of an increased Somatuline® Autogel® (lanreotide) dosing frequency (120 mg every 14 days) in patients with metastatic or locally advanced unresectable pancreatic NETs or midgut NETs, with centrally-accessed progression within the last two years while on a standard lanreotide regimen (120 mg every 28 days) for more than 24 weeks.Data announced in September 2020 at the 2020 European Society for Medical Oncology (ESMO), indicated the phase 2 results support a clinically meaningful benefit to a population of patients with high unmet medical need…
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12 Sep 2020
By Ronny Allan
1 Comment
Clinical Trial of Tidutamab in Neuroendocrine Cancer (DUET-1)

Clinical Trial of Tidutamab in Neuroendocrine Cancer (DUET-1)

Clinical Trials and Research, , , , , ,
UPDATE:  13th July 2022Xencor halted this clinical trial due to disappointing results.  Click here to read moreXencor, a clinical-stage biopharmaceutical company developing engineered monoclonal antibodies for the treatment of cancer and autoimmune diseases, today announced that initial data from its ongoing Phase 1 dose-escalation study of tidutamab (XmAb®18087), an SSTR2 x CD3 bispecific antibody, in patients with neuroendocrine tumors (NETs) will be presented during the upcoming North American Neuroendocrine Tumor Society’s 2021 Multidisciplinary NET Medical Virtual Symposium (note - it was also presented at NANETS 2020). What are monocloncal antibodies?  See here About Tidutamab Monoclonal antibodies are laboratory-produced molecules engineered to…
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05 Sep 2020
By Ronny Allan
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Flower power and the happy hormones

Flower power and the happy hormones

Inspiration, Living with Neuroendocrine Cancer, , , , ,
One of the featured pictures below is a sunflower from 2015, something I planted with my own hands, and it grew taller than me (not difficult), even taller than my garden fence (more difficult).  Of course, I have to mention my wife Chris because she does infinitely more gardening than I do, and she would have nurtured the sunflower from start to finish after I planted it.  Nonetheless, I still felt a remarkably close association with the outcome!  It made me happy just to look at it! My most liked Facebook posts in 2020 (the year of COVID) related to plant…
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24 Jul 2020
By Ronny Allan
10 Comments
Don’t be cavalier with a cancer diagnosis

Don’t be cavalier with a cancer diagnosis

Awareness, Inspiration, , , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told.  In fact it happened on 24th July 2010, 10 years to the date this post was published.  (Spoiler alert - I'm still here).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,…
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24 Jun 2020
By Ronny Allan
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Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Clinical Trials and Research, Treatment, , , , , , , , , , ,
Click here to see the A to Z of Neuroendocrine Cancer What is Sunitinib (Sutent)? Manufactured by Pfizer, this is a targeted biological therapy or more accurately, a multitargeted tyrosine kinase inhibitor (TKI).  You may also see it described as an anti-angiogenic agent on the basis that these tumor types are highly vascularized and show high expression of something called vascular endothelial growth factor (VEGF), a key driver of angiogenesis in neuroendocrine tumors. Because NETs are generally hypervascularized tumors, treatment with antiangiogenic drugs seems a rational approach. A complex process but in the simplest of terms, sunitinib blocks a particular…
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22 Jun 2020
By Ronny Allan
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Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Clinical Trials and Research, Treatment, , , , , , , , , , ,
What is Everolimus (Afinitor)? Manufactured by Novartis, this is a targeted biological therapy or more accurately, a mammalian Target of Rapamycin (mTOR) inhibitor. It works by stopping some of the signals within cells that make them grow and divide. Everolimus stops a particular protein called mTOR from working properly. mTOR controls other proteins that trigger cancer cells to grow. So everolimus helps to stop the cancer growing or may slow it down.  The drug is also approved for Renal Cell Carcinoma (RCC) and hormone-receptor-positive advanced Breast Cancer. The drug is administered in oral form (tablet). The recommended dose for AFINITOR®…
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30 Dec 2019
By Ronny Allan
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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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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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