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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03 Sep 2023
By Ronny Allan
4 Comments
Passive patient or active advocate?

Passive patient or active advocate?

Awareness, Inspiration, Survivorship
  I've been researching Neuroendocrine Cancer for some time now.  Why do I do this?  Whilst I have a great medical team, I'd also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don't want to be a passive patient, I want to be an active advocate for my own health.  I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd). I actually enjoy researching neuroendocrine disease and I'd like to think it was all in one book somewhere -…
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31 Aug 2023
By Ronny Allan
0 Comments
A review of August 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

A review of August 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

Newsletters, ,
On my website RonnyAllan.NET, August was as quiet as July but in the second half, I accelerated publication of some posts.  The month was also helped by the publication of a solid tumour clinical trial and the breaking news of the CABOZANITINIB trial for NETs (if you missed those see below).  I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night.  I am very grateful.Below,…
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30 Aug 2023
By Ronny Allan
16 Comments
Is your glass half empty or half full?

Is your glass half empty or half full?

Inspiration, Living with Neuroendocrine Cancer, , , , ,
Most people have probably heard of the saying "is your glass half empty or half full".  If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way.  I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to…
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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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26 Aug 2023
By Ronny Allan
16 Comments
Living with an incurable cancer – does mind over matter help?

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , ,
When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my own experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  This blog you are reading now was only ever intended to be a temporary supporting tool for that hike and its build up; but I was persuaded by good reviews and viewing numbers to keep it going. That suddenly made it more difficult!In my early blogs, there were several 'no go areas' which were either too complex or potentially…
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18 Aug 2023
By Ronny Allan
0 Comments
Blood pressure – The NET Effect

Blood pressure – The NET Effect

The NET Effect Series
Blood pressure (BP) is a commonly discussed subject in my private group of over 13,000 members. But when you look at the prevalence of elevated BP beyond nationally stated thresholds (hypertension), it's patently obvious that many people with a NET will have elevated BP issues regardless (see figures below). Nonetheless, patients often attempt to link it to NET, including when a diagnosis of NET comes after their hypertension diagnosis, although this is possible sequence in certain scenarios covered in this blog post. I also noted there were several causal sources of hypertension but with many other contributory factors. Correlation vs…
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12 Aug 2023
By Ronny Allan
2 Comments
Lung cancer diagnosed early because of new tool

Lung cancer diagnosed early because of new tool

Clinical Trials and Research, Patient Advocacy, , , ,
I'm a believer in science overtaking mortality figures and there is evidence of that already happening when you read the latest survival figures. But too many are still succumbing to this killer disease.  I also believe that artificial intelligence (AI) has the potential to help. Even with cancers of the lung, where known causes are heavily linked to death rates, are decreasing but that is mainly due to preventative measures such as stopping smoking.  However, not all cancers of the lung are caused by smoking. Most low-grade Lung NETs is a good example, there are others. I've had a flurry…
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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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05 Aug 2023
By Ronny Allan
3 Comments
Still here, just reshaped

Still here, just reshaped

Inspiration, , ,
The tallest tree in Wales had been damaged by a storm and was supposed to be cut down, but chainsaw artist Simon O'Rourke - Tree Carving found a better solution to symbolize the tree's last attempt to reach the sky. I suspect you could also call Simon a tree surgeon. I was reshaped too! In one of my diagnostic stories, I said that my body was slowly dying and that was just how it felt having been diagnosed with something that had not made some grand announcement. It slowly just crept into my life, occasionally giving small clues that it…
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02 Aug 2023
By Ronny Allan
0 Comments
Phase 1 Clinical Trial AOH1996 for the Treatment of Refractory Solid Tumors

Phase 1 Clinical Trial AOH1996 for the Treatment of Refractory Solid Tumors

Clinical Trials and Research, , ,
The City of Hope-developed small molecule AOH1996 targets a cancerous variant of the protein PCNA. In its mutated form, PCNA is critical in DNA replication and repair of all expanding tumors. Here we see untreated cancer cells (left) and cancer cells treated with AOH1996 (right) undergoing programmed cell death (violet). (Photo credit: City of Hope) This particular clinical trial for solid tumours has been widely reported in the news this week (July/august 2023). It is touted as a "cancer-killing pill" has appeared to "annihilate" solid tumours in early research - leaving healthy cells unaffected.  Whether these are the words of…
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31 Jul 2023
By Ronny Allan
0 Comments
A review of July 2023 on RonnyAllan.NET

A review of July 2023 on RonnyAllan.NET

Newsletters, , , , , , , ,
On my website RonnyAllan.NET, July was a bit quieter mainly due to my holiday and other commitments. However, there was still significant support within and without the community. Below, I'll list the top performing blog posts in July, I can assure you there is some great information in there, and you may have missed some of my newest blogs which made it to the top 10. Number 1 is the story of US Representative Joaquin Castro, great diagnostic story and showing signs of being vocal about NET and the US healthcare system to a much wider audience - this is…
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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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23 Jul 2023
By Ronny Allan
0 Comments
A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

Clinical Trials and Research, Patient Advocacy, Treatment, , , , , ,
A major challenge that cancer surgeons face currently is that there are no reliable methods to identify the tissue type during surgery (other than fast tracking tissue sampling). The surgical procedures, therefore, rely extensively on the experience and judgment of the surgeon to decide on how much tissue to remove around the tumor margins.  Sometimes this can result in the removal of excessive healthy tissue. On the other hand, not removing some tumour cells can often need a follow-up surgery to remove residual cancer tissue. This just adds to patient morbidity and long-term detrimental effects on the patient’s outcome. The use…
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18 Jul 2023
By Ronny Allan
1 Comment
A person with Cancer fell into a hole and couldn’t get out……….

A person with Cancer fell into a hole and couldn’t get out……….

Awareness, Patient Advocacy, Survivorship, , , , ,
A person with Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper. A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper still…
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17 Jul 2023
By Ronny Allan
2 Comments
NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment, , , , ,
NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny Allan What is a NET Specialist? "What is a NET Specialist" is a frequently asked question but there's no official definition of what constitutes a "NET Specialist", and it may differ from country to country/from region to region.  Similarly, many people ask what makes a doctor an expert and that is a difficult question but let's just say specialist and expert are the same thing given there is no exam or special qualification to become one. In the broadest sense, a NET Specialist is a doctor…
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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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01 Jul 2023
By Ronny Allan
0 Comments
Summary of June 2023 on RonnyAllan.NET

Summary of June 2023 on RonnyAllan.NET

Newsletters, , , ,
Summary -  June was a relatively quiet month on my website RonnyAllan.NET - mainly due to me being on holiday for much of it! However, a respectable 18,000 blog views are not to be sniffed at! The top 10 for June are now listed. Take a look please, open them up, read them, share them. 1 Sometimes, you gotta climb that hill, even if it hurts (ronnyallan.net) This must have struck a chord.  It's not a story about physical fitness, it's a metaphor about the mental challenges of living with cancer. 2 Currently trending on RonnyAllan.NET - Ronny Allan -…
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10 Jun 2023
By Ronny Allan
6 Comments
Sometimes, you gotta climb that hill, even if it hurts

Sometimes, you gotta climb that hill, even if it hurts

Inspiration, Patient Advocacy, Survivorship, ,
I started my "sometimes you gotta climb that hill" series/campaign some years so.  I used it as a metaphor based on my own experience of actually climbing up hills.  In the first couple of years after diagnosis, there was no way I could have done some of the physical stuff I can do now - having 3 surgeries and recovering from all 3 put paid to that.  But in hindsight, I don't believe I could have done some of these hills before I was diagnosed!  To be bluntly honest with myself and you guys, I was too busy at work…
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07 Jun 2023
By Ronny Allan
0 Comments
A spotlight on duodenal Neuroendocrine Neoplasms (dNENs)

A spotlight on duodenal Neuroendocrine Neoplasms (dNENs)

A spotlight on NENs - Types, , , , , , ,
What are Duodenal Neuroendocrine Neoplasms (dNEN)? The duodenum is technically part of the small intestine, and you can find that in most anatomy-based descriptions. One of the research references I used was titled "Somewhere between the pancreas and the small intestine" and in the case of Duodenal NENs (dNENs), I can understand why they adopted that unconventional anatomy description.  I suspect they contextually meant that they are not like either of these organs, but they share some similarities. They are not normally treated like small intestine NETs (SI NETs) or pancreatic NETs (pNETs) but they share some relationships, particularly with…
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04 Jun 2023
By Ronny Allan
2 Comments
Summary of May 2023 on RonnyAllan.NET

Summary of May 2023 on RonnyAllan.NET

Newsletters, Patient Advocacy
Summary May produced the best statistics in 2023, mainly due to your support for my blog post on Maria Menounos whose announcement headlined as "Pancreatic Cancer" caused a storm within the Neuroendocrine Cancer community. Below, I'll list the top performing blog posts in May and no secret which one is listed first. Repeat after me: Maria Menounos has Neuroendocrine Cancer (ronnyallan.net) Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3) (Beta plus) - (ronnyallan.net) The Human Anatomy of Neuroendocrine Cancer - Ronny Allan - Living with Neuroendocrine Cancer A spotlight on Chromogranin A (ronnyallan.net) Neuroendocrine Cancer: Catch…
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03 Jun 2023
By Ronny Allan
1 Comment
Getting back in the saddle

Getting back in the saddle

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with Ronny,
a 50-mile ride - ribs feeling fine! After a month of chest infection 2023/24 The "getting back in the saddle" metaphor I thought back about a few periods since my diagnosis on 26th July 2010 about how I would 'get back in the saddle'. I suspect many cancer patients experience similar junction points in their own journeys.  After I was told about my metastatic Neuroendocrine Cancer, work was my anchor, something that I felt comfortable and in control, so in effect that was my metaphoric saddle in the early days. But as my treatment came into view, particularly major surgery,…
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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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24 May 2023
By Ronny Allan
0 Comments
A spotlight on Chromogranin A

A spotlight on Chromogranin A

A Spotlight on NENs - Testing Series, Patient Advocacy, , , , ,
What is Chromogranin A? Chromogranin A (CgA) is an acidic protein released along with catecholamines from chromaffin cells and nerve terminals. This statement alone might explain why it's a good marker to use with Neuroendocrine Neoplasms.  It is said to be a measure of tumour bulk. Depending on the test kit being used, you may also see test results for Chromogranin B (CgB) alongside CgA. CgB is said to be less affected by false positives and forms a useful adjunct to the more established chromogranin A measurement.  The brand of test kit which includes CgB tends to be confined to…
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18 May 2023
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Catch them early, not late!

Neuroendocrine Cancer: Catch them early, not late!

Awareness, Patient Advocacy, , , , , ,
Diagnosing Neuroendocrine Neoplasms (NENs). It's no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can sometimes be difficult to see.  Plus, many patients present with relatively routine day to day symptoms suggesting a myriad of day-to-day illnesses seen daily in every GP/PCP practice. But conversely, many are found incidentally while checking for something else, or in reaction to a visit to the ER/A&E or as a referral by primary care physicians for further checks at secondary facilities.  A few examples: 1. Most appendiceal NETs are found when patients present with…
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12 May 2023
By Ronny Allan
0 Comments
A spotlight on Rectal Neuroendocrine Neoplasms

A spotlight on Rectal Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, ,
What are Rectal NENs Rectal Neuroendocrine Neoplasms (NENs) (rNENs) account for approximately 1-2% of all primary cancers in the rectum.  The other main cancer types found in the rectum are regular adenocarcinomas (the vast majority) and some other rare types including Gastrointestinal stromal tumors (GIST) and Lymphoma. The vast majority of rNENs will be well differentiated, i.e. rectal Neuroendocrine Tumours (rNETs) and are mostly indolent tumours treated effectively with surgical procedures if less than 1cm in size. Above that size there are different scenarios. Most will be found incidentally upon presentation of classic rectal symptoms or via colonoscopy screenings and…
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10 May 2023
By Ronny Allan
0 Comments
Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3)

Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3)

Clinical Trials and Research, , , , , ,
Update 14th December 2025 - Results from the Phase 0 proof of concept trial. Conclusion [161Tb]Tb-DOTA-LM3 shows a 7.6-fold-higher tumor absorbed dose than that found when using [177Lu]Lu-DOTATOC. The tumor–to–bone marrow absorbed dose ratio was in the same range for both radiopharmaceuticals. The promising dosimetry and safety results from this phase 0 study will lay the foundation for further clinical development of [161Tb]Tb-DOTA-LM3. Dose-escalation trials and peptide dose optimizing studies are warranted to establish the maximum tolerated activity per cycle and assess long-term efficacy. The integration of 161Tb into PRRT regimens has the potential to redefine the therapeutic landscape for NETs,…
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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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01 May 2023
By Ronny Allan
1 Comment
Summary of April 2023 on RonnyAllan.NET

Summary of April 2023 on RonnyAllan.NET

Living with Neuroendocrine Cancer, Newsletters,
Summary of RonnyAllan.NET website activity in April 2023 The top 10 most read posts in April are included below as the main product of this summary of my website RonnyAllan.NET in April 2023. A challenging month given other commitments and a rib injury sustained on holiday but pleased with my output.  I hope there is something you missed and can catch up here.  As usual, share this with anyone you think may benefit. Many thanks for reading. Oh yes, it's the great pretender - a new entry A new RonnyAllan.NET awareness campaign and it deserves to be shared to the world…
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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 more…
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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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23 Apr 2023
By Ronny Allan
0 Comments
Low FODMAPs – The NET Effect

Low FODMAPs – The NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series, , , , , , ,
Background Many people with NET have had issues prior to diagnosis and then continue to have similar issues after. For some it will be either one, i.e. no issues before but issues after or vice versa.  However, it's even possible that some people have will have different issues after diagnosis than they had before, e.g. the side effects of the treatment will produce new problems for those people.  In the early days, I once said to my Oncologist "I was never misdiagnosed with irritable bowel syndrome (IBS) but I sometimes feel like I have it now". IBS is said to…
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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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10 Apr 2023
By Ronny Allan
0 Comments
GLP-1 receptor agonists (e.g. semaglutide) for adults with type 2 diabetes/weight loss – The Neuroendocrine Tumour (NET) Effect

GLP-1 receptor agonists (e.g. semaglutide) for adults with type 2 diabetes/weight loss – The Neuroendocrine Tumour (NET) Effect

Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series, , ,
Before you read this… This article is provided to support understanding of how GLP-1 receptor agonists (for example, semaglutide) may relate to type 2 diabetes, weight loss, and neuroendocrine tumours (NETs). It is intended for general education only and is not suggesting that these medicines are suitable or unsuitable for you or anyone else. Every case is different. Only your own specialist team can assess your individual situation and advise on the risks, benefits, and alternatives of GLP-1 receptor agonists or any other treatment in the context of your health and any NET diagnosis.   Updated 24 Dec 2025 Novo…
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03 Apr 2023
By Ronny Allan
4 Comments
Neuroendocrine Cancer: oh yes, it’s the great pretender

Neuroendocrine Cancer: oh yes, it’s the great pretender

Awareness, Patient Advocacy, ,
When I was diagnosed, I didn't even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment. It was hiding But it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor.  And what would this doctor have said at the time? I was never misdiagnosed because I was never diagnosed with anything that wasn't already there and…
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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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26 Mar 2023
By Ronny Allan
0 Comments
A spotlight on Appendiceal Neuroendocrine Neoplasms

A spotlight on Appendiceal Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, , ,
What are Appendiceal NENs Appendiceal Neuroendocrine Neoplasms (NENs) account for approximately 60% of all primary cancers in the appendix.  The other main cancer types found in the appendix are regular adenocarcinomas (including signet ring cell and goblet cell) and mucinous neoplasms such as Pseudomyxoma Peritonei (PMP) or Low-Grade Mucinous Neoplasms (LAMD). Appendiceal neuroendocrine tumours (aNET) (i.e. well differentiated) account for 75% of all aNENs, are mostly indolent tumours treated effectively with simple appendectomy. In fact, most are incidentally found upon presentation of right lower quadrant (RLQ) pain in keeping with appendicitis. They are typically (but not exclusively) diagnosed in younger…
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24 Mar 2023
By Ronny Allan
0 Comments
Nuclidium wins award to study NET radiopharmaceutical – Phase 1 Clinical Trial of TraceNET (TM)

Nuclidium wins award to study NET radiopharmaceutical – Phase 1 Clinical Trial of TraceNET (TM)

Clinical Trials and Research, , , ,
What is TraceNETTM TraceNETTM is a a novel copper-based 'radiodiagnostic' for detecting neuroendocrine tumours (NET). The PET imaging agent candidate is the diagnostic component of NUCLIDIUM’s theranostic program, which comprises a true theranostic pair for diagnosing and treating NET patients, leveraging the company’s unique copper-based approach. The Phase 1 program for the diagnostic is the first step in its clinical development and is planned to commence in the first half of 2023. Nuclidium’s TraceNETTM program aims to overcome key limitations of existing radiodiagnostics and their corresponding therapeutics by increasing the sensitivity and diagnostic accuracy of NET imaging, including detecting metastases, while…
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16 Mar 2023
By Ronny Allan
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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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12 Mar 2023
By Ronny Allan
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A Newsletter from RonnyAllan.NET – 13th March 2023

A Newsletter from RonnyAllan.NET – 13th March 2023

Awareness, Newsletters
Newsletter from Ronny Allan - 13th March 2023 Welcome to my new template newsletter compiled using WordPress (my blog app). This is the 2nd in this format, and I will continue in the absence of a Newsletter app that meets my needs. It's been another busy month as you will see below. But please take the time to read through as I can almost guarantee there will be something you missed and want to read and share! Some of the items below will make you laugh but others may make you cry. Latest Blog Posts My award-winning blog is central…
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10 Mar 2023
By Ronny Allan
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Fructose intolerance – the NET Effect

Fructose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series, , , , , ,
Background  When I cast my mind back to my very first surgery, I remember all sorts of 'plumbing' issues but was told it would take a while for my adjusted plumbing to repair and do its work once more. It's not gone fully back to normal, but I accept minor side effects of getting rid of cancer (metastatic with small intestine NET primary). My diet is slightly different nowadays as I endeavour to return to that normality, and I have a good handle on what makes me move faster AND slower. Constipation is not good either, so I try to find a…
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09 Mar 2023
By Ronny Allan
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A tribute to the life and legacy of Miranda Filmer

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials and Research, Inspiration, , , , ,
It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that.  But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease.  There are others but I find these are the most common scenarios I see in younger people.  For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to…
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05 Mar 2023
By Ronny Allan
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Treatment for Neuroendocrine Cancer: Beware of the alternatives

Treatment for Neuroendocrine Cancer: Beware of the alternatives

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment,
The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say.  I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to…
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04 Mar 2023
By Ronny Allan
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RonnyAllan.NET – Summary of February 2023 – Ronny Allan – Living with Neuroendocrine Cancer

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

Newsletters, Patient Advocacy
Summary Another great 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.  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 February are listed below: Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes) This is not a surprise, it's one of my top 6 ever but it got a good read last…
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22 Feb 2023
By Ronny Allan
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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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19 Feb 2023
By Ronny Allan
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Sometimes I have to climb hills for the mental challenge

Sometimes I have to climb hills for the mental challenge

Inspiration
Facing cancer tests both the mind and the body. Hill climbing—literal and metaphorical—captures that dual challenge perfectly. When I was diagnosed with Grade 2 metastatic Neuroendocrine Cancer in 2010, it came as a shock. I didn’t feel unwell enough to imagine I had stage IV disease. At first, I simply carried on working, assuming it was “something and nothing” and that normality would soon return. Over time, I learned that optimism and realism don’t always align, and I eventually settled somewhere between the two, adjusting my route as I went. My journey rose and fell in ways that felt very…
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18 Feb 2023
By Ronny Allan
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Belzutifan for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), or Von Hippel-Lindau (VHL) Disease-Associated Tumors

Belzutifan for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), or Von Hippel-Lindau (VHL) Disease-Associated Tumors

Clinical Trials and Research, Treatment, , , , , ,
What is von Hippel-Lindau disease (VHL)?Von Hippel-Lindau disease (VHL) is an autosomal dominant disease that can predispose individuals to multiple neoplasms. Germline pathogenic variants in the VHL gene predispose individuals to specific types of benign tumors, malignant tumors, and cysts in many organ systems. These include central nervous system hemangioblastomas; retinal hemangioblastomas; clear cell renal cell carcinomas and renal cysts; pheochromocytomas, cysts, cystadenomas, and neuroendocrine tumors of the pancreas; endolymphatic sac tumors; and cystadenomas of the epididymis. What is Belzutifan (Welireg)?It is an oral hypoxia-inducible factor-2 alpha (HIF-2α) inhibitor. As an inhibitor of HIF-2α, belzutifan reduces transcription and expression of HIF-2α target genes associated with cellular proliferation, angiogenesis and…
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17 Feb 2023
By Ronny Allan
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A Phase II Clinical Trial of Nivolumab and Temozolomide for Neuroendocrine Neoplasms

A Phase II Clinical Trial of Nivolumab and Temozolomide for Neuroendocrine Neoplasms

Clinical Trials and Research, , , , , , , , ,
What is Nivolumab (Opdivo) Nivolumab is a type of cancer treatment drug called an immunotherapy. It is a treatment for a number of different types of cancer. You might have it as part of a clinical trial for other types of cancer. What is Temozolomide (Temodal) Temozolomide is a type of chemotherapy.  It is well known in Neuroendocrine Cancer as the TEM in CAPTEM Trial Summary The purpose of the trial.  Treatment options are sometimes limited in patients with metastatic neuroendocrine neoplasms (NEN). The primary endpoint was response rate (using RECIST 1.1). Secondary endpoints included progression-free survival (PFS), overall survival…
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