23 Nov 2024
By Ronny Allan
4 Comments
Carcinoid – What’s in a name?

Carcinoid – What’s in a name?

Awareness, , , , , , , , , , ,
A quick primer on the word 'CARCINOID'.  It originates from the term 'Carcinoma-like'.  'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'.  This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion. The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour.  That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed…
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21 Nov 2024
By Ronny Allan
6 Comments
A spotlight on Multiple Endocrine Neoplasia (MEN)

A spotlight on Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine Cancer, , , , , , , , , , , , , , , , ,
First published 2015, updated for 2025. Overview We all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN).  I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine-related effects. MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues).  Neoplasia is…
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14 Nov 2024
By Ronny Allan
10 Comments
Update – Oncolytic Virus Trials for Neuroendocrine Cancer

Update – Oncolytic Virus Trials for Neuroendocrine Cancer

Clinical Trials and Research, , , ,
Updated 28th May 2025 What exactly are Oncolytic Viruses? Oncolytic Viruses infect and break down cancer cells but not normal cells. Oncolytic viruses can occur naturally or can be made in the laboratory by changing other viruses. Certain oncolytic viruses are being studied in the treatment of cancer. Some scientists say they are another type of immunotherapy whilst others say it's too early to classify them as such. The good news is that Neuroendocrine Cancer seems to figure in this work with two of these viruses apparently working on mice to date. Listed below are two active projects involving NETs,…
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12 Nov 2024
By Ronny Allan
0 Comments
Living with Neuroendocrine Tumours – the 14 year itch

Living with Neuroendocrine Tumours – the 14 year itch

Diet and Nutrition, Patient Advocacy, Survivorship, The NET Effect Series, Treatment, ,
Following a diagnosis of metastatic small intestine NET in 2010, I wrote a blog in 2017 entitled "The 7 year itch".  I thought I would re-release it having reached 14 years and almost 7 years since it was published. When I wrote it, I was inferring a link between Lanreotide and my ongoing leg itching.  After some years, I also started to see correlations between itching and many other things including but not limited to the seasons of the year (i.e. it seemed to be worse in the winter).  As another example, I also noticed itchy skin could be caused…
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10 Nov 2024
By Ronny Allan
0 Comments
I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Patient Advocacy, Treatment, , , , , ,
1 year after 2 x surgery - at a ball organised by my surgeon Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after surgery 14 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and…
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09 Nov 2024
By Ronny Allan
0 Comments
Piss off Cancer, it’s been 14 years since my “big surgery”

Piss off Cancer, it’s been 14 years since my “big surgery”

Awareness, Inspiration, Patient Advocacy, , ,
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 2024
By Ronny Allan
0 Comments
Pancreatic cysts – something or nothing?

Pancreatic cysts – something or nothing?

Patient Advocacy, The NET Effect Series, , , ,
What are cysts? Cysts are sacs or capsules that form in the skin or inside the body. They may contain fluid or semisolid material. Although cysts can appear anywhere in the body, most frequently they live in the skin, ovaries, breasts or kidneys. Most cysts are not cancerous. What are pancreatic cysts? Pancreatic cystic lesions are being found more frequently on cross-sectional imaging studies (e.g. conventional imaging such as CT/MRI/Ultrasound). Although many of these cysts are discovered incidentally in asymptomatic patients, many have a malignant potential. Coupled with the lack of a single diagnostic test for accurate risk stratification and…
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08 Nov 2024
By Ronny Allan
0 Comments
48 hours in November 2010 – Awareness and Hope from Ronny Allan

48 hours in November 2010 – Awareness and Hope from Ronny Allan

Awareness, Inspiration, Patient Advocacy, Survivorship, Treatment, , , ,
D Day  D for Diagnosis. I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would…
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07 Nov 2024
By Ronny Allan
0 Comments
Don’t miss these 5 posts on RonnyAllan.NET

Don’t miss these 5 posts on RonnyAllan.NET

Patient Advocacy
Just click on the pictues and read (and hopefully share!) https://ronnyallan.net/2024/07/18/neuroendocrine-cancer-is-not-a-type-of-another-cancer-period/ https://ronnyallan.net/2022/11/23/the-ecstasy-of-neuroendocrine-cancer-survivor-wilko-johnson/ https://ronnyallan.net/2018/03/16/namaste-irrfan-khan/ https://ronnyallan.net/2024/08/27/the-5-es/ https://ronnyallan.net/2017/06/08/living-with-neuroendocrine-cancer-8-tips-for-conquering-fear/ Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a…
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06 Nov 2024
By Ronny Allan
0 Comments
Neuroendocrine Cancer – no sweat!

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine Cancer, , , , , , , , , , , , ,
I see so many questions and comments in my private group about sweating, in particular, 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the…
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05 Nov 2024
By Ronny Allan
0 Comments
A Review of October 2024 on RonnyAllan.NET

A Review of October 2024 on RonnyAllan.NET

Newsletters
Here is the monthly summary of October 2024 on RonnyAllan.NET Awareness helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered.  Click on the post graphic to read it. I wish I could do more but there's just little old me!  And Chris too of course for those following my exploits on Facebook Page Ronny Allan.  Fortunatey I have a great 2IC and admin team in my private group, so that runs as…
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30 Oct 2024
By Ronny Allan
1 Comment
Piss off cancer – I’m 69.5!

Piss off cancer – I’m 69.5!

Inspiration,
I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age.I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying.Without intervention I may not be here now to tell you this tale and who knows what would be…
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28 Oct 2024
By Ronny Allan
17 Comments
Things to do today

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship, , , , , , , ,
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something…
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27 Oct 2024
By Ronny Allan
0 Comments
I wish I had another cancer

I wish I had another cancer

Awareness, Inspiration, Patient Advocacy, ,
AN OPINION POST I’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that). Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’.  Ironically, although some cancers are almost certainly worse…
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26 Oct 2024
By Ronny Allan
10 Comments
Targeted Alpha-emitter Therapy (TAT) – the wave of the future in nuclear oncology/PRRT?

Targeted Alpha-emitter Therapy (TAT) – the wave of the future in nuclear oncology/PRRT?

Clinical Trials and Research, , , , , , , , , , , , , ,
What is Targeted Alpha-emitter Therapy? Regular PRRT which is authorised for use now, i.e. Lutathera/Lu177 is a beta therapy.  Targeted Alpha Therapy is based on the coupling of alpha particle emitting radioisotopes to tumour selective carrier molecules, such as monoclonal antibodies or peptides. These molecules have the ability to selectively target tumour cells even if they are spread throughout the body. They recognize the targeted cancer cells through antigens that are expressed on the cell surface and can bind selectively to these cells, similar a key fitting into a lock. In targeted alpha therapy these carrier molecules serve as vehicles…
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25 Oct 2024
By Ronny Allan
0 Comments
Rosacea – the NET Effect

Rosacea – the NET Effect

Patient Advocacy, The NET Effect Series, ,
Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today. It normally starts with a stinging feeling, an indication I'm about to experience some sort of inflammation. What eventually happens is something which looks like a 'whitehead' which I now know to be a 'pustule'. Sometimes there are multiples, and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering, but they tend to leave reddish marks which eventually fade. Very infrequently, these pustules would appear on…
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24 Oct 2024
By Ronny Allan
5 Comments
Pancreatic Cancer vs Neuroendocrine Cancer of Pancreatic Origin

Pancreatic Cancer vs Neuroendocrine Cancer of Pancreatic Origin

Awareness, , , , , , , , , ,
Reviewed and updated 24th October 2024 I campaign hard for Neuroendocrine Cancer awareness including continually pointing out that a Neuroendocrine Cancer with a pancreatic primary is NOT Pancreatic Cancer as is often quoted in the press. The two main reasons I take up these campaigns are as follows: 1. They are totally different cancers despite an anatomical relationship.  Although they can share a similar presentation, they can have different signs, different treatments, and vastly different prognostic outcomes. Anyone looking for useful information on either needs to be very careful on interpretation, they could end up with very bad advice and…
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22 Oct 2024
By Ronny Allan
1 Comment
6 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)

6 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , ,
Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrassed, they don't understand the specific cancer, they don't understand the prognostics and are scared to ask more. News outlets and social media don't really help them get to grips with these situations, everyone is receiving chemotherapy and will therefore lose their hair and everyone is going to die right?   Wrong, the cancer story is changing.  Sure, many people do die of cancer, and that's heartbreakingly sad.  But today, many cancers are now treatable, many people survive, some even living with cancer like they would with a…
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22 Oct 2024
By Ronny Allan
6 Comments
Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , ,
Update February 2026. Before you read this, please note: Why Practice Is Changing Faster Than the Guidelines Modern peri‑operative management for neuroendocrine tumours is evolving rapidly, and several factors explain why clinical practice in some expert centres has moved ahead of formal guidelines: 1. New evidence challenges long‑held assumptions Recent surgical series — most prominently from OHSU Portland USA — show that prophylactic octreotide does not reliably prevent carcinoid crisis and that crises behave more like distributive shock, responding better to vasopressors than to somatostatin analogues. This directly contradicts decades of dogma. 2. Guidelines update slowly by design Bodies such…
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14 Oct 2024
By Ronny Allan
0 Comments
Ronny Allan’s Weekly roundup – 7th to 13th October 2024

Ronny Allan’s Weekly roundup – 7th to 13th October 2024

Newsletters
Weekly roundup 7th - 13th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/11/5-blog-posts-worth-reading/ https://ronnyallan.net/2024/10/10/did-you-mean-to-lose-weight/ https://ronnyallan.net/2024/10/09/neuroendocrine-cancer-liver-directed-therapy/ https://ronnyallan.net/2024/10/07/ronny-allan-weekly-roundup-30th-september-6th-october-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs…
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11 Oct 2024
By Ronny Allan
0 Comments
5 blog posts worth reading

5 blog posts worth reading

Newsletters
Just click on the pictues and read (and hopefully share!) Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a clinical service, trial/study or therapy…
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10 Oct 2024
By Ronny Allan
5 Comments
Weight – the NET Effect

Weight – the NET Effect

Diet and Nutrition, Survivorship, The NET Effect Series, , , , , , , , , , , , , , , , , , , , , , , ,
Foreword After my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment. Fast forward 4 years, I had to buy some more suits as my weight was going back on. Fast forward 14 years and…
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09 Oct 2024
By Ronny Allan
11 Comments
Neuroendocrine Cancer – Liver directed therapy

Neuroendocrine Cancer – Liver directed therapy

Treatment, , , , , , , , , , , , , , , ,
October 2024. Updated to include Drug-Eluting Beads TACE Neuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver, there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes-indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known to be highly vascular which is a feature where growth inhibition and symptom relief may be achieved by specific 'blocking' agents - this is particularly the case with liver metastases in well-differentiated Neuroendocrine Tumours (NETs). Spread to the…
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07 Oct 2024
By Ronny Allan
2 Comments
Ronny Allan – weekly roundup 30th September – 6th October 2024

Ronny Allan – weekly roundup 30th September – 6th October 2024

Newsletters
Weekly roundup 30th - 6th October 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/10/05/ronny-allan-feedback-recommendations-and-reviews/ https://ronnyallan.net/2024/10/04/ronny-allan-background-to-my-diagnosis-and-treatment/ https://ronnyallan.net/2024/10/03/neuroendocrine-neoplasms-high-grade/ https://ronnyallan.net/2024/09/30/a-review-of-september-2024-on-ronnyallan-net/ https://ronnyallan.net/2024/09/30/ronny-allans-weekly-roundup-23rd-29th-september-2024/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my…
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05 Oct 2024
By Ronny Allan
0 Comments
Ronny Allan – Feedback, Recommendations and Reviews

Ronny Allan – Feedback, Recommendations and Reviews

Patient Advocacy
I'm so proud to receive many reviews from many healthcare and cancer organisations.  The ones below are featured and the list below that is a selection of patient received comments separate from my Facebook recommendations.  Too many to repeat here and I even survived some of them as they no longer exist. Dr Mark LewisDr Eric Liu Dr Julie Hallet - NET Surgeon Dr Heloisa Soares - to follow Other Feedback received Josh Pyle, Senior Marketing Director for WEGO Health and Co-Founder of River Otter Interactive Inc ... " It is hard to find the quality of content and mix…
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04 Oct 2024
By Ronny Allan
0 Comments
Ronny Allan – Background to my Diagnosis and Treatment

Ronny Allan – Background to my Diagnosis and Treatment

Patient Advocacy
Ronny Allan - Diagnosis and Treatment - Neuroendocrine Cancer From diagnosis to start of treatment The build-up to my diagnosis was covered in this blog article (Diagnosis - I'm no longer in Control).  This chance scenario led to a set of routine blood rests which highlighted a low haemoglobin score.  It was low enough to be referred to a specialist with the initial diagnosis being Iron Deficiency Anaemia.  After a plethora of tests including bloods, CT scan, Ultrasound scan and a liver biopsy (Ki67 5+), metastatic Neuroendocrine Tumour (NET) at Grade 2 was confirmed. During the secondary care diagnostic investigation,…
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03 Oct 2024
By Ronny Allan
5 Comments
A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, , , , , , , , , , , , , , , , , ,
Reviewed and updated 3rd Jan 2025 High Grade Neuroendocrine Neoplasms - the forgotten patient group? When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short.  Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming.  I too am guilty of having a large Facebook site falling into this category.  It's little wonder that those with high grade disease can often feel like the forgotten patient group. …
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30 Sep 2024
By Ronny Allan
0 Comments
A Review of September 2024 on RonnyAllan.NET

A Review of September 2024 on RonnyAllan.NET

Newsletters
Here is the monthly summary of September 2024 on RonnyAllan.NET The top post this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered.  Click on the post graphic to read it. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was away for some of…
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30 Sep 2024
By Ronny Allan
0 Comments
Ronny Allan’s weekly roundup – 23rd – 29th September 2024

Ronny Allan’s weekly roundup – 23rd – 29th September 2024

Newsletters
Weekly roundup 23rd - 29th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/29/f-you-cancer-im-still-here/ https://ronnyallan.net/2024/09/28/cessation-of-somatostatin-analogues-after-prrt-in-mid-hind-gut-and-pancreatic-neuroendocrine-tumours-stopnet/ https://ronnyallan.net/2024/09/25/sometimes-you-gotta-climb-that-hill-even-if-you-dont-want-to/ https://ronnyallan.net/2024/09/24/i-am-not-a-zebra/ https://ronnyallan.net/2024/09/24/weekly-roundup-from-ronny-allan-16th-22nd-september-2024/ https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to browse my website Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs…
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29 Sep 2024
By Ronny Allan
2 Comments
F*** you cancer, I’m still here!

F*** you cancer, I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
On 26 July 2010, had you said I'd be writing this 14 years later, I would have said no.I was diagnosed on 26th July 2010.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought.  10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think.  Think great doctors, better treatments, better guidelines and sprinkle some luck on top.  Some might say attitude helps but clearly scientific proof might be lacking…
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28 Sep 2024
By Ronny Allan
0 Comments
Cessation of Somatostatin Analogues After PRRT in Mid, Hind-Gut and Pancreatic Neuroendocrine Tumours (STOPNET)

Cessation of Somatostatin Analogues After PRRT in Mid, Hind-Gut and Pancreatic Neuroendocrine Tumours (STOPNET)

Clinical Trials and Research, , , ,
One of the common question areas I see in my patient group of 10,000+ members is about the use of somatostatin analogues (SSAs) prior to, during and after treatment with Peptide Receptor Radionuclide Therapy (PRRT). On a similar subject, I also see people asking about stopping SSAs long term regardless of PRRT, particularly if they are NED and stable. People also ask about individual patients who have decided to stop them and how they managed etc.  Clearly these are difficult discussions and anyone reading should be listening to their doctors, not mimicking what they read on patient groups. But they are…
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25 Sep 2024
By Ronny Allan
0 Comments
Sometimes you gotta climb that hill, even if you don’t want to

Sometimes you gotta climb that hill, even if you don’t want to

Inspiration, Survivorship, Travel with Ronny,
When I was diagnosed, I was very compliant with my doctors and nurses.  Whatever test they wanted, I'd cooperate. Whatever hurdle they wanted me to jump over, I would jump.  I always had questions though, I find an inquisitive mind helps with coping. That's not to say I enjoyed each experience but what I knew it was required to move onwards to the next step - everything was on the critical path.  In particular, the liver biopsy was a challenge but totally necessary to get to the diagnosis which would then dictate treatment and prognosis.  Surgery for Stage IV small intestine…
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24 Sep 2024
By Ronny Allan
0 Comments
Seriously, I’m not a zebra!

Seriously, I’m not a zebra!

Awareness, Patient Advocacy
One thing I've discovered when posting about this subject..... I'm not alone.  In fact, I was actually surprised how many people cannot abide the infatuation and borderline cultish adulation with black and white striped animal themed rubbish attached to everything they do (thus the cult tag).  It regularly emanates from certain parts (but thankfully not all) of the NET community, worryingly including certain doctors who should be focussed on Oncology, not Zoology. The main issue I have within the NET community is the 1940s thinking in the days when science and statistics were not advanced as they both are today.…
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24 Sep 2024
By Ronny Allan
0 Comments
Weekly Roundup from Ronny Allan – 16th – 22nd September 2024

Weekly Roundup from Ronny Allan – 16th – 22nd September 2024

Newsletters
Weekly roundup 16th - 22nd September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance https://ronnyallan.net/2024/09/21/weekly-roundup-9th-15th-september-2024/ https://ronnyallan.net/2024/09/20/cabozantinib-for-advanced-neuroendocrine-tumours-another-tool-in-the-treatment-toolbox/ https://ronnyallan.net/2024/09/19/childhood-cancer-awareness-month-neuroendocrine-cancer-featuring-elizabeths-story/ https://ronnyallan.net/2024/09/19/the-trouble-with-the-net-it-can-spread-false-hope/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my…
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22 Sep 2024
By Ronny Allan
9 Comments
Don’t be underactive with your Thyroid surveillance

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , ,
From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range.  On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement.  One month after taking these drugs, my thyroid…
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21 Sep 2024
By Ronny Allan
0 Comments
Weekly Roundup 9th – 15th September 2024

Weekly Roundup 9th – 15th September 2024

Newsletters, Patient Advocacy
Weekly roundup 9th - 15th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Latest Blog Posts My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group.  It follows that supporting my blog is also supporting those other outlets.  Click on the 4 blogs below published over this period. https://ronnyallan.net/2024/09/09/weekly-round-up-2nd-8th-september-2024/ https://ronnyallan.net/2024/09/10/ever-wonder-what-caused-your-neuroendocrine-cancer/ https://ronnyallan.net/2024/09/11/neuroendocrine-cancer-turn-surveillance-into-a-positive/ https://ronnyallan.net/2024/09/15/eat-that-doughnut/ Blog posts currently trending (last 48 hours) My Facebook Acivity Public Page…
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20 Sep 2024
By Ronny Allan
0 Comments
CABOMETYX® (cabozantinib) for pNET and epNET

CABOMETYX® (cabozantinib) for pNET and epNET

Clinical Trials and Research, Treatment,
18th October 2025.  Exelixis Announces Results from Subgroup Analysis of CABINET Phase 3 Pivotal Trial Evaluating CABOMETYX® (cabozantinib) in Advanced Lung and Thymic Neuroendocrine Tumors at ESMO 2025 | Exelixis, Inc. – CABOMETYX reduced the risk of disease progression or death by 81% versus placebo in patients with advanced lung or thymic neuroendocrine tumors (NET) – – The lungs are the second most common NET site of origin, yet limited treatment options are available Read announcement from Exelixis here. 23rd September 2025.  UK MHRA grants marketing authorization Ipsen (Euronext: IPN) announced today that UK MHRA has granted marketing authorization for cabozantinib…
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19 Sep 2024
By Ronny Allan
5 Comments
Childhood Cancer Awareness Month – Neuroendocrine Cancer featuring Elizabeth’s story

Childhood Cancer Awareness Month – Neuroendocrine Cancer featuring Elizabeth’s story

General, , , , , , , , , ,
September is Childhood Cancer Awareness Month!  The newspapers and social media have been featuring many childhood cancer articles. It's known that NENs do occur in childhood, particularly those associated with familial/hereditary syndromes including (but not limited to), Multiple Endocrine Neoplasia (MEN), hereditary Pheochromoctyoma/Paraganglioma (PPGL), familial medullary thyroid carcinoma (FMTC); Von-Hippel Lindau (VHL) syndrome.  But I also see young people diagnosed with sporadic (not hereditary) appendiceal Neuroendocrine Tumours (NET), most often incidentially found following appendicitis investigations.  There are very rare instances of sporadic findings in regular NENs of varying primary types (including Neuroendocrine Carcinomas (NEC)).I dedicate this post to Elizabeth Rooney…
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19 Sep 2024
By Ronny Allan
1 Comment
The trouble with the NET is that it can spread ……. false hope

The trouble with the NET is that it can spread ……. false hope

Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", , ,
Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer and how to treat it can lead to needless worry and even hinder good prevention and treatment decisions.  Even food and nutritional supplements fall into this area.  I see these things frequently in my own community, I don't like and I try my hardest to avoid these myths appearing in my own patient group and on…
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15 Sep 2024
By Ronny Allan
2 Comments
Eat that doughnut!

Eat that doughnut!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy,
I was recently reminded of a post I wrote called "The Other 5 Es".  I later changed the name to "The 6 Es".  The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many. I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut".  What I didn't confirm was that I was using a metaphor i.e.…
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11 Sep 2024
By Ronny Allan
0 Comments
Neuroendocrine Cancer: turn surveillance into a positive

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, ,
It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance (scans and other imaging, tests, etc) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more…
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10 Sep 2024
By Ronny Allan
2 Comments
Ever wonder what caused your Neuroendocrine Cancer?

Ever wonder what caused your Neuroendocrine Cancer?

Patient Advocacy,
When you're diagnosed, you go through a whole host of emotions. It's not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words "you have cancer", it's other stuff such as anger and denial.  With the latter, the denial normally wears off as you finally accept the predicament.  In hindsight, the anger is interesting because there can be a mixture of thoughts including "why me", "what could I have done to head this off"; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my…
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09 Sep 2024
By Ronny Allan
0 Comments
Weekly round-up 2nd – 8th September 2024

Weekly round-up 2nd – 8th September 2024

Newsletters, Patient Advocacy,
Weekly round-up (2nd - 8th September 2024) News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Blog Activity My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group.  It follows that supporting my blog is also supporting those other outlets. What's new between 2nd Sept and 8th Sept 2024? My 2024 experience with Hives but what were the likely cause(s) - read more here Invisible…
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07 Sep 2024
By Ronny Allan
2 Comments
Don’t worry, it’s benign!

Don’t worry, it’s benign!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , , , , , , , , ,
One of the most controversial aspects of 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). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant. Any standard cancer nomenclature definition of the word…
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06 Sep 2024
By Ronny Allan
11 Comments
Palliative Care – it might just save your life

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , ,
When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example.  Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared…
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05 Sep 2024
By Ronny Allan
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Active Surveillance May Benefit Certain Patients With Small Nonfunctional Pancreatic NETs

Active Surveillance May Benefit Certain Patients With Small Nonfunctional Pancreatic NETs

Patient Advocacy, Treatment, , ,
Abstract. Results from a retrospective review demonstrated significant increases in the use of observation in patients with small nonfunctional pancreatic neuroendocrine tumors (NF-pNETs) from 2015 to 2020, as published in JAMA Surgery.  Researchers also found that patients seen at academic centers were more likely to undergo observation compared with those seen at nonacademic centers.Currently, experts are uncertain of the metastatic potential of NF-pNETs, and the potential morbidity linked with pancreatic surgery, as noted in the study. This may be associated with patients opting for surgery vs active surveillance, although recent guidelines endorse the use of active surveillance backed by retrospective data.The…
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05 Sep 2024
By Ronny Allan
0 Comments
Neoadjuvant 177Lu-DOTATATE for non-functioning pancreatic neuroendocrine tumours (NEOLUPANET): multicentre phase II study

Neoadjuvant 177Lu-DOTATATE for non-functioning pancreatic neuroendocrine tumours (NEOLUPANET): multicentre phase II study

Patient Advocacy, Treatment,
Abstract. NEOLUPANET was a multicentre, single-arm, phase II trial, conducted between March 2020 and February 2023 at eight Italian institutions.  Patients- non-functioning pancreatic neuroendocrine tumours (NF-PanNETs) at high risk of recurrence, with positive uptake on 68Ga-labelled DOTA PET. They underwent neoadjuvant 177Lu-labelled DOTA0-octreotate (177Lu-DOTATATE) therapy followed by surgical resection at an acceptable complication rate, with no postoperative death. The majority of patients had a partial response without any progressive disease. Neoadjuvant means treatment given as a first step to shrink a tumour before the main treatment, which is usually surgery.  NF-PanNETs are more common than their functional counterparts. NF-PanNETs display…
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04 Sep 2024
By Ronny Allan
0 Comments
Tolerability and outcomes of neuroendocrine tumors treated with PRRT and SBRT

Tolerability and outcomes of neuroendocrine tumors treated with PRRT and SBRT

Patient Advocacy, Treatment,
I've written about Peptide Receptor Radionuclide Therapy (PRRT) many times and also written summary of evidence of the use of Stereotactic Body Radiation Therapy (SBRT) in Neuroendocrine Neoplasms (NENs).  The latter is external beam radiotherapy whereas the former is a totally different technique delivering radiation combined with somatostatin analogues via an intra-venous (IV) route.  Both have the same aim, to eradicate or reduce tumour bulk.  External beam (EB) has been around for some time but PRRT is relatively new.  That said, EB in the form of SBRT is state of the art EB radiotherapy. I will link in those two blog…
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04 Sep 2024
By Ronny Allan
4 Comments
Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Clinical Trials and Research, Patient Advocacy, Treatment, , , , , ,
Update 4th September 2024.  I have been informed by a third party and trusted source that this upgrade to Lanreotide Ipsen injection device which I published in 2022, will not happen. Apparently, the project announced in 2022 never really got off the ground.  My own guess is that Ipsen's business case expenditure was too much risk given the rise of the generic Lanreotide meds around the same time, i.e. the return of investment (ROI) would not be recouped.I do not understand why Ipsen did not offer a lower price to remain competitive in UK and elsewhere.  It makes me think that…
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04 Sep 2024
By Ronny Allan
8 Comments
Serotonin – it’s a no-brainer!

Serotonin – it’s a no-brainer!

Patient Advocacy, , , , , , , , , , , , , , , ,
  Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by…
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