I’m only as good as my last scan

I’m only as good as my last scan

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

‘Chinese Dumplings’ and Neuroendocrine Cancer

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

Surgery – the gift that keeps on giving

I first wrote this article in December 2014.  My thoughts went back to my first surgery in 2010 when I was discharged 4 weeks before Christmas.I had been diagnosed with metastatic Neuroendocrine Cancer in July 2010 having been told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking can confer some survival advantage.  Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by…
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Neuroendocrine Cancer: If your doctors don’t suspect something, they won’t detect anything!

Neuroendocrine Cancer: If your doctors don’t suspect something, they won’t detect anything!

One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default…
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Neuroendocrine Tumours (NET) – benign vs malignant

Neuroendocrine Tumours (NET) – benign vs malignant

Reviewed and Updated 13th March 2024 One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question.  It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET…
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The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2022 classification changes)

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2022 classification changes)

- Updated 11th March 2024 - This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of Neuroendocrine Neoplasms is so significant, so gamechanging, that I have re-released the updated text. You may see these important publications called 'Blue Books'. Words are very important in Neuroendocrine Neoplasms (NENs).  Nomenclature has important meaning and context more than most other cancers due to the heterogeneity of this group of neoplasms.  Grade and Stage are two factors inextricably linked to the nomenclature and while there have been less changes in these…
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Neuroendocrine Cancer – diagnostic challenges:  sometimes quiet, sometimes noisy

Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

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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My stomach cramps my style

My stomach cramps my style

When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!).  In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'.  Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......).This major undertaking was within 4 years of my diagnosis and within two years of 3 surgeries and I was borderline stable.  I wanted to get it done while I was able!As a Cancer patient, there were some issues I…
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A spotlight on 5-HIAA

A spotlight on 5-HIAA

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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The NET Detectives

The NET Detectives

The NET Detectives is an awareness post.Detecting NETsIn 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 the investigation,…
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RonnyAllan.NET – a review of 2022

RonnyAllan.NET – a review of 2022

ReviewIn 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 but much…
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Neuroendocrine Cancer:  Those who know, know!

Neuroendocrine Cancer: Those who know, know!

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions…
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Neuroendocrine Cancer:  Beware But Be Aware

Neuroendocrine Cancer: Beware But Be Aware

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

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

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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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!

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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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

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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Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Small Intestine Neuroendocrine Tumours (SI NET) are one of the most common types of Neuroendocrine Cancer, and also one of the most challenging to diagnose and then treat. Patients can have a very good outlook even when presenting with metastatic disease.  However, it's true to say that some NET centres of excellence (CoE) or multi-disciplinary team (MDT) see a lot of SI NET patients have built up considerable experience in treating them, including the use of surgery.  The surgical challenges are such that a surgeon not experienced in treating these cases may shy away or think they are inoperable, whereas…
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Every picture tells a story (point, click, read)

Every picture tells a story (point, click, read)

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text.  This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, 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),…
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Neuroendocrine Cancer – I didn’t hear it coming

Neuroendocrine Cancer – I didn’t hear it coming

A Neuroendocrine Cancer awareness post by 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. Certain types of Neuroendocrine Tumours (NETs) are in this difficult to diagnose category due to the vague symptoms which may be mistaken for other diseases and routine illnesses.  However, in many cases which don't seem to make the statistics, it can be incredibly quiet leading to incidental diagnosis including at an advanced stage. It's SNEAKY! Every year the advocacy organisations push out skewed…
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Early diagnosis of late stage cancer!

Early diagnosis of late stage cancer!

OPINION: What a strange title for a cancer blog post!   However, what a strange cancer I have.  Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor.  To cut a long story short, you can read about me here."The cancer has been growing for years"One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in most cases. I'm fairly certain my surgeon…
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Serotonin – it’s a no-brainer!

Serotonin – it’s a no-brainer!

OPINIONThere is constant discussion about the effects of serotonin-producing tumours and issues of depression, anxiety, and 'rage'. However, it's a really complex issue for laypeople and I have no intention of trying to resolve it in this article. However, it's clear to me from listening and reading these discussions in patient forums for many years, that most of the discussion appears to be based on years of unsubstantiated and unmoderated debate inside patient forums without professional input.  This is not an attempt to bash patient leaders and forum administrators, because a full understanding of these issues needs a much wider…
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The NETest® – a Chromogranin A replacement and more?

The NETest® – a Chromogranin A replacement and more?

Update 20th Aug 2023.NEW YORK – Wren Laboratories announced Thursday that it finalized a distribution agreement with Kindstar Globalgene Technology to distribute Wren's blood-based neuroendocrine tumor NETest throughout China. Click the link below. https://wrenlaboratories.com/netest-expanded-to-china/Tumour Markers GeneralFor some years the gold standard tumour marker for Neuroendocrine Neoplasms (NENs) has been and remains today, Chromogranin A (and for certain scenarios Chromogranin B and C can provide some additional clues).  Pancreastatin, which is actually a molecule of Chromogranin A, is another marker touted but appears to be limited to USA. Its main advantage is the ability to better handle the effects of Proton Pump…
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“Please find something wrong with me”

“Please find something wrong with me”

I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common…
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Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials – PEN-221 for Neuroendocrine Cancer

What is PEN-221?Tarveda Therapeutics is discovering and developing a new class of potent and selective precision oncology medicines for the treatment of patients with various solid tumor malignancies. Their strategy includes developing their own proprietary Pentarin miniature conjugates to enhance the effectiveness of promising anti-cancer payloads that have struggled without their selective targeting to solid tumors.  These medicines are known as 'Pentarins'. PEN-221 is the lead candidate 'Pentarin' aimed at Neuroendocrine Cancer - PEN-221.Somatostatin receptor 2 (SSTR2) is frequently overexpressed on several types of solid tumors, including neuroendocrine tumors and small-cell lung cancer. Peptide agonists of SSTR2 are rapidly internalized…
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Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

What is ONC201?A company called Oncoceutics is developing a novel class of safe and effective cancer therapies called imipridones. Imipridones have a unique three-ring core structure and selectively target G protein-coupled receptors (GPCRs), the largest class of membrane receptors and a common target of approved drugs that are underexploited in oncology. Despite being historically uncommon as targets in oncology, GPCRs control an array of critical prosurvival and stress signaling pathways that are often dysregulated in human cancer to favor cancer cell survival and propagation.The ability of imipridones to target GPCRs with a high degree of selectivity represents a novel opportunity…
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Surufatinib for Neuroendocrine Cancer

Surufatinib for Neuroendocrine Cancer

UPDATE 2nd May 2022. US FDA did not approve. Commentary from Healthcare New company Global Data. "On 2 May, the US Food and Drug Administration (FDA) rejected HUTCHMED’s new drug application (NDA) for its lead candidate, Sulanda (surufatinib), for the treatment of advanced neuroendocrine tumours (NETs). Issues pertaining to trial populations were raised in a complete response letter (CRL) and GlobalData expects this case to have wide implications for the whole field of oncology therapeutics. China-based HUTCHMED received approval for its multi-receptor tyrosine kinase inhibitor Sulanda in China for the treatment of pancreatic and extra-pancreatic NETs in June last year…
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Neuroendocrine Cancer: No one gets it until they get it!

Neuroendocrine Cancer: No one gets it until they get it!

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions to…
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Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

What are Proton pump inhibitors (PPIs)?Proton pump inhibitors (PPIs) are among the most commonly used medications in the world. They reduce the production of acid by blocking the enzyme in the wall of the stomach that produces acid. Acid is necessary for the formation of most ulcers in the oesophagus, stomach, and duodenum, and the reduction of acid with PPIs prevents ulcers and allows any ulcers that exist in the oesophagus, stomach, and duodenum to heal. PPIs are prescribed to treat acid-related conditions such as:Esophageal, duodenal and stomach ulcersNSAID-associated ulcerUlcersGastroesophageal reflux disease (GERD)Zollinger-Ellison Syndrome - ZES (note this is a…
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Neuroendocrine Cancer: a needle in a haystack?

Neuroendocrine Cancer: a needle in a haystack?

Reviewed and edited 16th July 2023It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017 and also in many other places), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.Neuroendocrine Cancer is a heterogenous group of cancers…
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Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the Neuroendocrine Type". Her death certificate quoted "Pancreatic Neuroendocrine Cancer". Despite this, the media outlet that published her death certificate still led the article with the headline "Pancreatic Cancer". Exactly the same thing happened…
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Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer

Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer

Edit 21st January 2021. The imaging time window of 64Cu-DOTATATE positron emission tomography/computed tomography (PET/CT) for patients with neuroendocrine neoplasms can be expanded from one hour to three hours post-injection, according to new research published in the January 2021 issue of The Journal of Nuclear Medicine.  Read more hereEdit 4th September 2020.  64Cu-dotatate now named Detectnet™ is approved for use by US FDA. Majority read revealed Detectnet had over 98% accuracy, 100% sensitivity, and over 96% specificity to confirm or exclude presence of disease. Read more here. Edit 14th July 2020.  Expanded Access Program via clinical trial now recruiting - see below.  The…
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Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

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

“What are you doing this afternoon”

On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy.  I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, I wasn't actually ill Rewind two months, I had…
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Sapanisertib – a drug on trial for Neuroendocrine Tumors (NET) with a pancreatic primary

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

Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body. What is Sapanisertib? Sapanisertib is one of a group of targeted therapy drugs that interferes with tumor progression by inhibiting an enzyme known as mTOR which a tumor cell needs for growth.  In fact this is the same technique used in Afinitor (Everolimus), already approved for NETs. It is also being tested in a number of different advanced cancers, including bladder, kidney, breast,…
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Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Diarrhea is a huge subject for NET patients, whether it's caused by the tumour itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life.  Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer - the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate.  I don't normally write articles on over the counter commercial products but this one is an exception…
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RonnyAllan.NET – Community Newsletter January 2018

RonnyAllan.NET – Community Newsletter January 2018

A great start to the year in both NETs in the news and my social media activity.  Of course the headline is the US FDA approval of Lutathera (Lu-177) - i.e. PRRT I caught this news in my social media NET FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I'm very pleased for my USA friends but we mustn't forget it's also required in so many other places.  Help me populate locations in my live article on  PRRT click here. NET Epidemiology continues to be discussed and (yet) another well known…
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Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

After 7 years of avoiding pancreatic enzyme replacement therapy (PERT) since diagnosis, I finally asked for some on a trial basis at the end of 2017.  To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs).  I've always known I've had some digestive issues related to malabsorption. However, I'm not losing weight - this has been stable for some years (but see below).  Plus, my key vitamin levels (B12 and D) were in range.  However, I had been struggling with a lot of bloating issues, thus the trial. …
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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?

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 to…
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NETwork with Ronny © – Community Newsletter DECEMBER 2017

NETwork with Ronny © – Community Newsletter DECEMBER 2017

6 HAPPY NEW YEAR and welcome to Ronny Allan's Community newsletter for December 2017. A quieter month due to the holiday season in the latter half.  I was generally quieter in the first half too, maybe that's a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month. At the end of 2017, I've been reflecting on the amazing support from you guys.  I'm a bit 'discombobulated' but also proud to see that I've had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure.  It seems almost impossible…
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Update:  Management of Neuroendocrine Tumors

Update: Management of Neuroendocrine Tumors

This is an excellent and positive video based overview of where we are with the Management of NETs.  This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference.  This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too!  I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains…
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NETwork with Ronny © – Community Newsletter NOVEMBER 2017

NETwork with Ronny © – Community Newsletter NOVEMBER 2017

Welcome to Ronny Allan's Community newsletter for November 2017. A very strong beginning of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so…
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NETwork with Ronny © – Community Newsletter OCTOBER 2017

NETwork with Ronny © – Community Newsletter OCTOBER 2017

Hi NETworkers! Welcome to Ronny Allan's Community newsletter for October 2017.  A very strong end of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site.  I suspect the number of shares will never be beaten (652 in 36 hours).  31 Oct 2017 is now the biggest number of views on any one day, breaking the previous record set in Jan 2017.  It also made October 2017 the highest monthly views…
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Opinion: Neuroendocrine Cancer – Can it be cured?

Opinion: Neuroendocrine Cancer – Can it be cured?

OPINION:"Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions. But…
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Weight – the NET Effect

Weight – the NET Effect

Firstly, let me say that I have no intention of advising you how to lose or gain weight!  Rather, I'd like to discuss what factors might be involved and why people with NETs might lose or gain weight either at diagnosis or after treatment.  Clearly, I can talk freely about my own experience and associated weight issues. If nothing else, it might help some in thinking about what is causing their own weight issues.I once wrote a patient story for an organisation and the headline was "Did you mean to lose weight".  Those were actually the words a nurse said…
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Cancer Isn’t All About Me

Cancer Isn’t All About Me

click picture to read "My Right-Hand Woman" Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is…
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NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest:   The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.   The European Commission approved the use of XERMELO (telotristat ethyl) for use…
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Ever wonder what caused your Neuroendocrine Cancer?

Ever wonder what caused your Neuroendocrine Cancer?

OPINION.  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…
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Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

Background When you look at how cancer is classified and broken down, you can see why Neuroendocrine Neoplasm (the overarching term for Neuroendocrine Tumour and Neuroendocrine Carcinoma) often appears unlisted in certain websites and in certain clinical publications and press releases.  Moreover, it robs awareness and funding for Neuroendocrine Cancer organisations, particularly when celebrities are involved in incorrect labelling. Below, I wanted to cover why that sometimes happens but also why that is undeservedly detrimental to Neuroendocrine Cancer awareness. Cancer Categories From a histological standpoint, there are hundreds of different cancers, which are grouped into six major categories: Carcinoma Sarcoma…
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NETwork with Ronny © – Community Newsletter AUGUST 2017

NETwork with Ronny © – Community Newsletter AUGUST 2017

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is August 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here. However, in UK, there is a threat that PRRT won't be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond…
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The Invisible NET Patient Population 

The Invisible NET Patient Population 

OPINIONI found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting.  The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you want to understand the factors behind this massive increase, I covered this extensively in my post "Neuroendocrine…
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