This topic comes up regularly on patient forums, twitter, Facebook….. in fact everywhere! Personally, I don’t tend to get too excited about it, although there can be extremes. Most people (not all) are just stumped to know exactly what to say. Even as a person with cancer, I sometimes feel awkward when faced with someone I […]
Update January 2024 Dr Rodney Pommier, a NET specialist surgeon in Oregon has been writing about the issue of carcinoid crisis for some years and has finally produced data which turns previous guidelines on their head. Clearly when it comes to (so called) carcinoid crisis, surgeons are at the sharp end of experience alongside their […]
There can be no doubt that the discovery of somatostatin receptors as a means to treat Neuroendocrine Tumours has been a huge success. Additionally, scientists looked at a theranostic angle and provided somatostatin receptor based imaging for diagnosis and surveillance purposes. Many patients are prescribed somatostatin anlaogues shortly after diagnosis and this has led to […]
Author’s comment My ‘Spotlight’ on Carcinoid Syndrome may be easier reading for some but for those who wanted to dive into NET Specialist authored guidelines, this set from ENETS will be of use. Scope. Carcinoid Syndrome (CS) and Carcinoid Heart Disease (CHD) formally known as Hedinger Syndrome) are related in that the latter is a […]
UPDATE – January 19th, 2024. Novartis Lutathera® significantly reduced risk of disease progression or death by 72% as first-line treatment for patients with advanced gastroenteropancreatic neuroendocrine tumors – Novartis radioligand therapy Lutathera® demonstrated statistically significant and clinically meaningful progression-free survival in first line advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs) In the Phase III NETTER-2 trial, Lutathera […]
What is SWOG S2104? A Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide Versus Observation in High-Risk Pancreatic Neuroendocrine Tumors Pancreatic neuroendocrine tumors (pNETS) account for about 1-2% of all the pancreas tumors for which resection is the only curative intent modality, however, despite surgery, many patients will experience recurrence. Tumor size, positive […]
Breaking News. We have generic somatostatin analogues, generic targeted therapy, and I guess it was only a matter of time until we got generic PRRT (Radioligand Therapy) e.g. generic Lutetium Lu 177 dotatate. This news begins that process which is also based on a clinical trial which took place in Canada (195 participants) and which […]
13 Christmas celebrations since diagnosis. A thankful statement My Facebook memories today are full of Christmas day activities including my first Christmas after diagnosis and major surgery in 2010. I remember the whole of my own family attended, my son and daughter’s families and 3 grandsons (I now have 4 💜). The main thing I […]
When covid-19 first hit the scenes early 2020, it was a bit of a shock, a bit of a worry, but most people (including yours truly) thought it would be over in a few months. So it was a bit of a shock when I tested positive in Dec 2023 shortly after getting back from […]
Review In 2023, I managed to push beyond the 2022 totals, that was a major boost for me given December was a write off due to illnes. To be honest, I’m still flabbergasted by reaching one million views in 2018, and then reach 2 million in December 2020. I’m a third of the way to […]
December is always quieter than other months for obovus reasions, although I do try to maintain normality. The month started well and then turned into an absolute disaster. A death in the family followed by my second Covid-19 infection and at the time of writing, although now testing negative, I am still strugging with what […]
Covent Garden Market London Dec 2023 – Background to 2023 I’ve only ever sent these on Facebook but since last year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter, Facebook, Newsletter or direct from a subscription to my website. All of […]
SAN DIEGO, Dec. 18, 2023 (GLOBE NEWSWIRE) — Crinetics Pharmaceuticals, Inc. (Nasdaq: CRNX) today announced positive initial findings from its ongoing open-label Phase 2 carcinoid syndrome (CS) study of paltusotine, an oral, once-daily investigational compound being developed for the treatment of acromegaly and CS. “We are very encouraged by these strong initial findings in our […]
What is the gut microbiome? According to Cleveland Clinic, your gut microbiome is a microscopic world within the world of your larger body. The trillions of microorganisms that live there affect each other and their environment in various ways. They also appear to influence many aspects of your overall health, both within your digestive system […]
A culture of miniature neuroendocrine tumors. [Talya Dayton, copyright: Hubrecht Institute.] I’ll flesh this out in due course, but this is something I’d like to track. Pulmonary NETs don’t have as many treatments as Gastroenteropancreatic NETs (GEP NETs). Druggable growth dependencies and tumor evolution analysis in patient-derived organoids of neuroendocrine neoplasms from multiple body sites […]
If you read any authoritative source on this cancer, it will normally begin with “Neuroendocrine Neoplasms (NENs) are heterogeneous tumours ………….”. The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of […]
What is Carcinoid Syndrome? Carcinoid syndrome (CS) is the most frequent hormonal complication accompanying neuroendocrine neoplasms (NENs) and is defined by chronic diarrhoea and/or flushing in the presence of systemic elevated levels of serotonin or its metabolite 5-hydroxyindolacetic acid (5-HIAA). Importantly, other causes of these symptoms should be considered and investigated depending on the clinical presentation. CS […]
US Trial I was delighted to see this clinical trial which looks at the efficacy of PRRT (Lu177 dotatate) vs the efficacy of Everolimus (Afinitor). The latter is approved for the treatment of adult patients with progressive, well-differentiated non-functional, neuroendocrine tumors (NET) of gastrointestinal (GI) or lung origin with unresectable, locally advanced or metastatic disease […]
Since I started blogging, I’ve read dozens of articles on the subject of ‘cancer metaphors’ and in particular their use in describing cancer experiences with the words ‘fight’, ‘battle’ and other ‘military’ sounding terms. The authors say that perhaps this is not the best language to use. One author used the term ‘violence’ to describe these […]
November is always busier as I help spread awareness for 10th Nov (remembering that every day is 10th Nov on my site!). I also managed to push out quite a few blogs, some ‘remasters’ from 2014 but with their originality from that time. Others include the ENETS Guideline series, a work in progress. I’m thankful […]
This ENETS guidance paper, developed by a multidisciplinary working group, provides up-to-date and practical advice on the diagnosis and management of digestive neuroendocrine carcinoma, based on recent developments and study results. These recommendations aim to pave the road for more standardized care for our patients resulting in improved outcomes. However, it’s true to say that […]
One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it’s a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after. Neuroendocrine Cancer can often be uncannily […]
When I first created my blog in April 2014, I had to find some material to lead up to my 84 mile walk (at the time, it was a temporary vehicle for the single purpose of raising money for charity). An idea I had probably led to the longer term survival of this blog after […]
Laughter is important. This is a remastered version of one of my early blog posts. It centred on a ‘get-well’ card I received recuperating in hospital after my first major surgery. The person who sent it knew I had a sense of humour, and it did make me smile. My surgeon’s secretary came to visit […]
The ENETS 2023 guideline for gNETs are combined with the guidelines for Duodenal NET (dNET) due to their close relationship in anatomical terms. Gastric neuroendocrine neoplasms (gNENs) are tumours with an increasing annual incidence and. The vast majority of gNENs are well-differentiated neuroendrocrine tumours (NETs), which are usually classified according to the background gastric pathology […]
The ENETS 2023 guideline for dNETs are combined with the guidelines for Gastric NET (gNET) due to their close relationship in anatomical terms. But there are functional linkages to the pancreas, therefore also links to that as above. The duodenum is technically part of the small intestine, and you can find that in most anatomy-based […]
1 year after 2 x surgery Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after surgery 13 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 […]
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, […]
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jennifer Eads talks about the tricky issue of when Genetic Testing Be Performed in […]
The Journey to the Hospital on 8th November didn’t go smoothly! I had to be admitted to hospital for my surgery on 8th Nov 2010, but the surgery was not taking place until 9th November. The technical reason for that is explained further below. Not a good start, 13 years ago today, Chris was driving […]
I’m sorry to hear that you have been diagnosed with Neuroendocrine Cancer. It’s normal to feel scared, angry, or sad when dealing with such a difficult situation. However, there are some ways to cope with these emotions and find some hope and optimism. Here are some tips that may help you think more positively during […]
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jonathan Strosberg is another favourite of mine, not only because he is a prodigious […]
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. “Dr Thor” is a favourite of mine. Worth pointing out that Dr Thor is giving […]
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Jonathan Strosberg MD from Moffitt Cancer Center Florida Jennifer Eads MD from University of Pennsylvania, […]
I thought this series might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Jonathan Strosberg MD from Moffitt Cancer Center Florida Jennifer Eads MD from University of Pennsylvania, Abramson Cancer Center Thorvadur R. Halfdanarson […]
October was a strange month, due to a combination of holiday recovery from September and terrible weather in UK, I managed to push out quite a few blogs, many ‘remasters’ from 2014 but with their originality from that time. I’m thankful to those who supported these posts, some of which will no doubt appear below. […]
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 […]
There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places. In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009. But underneath that are some […]
There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places. In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009. But underneath that are some […]
Opinion: In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn’t really do that much for me. Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery. Read about this here – I even […]
Remastered 24th Oct 2023 Original Blog 6th Sep 2014 (but talking in public about my 2010 experiences). Despite people’s expectations, diagnosing Cancer isn’t a two-minute job. There is a whole host of stuff to consider, and medical staff clearly want to get it 100% correct in order to plan and manage the patient’s treatment. I […]
ORIGINAL POST (20th May 2014) I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away. I didn’t really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken […]
This title is a bit ‘tongue in cheek’ (….did you see what I did there?) I’m very happy to have had treatments for my stage IV cancer, I can think of far worse scenarios. When I was first diagnosed, the dreaded word ‘Chemo‘ was discussed. Actually, Chemo isn’t particularly effective in treating low grade Neuroendocrine […]
Exercise is a free prescription. Clearly, I need to be careful with that statement given my aversion for cancer myths but it was once prescribed to me to get me through an awful period in 2013. The vast majority of doctors will tell you exercise is good for us but like me they must realise […]
My very first blog post – ‘remastered’ in 2023! The original post as I published it on 29 Apr 2014 This is a new skill so bear with me, please! The aim of this blog is to post a running commentary of a walk of Hadrian’s Wall with my wife Chris. The walk commences 26 May […]
When I launched my blog with the sole aim of fundraising for a walk along Hadrian’s Wall, the first couple of posts I published were all about why Chris and I were doing this 84-mile walk. After that, it suddenly got difficult. I then had a brainwave ….. let’s do an A to Z and […]
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 […]
Please read this before asking questions Histotripsy is a new treatment, but it’s an ablative technique rather than a drug. It can be equated to liver embolization or conventional tumour ablation but uses what would appear to be a more effective targeted therapy. It’s early days, the fact that it has been approved by FDA […]
I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (you should’ve seen the other guy). Bar the odd mandatory injection, I avoided both boxing and nurses for many years after that. But now […]
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 […]
