Ronny Allan – Living with Neuroendocrine Cancer – Ronny Allan's International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping patients and their advocates

18Apr 2024 by Ronny Allan 24 Comments

Neuroendocrine Cancer Online Forums: frighteningly good or good at frightening?

OPINION When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'. I found it quite 'cliquey' and I should have listened to the initial advice of that fellow patient! So, I left it after the reigning clique found I didn't want to be part of their pity party. p.s. by "Forums", I mean any online group. Joining forums/online patient groups In 2013/14, I joined several large Facebook closed groups which…

16Apr 2024 by Ronny Allan 19 Comments

Colonoscopy Comedy

Humour, Living with Neuroendocrine Cancer

Last year I wrote a series of articles on the 'coping' side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I've had, I sometimes have a little laugh even although I wasn't laughing at the time! My favourite 'treatment laugh' is the 'suppository story' which occurred in hospital shortly after my first major surgery - it wasn't funny at the time, but I smile when I think back to it. On a similar subject, I had a colonoscopy around 21 months prior to my actual Neuroendocrine Cancer diagnosis. Like the guy in…

15Apr 2024 by Ronny Allan 8 Comments

Surgery – the gift that keeps on giving

Survivorship, Treatment

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 removing or destroying disseminated tumour metastases'. Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome which was affecting…

14Apr 2024 by Ronny Allan No Comments

Piss off cancer, it’s 13 years since my liver surgery!

Patient Advocacy, Survivorship, Treatment

I'm still here 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 listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention, didn’t have a much grander announcement than the one presented to me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if a much…

12Apr 2024 by Ronny Allan 10 Comments

Chocolate – the NET effect

Diet and Nutrition, Humour, The NET Effect Series

I've always had a 'sweet tooth' and the softer the sweet the better - toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts, 'tablet' and macaroon bars (both from Scotland), are all on my list of favourites. In terms of desserts, I love those too - ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn't complete without a biscuit (or three....).Don't get me wrong, I'm not stuffing my face with sweet stuff 24/7, however I do need my sugar 'fix' now and then. I'm not a large person, I'm small 'framed' and although I was starting to look a bit 'chubby' early 2010, my Neuroendocrine Cancer diagnosis and subsequent treatment took care of that. My weight is…

10Apr 2024 by Ronny Allan 1 Comment

A Phase 2 Open Label Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive NETs

Clinical Trials and Research

Update 12th January 2024 FDA Grants Breakthrough Therapy Designation to AlphaMedix for Gastroenteropancreatic Neuroendocrine Tumors (Lung and other Non-GEPNETs - see author's comments below) The FDA has granted breakthrough therapy designation to AlphaMedix (212Pb-DOTAMTATE) for the treatment of adult patients with unresectable or metastatic, progressive somatostatin receptor (SSTR)–expressing gastroenteropancreatic neuroendocrine tumors (GEP-NETs) who have not previously received peptide receptor radioligand therapy (PRRT). AlphaMedix represents the first Targeted Alpha Therapy to receive this designation. Breakthrough Therapy designation is a process designed to expedite the development and review of drugs that are intended to treat a serious condition and preliminary clinical evidence indicates that the drug may demonstrate substantial improvement over available therapy on a clinically significant endpoint(s). The decision is based on findings from phase 1 and ongoing phase 2…

01Apr 2024 by Ronny Allan No Comments

A Review of March 2024 on RonnyAllan.NET

Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship

I'm thankful to the loyal supporters on my blog site and the other social media sites day and night (and I do note some doing both!). I really am very grateful. You know who you are - take a bow! Here is my monthly summary of what we all achieved in March 2024. Something new, something blue and some borrowed too! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. 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…

31Mar 2024 by Ronny Allan No Comments

From Whipple to Waikiki by Jerry Chezick. Surf’s up!

Inspiration

An essay by Jerry CrezickJerry is a Pancreatic Neuroendocrine Tumor (NET) patient recovering after a Whipple operation carreid out early 2022. He soon realised he had a big challenge on his hands. Read his story of recovery helped by learning to surf! First posted in my private Facebook patient support group. Gerry kindly agreed to let me post here. Honest, open and inspiring stuff"Finally I realized, I had to become the World Expert on MY Body"I've recently passed the 2-year anniversary of my Whipple.About 9 months before, I experienced a total knee replacement and figured, if I could endure that pain, I would be able to handle a W. Obviously, I didn't have a clue.The W. was crazy difficult. In the scheme of things, I probably did worse than most.There…

29Mar 2024 by Ronny Allan 1 Comment

Diagnosed with Neuroendocrine Tumours: Hurry up and wait

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when physician work within a NET structure, other doctors can be involved and rushing into a lone person decision sometimes has adverse effects. I'm quite happy and content they took their…

26Mar 2024 by Ronny Allan 2 Comments

Tick off that bucket list

Inspiration, Patient Advocacy

In 2002, I was reading a Sunday newspaper and found myself drawn to an article about hiking the 2000 year old Hadrian's Wall. The walk along Hadrian’s Wall Path is an 84 mile (135 Km) National Trail stretching coast to coast across northern England, from Wallsend, Newcastle upon Tyne in the east to Bowness-on-Solway on the west coast. It generally follows the line of Hadrian’s Wall, along the way passing through some of the most beautiful parts of northern England – from rolling fields and rugged moorland to the vibrant cities of Newcastle and Carlisle. As someone interested in history, this was another attraction for me given the purposes for which the wall was built. Hadrian’s Wall was actually the north-west frontier of the Roman empire for nearly 300 years.…

25Mar 2024 by Ronny Allan 3 Comments

Four years on

Awareness, Inspiration

Edit 2024: One of my early posts was entitled "Four years on". I guess I was starting to recognise 'cancerversaries', perhaps realising I might get throuh the ordeal, or at least for longer than I thought. 2014 was also the year I retired after working since the age of 16! My first task was to walk the 84 miles of Hadrian's Wall. Then at year 5 (2015), I started the "I'm still here" series of posts and took it from there. Original Text from 26th July 2014. On Saturday, I glanced at the calendar on my phone and recognised the date as some sort of anniversary - 26 July. It was exactly 4 years to the day I received my diagnosis of Metastatic Neuroendocrine Cancer.It all began 2 months previously with a…

23Mar 2024 by Ronny Allan 32 Comments

The Human Anatomy of Neuroendocrine Cancer

Awareness

OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'picklist' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding. One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary can be found in the breast, NENs arise from a cell type which can be present more or less anywhere in the body. Ignorance of…

22Mar 2024 by Ronny Allan 15 Comments

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy

Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos! Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you suddenly appreciate how important they are. Hormones are involved in many conditions, not just an issue with Neuroendocrine Tumours (NETs) but the presence of over-secreting hormones (often called peptides throughout)…

20Mar 2024 by Ronny Allan 23 Comments

The trouble with the NET (Part 1) – Cancer Myths

Awareness, Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Survivorship

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 can lead to needless worry and even hinder good prevention and treatment decisions. In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey. In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news. Unfortunately, social media 'misinformation' includes 'alleged' cures for various ailments including cancer. I think we've all been there, we check twitter, Facebook, Pinterest etc…

19Mar 2024 by Ronny Allan 2 Comments

So what next?

Inspiration, Survivorship, Travel with Ronny

See the Sycamore Gap section in the post Original posts 3rd June 2014. Well we did it! Chris and I finished our 84 mile Hadrian's Wall challenge on Saturday 31 May 2014 around 1630 hours at Bowness-on-Solway. The final leg from Carlisle was listed as 14.5 miles but on our app it was more like 16 miles. We headed straight to the only pub in the village for a celebratory pint! Very happy to be finished :-)We had trained for 4 months for this challenge but it was tougher than we had imagined, particularly the effect on our feet. That's not to say the training was a waste of time, far from it. The terrain across the walk is so varied ranging from tarmac to mud (and we mean deep mud!).…

18Mar 2024 by Ronny Allan 3 Comments

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

Awareness, Patient Advocacy

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 scenario as no intervention was possible without a symptomatic patient.Neuroendocrine Neoplasms - Under-diagnosed or Under-reported?Like many other Cancers, Neuroendocrine Neoplasms (NEN) is one of a number of 'difficult to diagnose'…

17Mar 2024 by Ronny Allan No Comments

Things are not always how they seem – Part 2

Awareness

I met quite a few interesting people during my walk along the 2000 year old Hadrian's Wall 10 years ago. On Day 3, Chris and I were accompanied by our friend Dave Taylor, we noticed a couple heading up the hill that we were progressing down. We also couldn't help noticing the male of the duo was continually stopping to talk to others on the way down, and we were no exception. Interestingly, his wife kept overtaking him at these points not saying a word. He got chatting to me and Dave and we worked out he was Irish. I think his wife waited for him up the hill for around 15 minutes! We discussed where we were all from and he confirmed to Dave and I that he was…

16Mar 2024 by Ronny Allan 20 Comments

Neuroendocrine Tumours (NET) – benign vs malignant

Awareness, Patient Advocacy

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 specialist let alone a doctor who is not familiar with the disease. Going forward I'm mostly intending to use the term Neuroendocrine Tumours (NETs) as that is where the problem…

11Mar 2024 by Ronny Allan 25 Comments

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

Patient Advocacy

- 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 areas in the 2022 update, I have incorporated both in their own sections with enhancements to improve understanding. Don't be confused by the "2022" date as the major update is…

04Mar 2024 by Ronny Allan No Comments

Living with Cancer? Take a break if you need one

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

It's natural to feel low, worried or stressed when we're unwell, and someone with a long-term condition is more likely to experience mental health issues. I once read an article where it suggested that up to 40% of cancer patients suffer from varying degrees of sub-clinical depression. Caring for your mind is when you have a physical health issue can make a big difference to your overall wellbeing so it's worth making the effort to improve if applicable. I learned early on that when you live with any long term illness, getting through the day can be tough. For some it starts with trying to get a diagnosis and then dealing with that diagnosis. Undergoing treatment and then learning to recover and adapt is not a walk in the park…

01Mar 2024 by Ronny Allan No Comments

February 2024 in Review – RonnyAllan.NET

Newsletters

It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night (and I do note some doing both!). I am very grateful. You know who you are - take a bow! Here is a summary of what we all achieved in February 2024. Something new, something blue and some borrowed too! Others include the ENETS Guideline series, a work in progress. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites, we might be heading off soon!Below, I'll list the top 10 performing blog posts in February, I can assure you…

25Feb 2024 by Ronny Allan No Comments

Staging of Neuroendocrine Neoplasms (NENs)

Patient Advocacy

Stage of cancerWhat is stage? The extent of a cancer in the body. Staging is usually based on the size of the tumour, whether lymph nodes contain cancer, and whether the cancer has spread from the original site to other parts of the body.What are the stage numbers? Most types of cancer have 4 stages, numbered from 1 to 4 indicating a rising spread as the number is bigger. Some cancer have a stage 0 but I don't believe this applies to Neuroendocrine Neoplasms (NENs). Often doctors write the stage down in Roman numerals, so you may see stages written as I, II, III and IV. Wil my staging ever change? You may be given an initial staging based on physical examination, imaging tests, and biopsies of affected areas. After any…

14Feb 2024 by Ronny Allan 2 Comments

Diagnosed with Cancer? You may get a flood of sympathy and oodles of empathy but be careful with the tsunami of advice

Patient Advocacy, Ronny Allan's "The Trouble with the NET Series"

Some might think this is an odd post for someone with a massive online patient group for cancer. Well, putting aside my disclaimers, group rules about 'advice' and the strong moderation approach, I totally agree with you (thus my approach to running a group). In the past, I have written about the dangers of advice from those who mean well but in inadvertently give you not so good advice. I even wrote a critique about patient support groups in my own area of Neuroendocrine Cancer where I suggested they could be frighteningly good but also good at frightening. However, while the issues raised in this post could certainly apply to badly moderated online (and offline) patient groups. it definitely also applies beyond them, including on social media in general. Some…

12Feb 2024 by Ronny Allan No Comments

Lower grade higher stage NETs – slow motion, chronic and indolent?

Awareness, Patient Advocacy, Survivorship

Context I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a catch all for both well differentiated Neuroendocrine Tumours (NET) and poorly differeniated Neuroendocrine Carcinomas (NEC). The latter is almost always an aggressive cancer and less common than its less aggresive NET relative (when Small Cell Lung Cancer is not incuded in the math). That said, the higher grades of NET can also be quite aggresive but very often still with a better outlook than NEC. Well differentiated NETs, particularly at the lower end of the scale tend have a good outlook, even at the higher stages incuding Stage IV. Some at the lower end of stage and grade can even be removed with curative intent and patients…

06Feb 2024 by Ronny Allan No Comments

Histamine – The NET Effect

Patient Advocacy, The NET Effect Series

Histamine is mentioned a lot in both patient groups and in literature as somehow connected with NETs, particularly with so called carcinoid syndrome (CS). In fact, various putative mediators, including serotonin, catecholamines, brady- and tachykinins, kallikrein, histamine, motilin, and prostaglandins, have been suggested as potential causative factors for the symptoms and complications associated with CS (1). It is generally believed that most of these tumour-derived secretory products are inactivated by hepatocytes and, therefore, only cause symptoms when they either bypass or are secreted outside of the portal vein drainage system (1).I wanted to focus on Histamine in this article. BUT .... do not interpret anything I say as histamine being the cause of your symptoms. Nor I am saying that your histamine issues are unrelated to NET. I'll let your…

01Feb 2024 by Ronny Allan No Comments

January 2024 in review – RonnyAllan.NET – Living with Neuroendocrine Cancer

Newsletters

Welcome to 2024 once again and here is a summary of what we all achieved in January 2024. Something new, something blue and some borrowed too! Others include the ENETS Guideline series, a work in progress. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites, we might be heading off soon! It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night. I am very grateful. You know who you are - take a bow! Below, I'll list the top 10 performing blog posts in January, I can…

01Feb 2024 by Ronny Allan 4 Comments

Things not to say to someone with cancer

Inspiration, Survivorship

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 just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never met, you don't know anything about them; and they may not even speak English as a first language (those who have tried google/twitter or Facebook translator, will know it's not perfect!). I've dabbled in…

29Jan 2024 by Ronny Allan 4 Comments

Do we need a new model for Carcinoid Crisis in NETs?

Clinical Trials and Research, Treatment

Update January 2024Dr 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 anaesthetist colleagues. The detail from the study sits behind a paywall but the conclusion is given and cited below. You can read the abstract here or click on the 'conclusion' section below. I again emphasise as I have done in the original publication of this research below, nothing in guidelines has been changed. McCully, B.H., Kozuma, K., Pommier, S. et al. Comparison of Octreotide and Vasopressors as First-Line Treatment for Intraoperative Carcinoid Crisis. Ann Surg Oncol (2024). https://doi.org/10.1245/s10434-023-14876-4…

22Jan 2024 by Ronny Allan No Comments

Sequencing of Somatostatin-Receptor–Based Therapies in Neuroendocrine Tumor Patients

Patient Advocacy, Treatment

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 a reduction in the morbidity that comes from active carcinoid syndrome and has reduced the incidence of carcinoid heart disease. More recently, the introduction of somatostatin receptor based PETs, taking over from the elderly Octreotide scans, has meant speedier and higher quality identification of NETs leading to more focussed treatment. Moreover, the use of somatostatin receptor based therapy via radioligands (e.g. Ga68 PET/Cu64 PET) is nothing short of a theraputic revolution now being introduced into…

20Jan 2024 by Ronny Allan No Comments

European Neuroendocrine Tumor Society (ENETS) 2022 Guidance Paper for Carcinoid Syndrome and Carcinoid Heart Disease

A spotlight on NENs - Syndromes, Latest ENETS Guidelines

Author's commentMy '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 rare and complex cardiac complication occurring in patients with advanced NETs and CS. CS is predominantly encountered in patients with well-differentiated NETs of intestinal origin, followed by lung NETs, and only in a minority of patients with pancreatic, ovarian, thymic, or unknown origin (UKO) NETs. It follows that CHD only occurs in advanced NETs, when CS has been diagnosed, and there are normally elevated levels of 5-HIAA and NT-proBNP. Guidelines. This first ENETS guidance paper on CS aims…

19Jan 2024 by Ronny Allan No Comments

Clinical Trial – Lutathera NETTER-2 Important Update

Clinical Trials and Research, Treatment

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 plus octreotide LAR significantly extended median PFS to 22.8 months vs. 8.5 months with high-dose octreotide LAR in patients with newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs)1 What this great news means for NET patients is not yet clear, but the implications suggest a first line use of PRRT (Lutathera) in the patient populations covered in the trial. I guess any changes would need to be agreed via NET guidelines. Novartis announcement…

16Jan 2024 by Ronny Allan No Comments

Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide Versus Observation in High-Risk Pancreatic Neuroendocrine Tumors (SWOG S2104)

Clinical Trials and Research

What is SWOG S2104? A Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide Versus Observation in High-Risk Pancreatic Neuroendocrine TumorsPancreatic 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 lymph nodes and higher grade are prognostic factors for recurrence. The U.S. Neuroendocrine Tumor Study Group published a predictive score (Zaidi score but also see inclusion criteria) demonstrating that tumors with a score ≥6 had a 33% likelihood of recurrence by 24 months. Furthermore, it is known that that patients with metastatic disease who undergo curative intent resection also have a great risk of recurrence. Despite these known risk factors for recurrence, to date, no prospective…

12Jan 2024 by Ronny Allan 1 Comment

FDA Accepts New Drug Application for Generic Lutetium Lu 177 Dotatate (177Lu-PNT2003) in GEP-NETs

Clinical Trials and Research, Treatment

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 now appears to be complete. The announcement comes from US but if this is realised, you can expect it to be available in many other countries and continents where there is a market. This may even drive down prices and/or increase availability. The FDA has accepted Lantheus Holdings, Inc’s abbreviated new drug application (ANDA) for Lutetium Lu 177 Dotatate (177Lu-PNT2003), which is a generic formulation of lutetium Lu 177 dotatate (Lutathera). The treatment is indicated…

04Jan 2024 by Ronny Allan 8 Comments

Piss off cancer – 13 years of Christmas!

Awareness, Inspiration

13 Christmas celebrations since diagnosis. A thankful statementMy 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 remember was falling asleep after the dinner and I suspect it was due to post-surgical fatigue plus ongoing issues with low haemoglobin and B12. I even considered that an influx of tryptophan from the meal might be involved 😏 My Facebook memory from today 13 years ago, involves the film Avatar, known for its special effects. It had a special effect in that I saw the first 30 minutes and the last 10 minutes 😊 It…

02Jan 2024 by Ronny Allan No Comments

Me and the other big C – December 2023

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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 a trip to London. Strangely, Chris was not affected. After I tested positive, we effectively isolated each other and took precautions. Back in 2020. we both had bad colds/flu in March 2020 but we will never find out if that was covid or not. I wrote about this experience in a diary I maintained over that period. After that period and throughout all the national lockdowns, we were very careful and I still have some…

01Jan 2024 by Ronny Allan No Comments

RonnyAllan.NET – a review of 2023

Newsletters

ReviewIn 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 3 million at 1 Jan 2024. It just kinda happened, there wasn't a plan! It's mindboggling. I'm grateful for every single view though.2023 was a challenging year, mainly because the pandemic continues to have some latent impact on my social media including in terms of growth. 2020 and 2021 were slower than normal, then 2022 saw some pickup, ditto on 2023 but slower then I would have liked despite writing more this year. I can't blame less…

29Dec 2023 by Ronny Allan No Comments

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

Newsletters

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 feels like a regular and lingering chest infection. I'm thankful to those who supported me througout December, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites, as soon as this infection subsides, we might be heading off soon! It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog…

24Dec 2023 by Ronny Allan 4 Comments

A Christmas 2023 message from Ronny

Patient Advocacy

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 the outlets above have kept my viewing figures high, I guess I can't complain about a 2023 total of over 270,000 blog hits (so far)Like last year, another challenging year for someone with one single member of staff (me!) to run some of the biggest NET social media account groupings, while at the same time living with a stage IV cancer and all that goes with it.One of my biggest challenges was managing my private Facebook…

21Dec 2023 by Ronny Allan 5 Comments

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

Clinical Trials and Research

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 Phase 2 study of paltusotine in people with carcinoid syndrome,” said Scott Struthers, Ph.D., founder and chief executive officer of Crinetics. “These initial results show the potential of paltusotine to significantly reduce both frequency and intensity of bowel movements and flushing, the key carcinoid syndrome symptoms. Further, paltusotine was well-tolerated and the overall pharmacokinetic profile was consistent with prior studies. After completing this Phase 2 study next quarter, we anticipate sharing the results with the…

18Dec 2023 by Ronny Allan 6 Comments

Midgut neuroendocrine tumor patients have a depleted gut microbiome with a discriminative signature

Clinical Trials and Research, Patient Advocacy

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 and outside of it. If you read their summary here, you can understand some of the implications of this study. However, as the study concluded, midgut NET patients have an altered gut microbiome which could suggest a role in NET development and provide novel targets for microbiome-based diagnostics and therapeutics. Multi-center collaboration is essential in order to validate these findings and translate the outcomes to the clinical setting. Note, although the term 'midgut' is used,…

12Dec 2023 by Ronny Allan No Comments

Novel Therapeutic Target for Pulmonary Neuroendocrine Tumours Uncovered

Clinical Trials and Research

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). Thanks for reading. Druggable growth dependencies and tumor evolution analysis in patient-derived organoids of neuroendocrine neoplasms from multiple body sites Talya L. Dayton Nicolas Alcala Laura Moonen Matthieu Foll Lynnette Fernández-Cuesta Hans Clevers Show all authors Show footnotes Open AccessDOI: https://doi.org/10.1016/j.ccell.2023.11.007Quick summary - click here 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…

11Dec 2023 by Ronny Allan No Comments

There are no perfect answers about an imperfect cancer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............". The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy.This represents a challenge for regular healthcare professionals but also for Neuroendocrine Neoplasm specialists who are answering many questions asked by patients and their loved ones on a daily basis. I very much suspect this challenge is the same for many types of primary cancers located in a single organ, let alone a type of cancer that can potentially appear as a primary at cellular level in almost every organ or part of…

03Dec 2023 by Ronny Allan No Comments

A Spotlight on NET Syndromes – Carcinoid Syndrome

A spotlight on NENs, A spotlight on NENs - Syndromes

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 is predominantly encountered in patients with well-differentiated NENs (neuroendocrine tumours, NETs) of intestinal origin, followed by lung NETs, and only in a minority of patients with pancreatic, ovarian, thymic, or unknown origin NETs. The main symptoms defining CS are skin flushing, secretory diarrhoea, bronchospasm, or abdominal pain (in some cases of advanced intestinal NETs) in the presence of systemically elevated levels of serotonin and/or other biologically active amins and peptides. Patients with CS suffer from…

02Dec 2023 by Ronny Allan 2 Comments

Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus

Clinical Trials and Research

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 (US FDA wording, Europe is similar). What is this trial? This phase II trial studies the effect of lutetium Lu 177 dotatate compared to the usual treatment (everolimus) in treating patients with somatostatin receptor positive bronchial neuroendocrine tumors that have spread to other places in the body (advanced). Radioactive drugs, such as lutetium Lu 177 dotatate, may carry radiation directly to tumor cells and may reduce harm to normal cells. Lutetium Lu 177 dotatate may…

02Dec 2023 by Ronny Allan 15 Comments

Opinion: Let’s attack Cancer metaphors

Patient Advocacy, Survivorship

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 type of metaphors. A ridiculous misrepresentation of the metaphor in my opinion. Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use. I don't like Cancer - it attacked me, it attacked my family, it attacked others I know, it has killed people I know....... it has killed millions of people and changed many lives. I'm 'fighting' Cancer. I'm in a 'battle' with Cancer. But I…

30Nov 2023 by Ronny Allan No Comments

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

Newsletters

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 to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites, we might be heading off in the snow soon! It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night. I am very grateful. Below, I'll…

29Nov 2023 by Ronny Allan No Comments

European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Digestive Neuroendocrine Carcinoma

Latest ENETS Guidelines

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 the prognosis for differentiated Neuroendocrine Carcinomas (NEC) is generally poorer than the less aggressive Neuroendocrine Tumours (NET).Surgery can be of benefit for localized disease after extensive preoperative imaging. Carboplatin in combination with etoposide is recommended as first-line treatment for metastatic disease. Irinotecan with fluoropyrimidines has the best evidence as second-line treatment. Immunotherapy plays a minor role in biomarker-unselected patients. Molecular profiling if available is encouraged to identify new targets. More prospective clinical trials are highly…

20Nov 2023 by Ronny Allan No Comments

Neuroendocrine Cancer – Clinical Esoterica

Awareness

One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, weight loss, weight gain, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood pressure.…

19Nov 2023 by Ronny Allan 1 Comment

Neuroendocrine Cancer – The F Words

Patient Advocacy

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 people quite liked the descriptions of well known words used in NET parlance. I managed this using an A to Z list over approximately 26 days which was perfect for my timeline. I gradually renamed those early blog posts and I just noticed that the "F words" survived and this is a remaster! Enjoy the F words, I'm sure we have all used them many times 🤬😊 Flushing In early 2010, I had been experiencing…

17Nov 2023 by Ronny Allan 2 Comments

Laughter is the best medicine

Humour

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 me, and I invited her to check out my cards....... she fell about on the floor laughing! That caused me to laugh (carefully!). All the nurses looking after me had a good laugh too! How many times have you heard it said that laughter is the best medicine? I can certainly remember this phrase being said when I was a child. But it's much older than the 1960's, apparently humour was introduced as a viable medical option…