Ronny Allan - Ronny Allan - Living with Neuroendocrine Cancer

24Mar 2023 by Ronny Allan No Comments

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

What is TraceNETTM TraceNETTM is a a novel copper-based 'radiodiagnostic' for detecting neuroendocrine tumours (NET). The PET imaging agent candidate is the diagnostic component of NUCLIDIUM’s theranostic program, which comprises a true theranostic pair for diagnosing and treating NET patients, leveraging the company’s unique copper-based approach. The Phase 1 program for the diagnostic is the first step in its clinical development and is planned to commence in the first half of 2023. Nuclidium’s TraceNETTM program aims to overcome key limitations of existing radiodiagnostics and their corresponding therapeutics by increasing the sensitivity and diagnostic accuracy of NET imaging, including detecting metastases, while reducing the radiation burden for the patient. The TraceNETTM diagnostic consists of an imaging radioisotope (61Cu) and a somatostatin receptor (SSTR) antagonist-targeting molecule that binds with high affinity and specificity to…

16Mar 2023 by Ronny Allan No Comments

Experimental drug for Gastric NET – Netazepide

Clinical Trials, Treatment

Gastric NETs When I wrote my post entitled "Spotlight on Gastric Neuroendocrine Neoplasms", I explained what these were with some emphasis on the association with hypergastrinemia (elevated fasting serum gastrin levels) with Type 1 and 2 gNETs being differentiated by the settings in which this occurs. This oversecretion is not the same as so called carcinoid syndrome found in other gastrointestinal NETs. Many people with a Gastric NET will already have acid reflux related issues and many will be taking medications such as proton pump inhibitors. But I was surprised to find there was not an approved targeted medication that aims to decrease gastrin levels. It's true to say that somatostatin analogues (SSA) inhibit the secretion of many NET associated hormones including gastrin but SSAs are not routinely prescribed for…

12Mar 2023 by Ronny Allan No Comments

A Newsletter from RonnyAllan.NET – 13th March 2023

Awareness, Newsletters

Newsletter from Ronny Allan - 13th March 2023 Welcome to my new template newsletter compiled using WordPress (my blog app). This is the 2nd in this format, and I will continue in the absence of a Newsletter app that meets my needs. It's been another busy month as you will see below. But please take the time to read through as I can almost guarantee there will be something you missed and want to read and share! Some of the items below will make you laugh but others may make you cry. Latest Blog Posts My award-winning blog is central to everything I do, without it, there is no Facebook, twitter or private group. It follows that supporting my blog is also supporting those other outlets. The widget below displays…

10Mar 2023 by Ronny Allan No Comments

Fructose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy

Background When I cast my mind back to my very first surgery, I remember all sorts of 'plumbing' issues but was told it would take a while for my adjusted plumbing to repair and do its work once more. It's not gone fully back to normal, but I accept minor side effects of getting rid of cancer (metastatic with small intestine NET primary). My diet is slightly different nowadays as I endeavour to return to that normality, and I have a good handle on what makes me move faster AND slower. Constipation is not good either, so I try to find a middle ground. I started taking pancreatic enzyme replacement therapy in 2018 and often use that to offset a meal containing more fat than other meals, similar reducing dosages for lower fat…

09Mar 2023 by Ronny Allan 1 Comment

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials, Inspiration

It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that. But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease. There are others but I find these are the most common scenarios I see in younger people. For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to write about one of the latter scenarios, a younger than average person with an aggressive version of our disease and one that eventually was the cause of her death. It…

05Mar 2023 by Ronny Allan No Comments

Treatment for Neuroendocrine Cancer: Beware of the alternatives

Clinical Trials, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say. I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to claim that conventional treatments are ’toxic’ while their favoured treatment is ‘natural’, implying that natural is somehow better. In analysis, that is a fallacy. It’s easy to get sucked into…

04Mar 2023 by Ronny Allan No Comments

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

Newsletters, Patient Advocacy

Summary Another great start to 2023 and I thank those who continue to support my social media and this blog. I’m keen to hear any suggestions of the sort of thing you would like me to research and publish. I am working on two or three more blog posts due to come in in the next 10 days, please stay tuned. The top 10 most-read posts in February are listed below: Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes) This is not a surprise, it's one of my top 6 ever but it got a good read last month. It's the first thing people should ask at diagnosis. If this floats your boat - Click here or on the picture. [caption id="attachment_31312" align="aligncenter" width="640"] Click to read more[/caption]…

22Feb 2023 by Ronny Allan 2 Comments

A spotlight on Gastric Neuroendocrine Neoplasms

Awareness, Patient Advocacy, Treatment

What are Gastric NENsUnlike other anatomical types, the word Gastric is used to indicate a tumour (NET) or carcinoma (NEC) in the stomach. The stomach lies at the bottom of your oesophagus and connects to the first part of the small intestine (the duodenum). Clearly a key part of the gastrointestinal system, it processes food on its journey downwards.The stomach produces strong acid. This kills many microorganisms that might have been swallowed along with the food. It also contains special chemicals called enzymes. These are important for breaking down the food so it can be absorbed by the body. After it leaves the stomach, the partially digested food passed into the intestines where it begins to be absorbed.The main parts of the stomach are shown below (often this can give…

19Feb 2023 by Ronny Allan 6 Comments

Sometimes I climb hills just to piss my cancer off

Inspiration

Pissing off cancer is both metaphorical and physicalBeing diagnosed with a Grade 2 metastatic Neuroendocrine Cancer in 2010 was a bit of a shock. I didn't feel ill enough to have a stage IV cancer. At first, I just kept working thinking this was 'something and nothing' and normality would return in due course. Optimum and realism sometimes conflict but I eventually found myself in the middle of both, tweaking the path as I went along it. Occasionally, my path took me upwards and downwards in a metaphorical sense and with advanced cancer, sometimes a metaphorical hill climb is necessary but needs motivation.I do a lot of walking and climbing hills is not easy when your get older, but the motivation is often there. I do believe there are some…

18Feb 2023 by Ronny Allan No Comments

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

Clinical Trials, Treatment

What is von Hippel-Lindau disease (VHL)?Von Hippel-Lindau disease (VHL) is an autosomal dominant disease that can predispose individuals to multiple neoplasms. Germline pathogenic variants in the VHL gene predispose individuals to specific types of benign tumors, malignant tumors, and cysts in many organ systems. These include central nervous system hemangioblastomas; retinal hemangioblastomas; clear cell renal cell carcinomas and renal cysts; pheochromocytomas, cysts, cystadenomas, and neuroendocrine tumors of the pancreas; endolymphatic sac tumors; and cystadenomas of the epididymis. What is Belzutifan (Welireg)?It is an oral hypoxia-inducible factor-2 alpha (HIF-2α) inhibitor. As an inhibitor of HIF-2α, belzutifan reduces transcription and expression of HIF-2α target genes associated with cellular proliferation, angiogenesis and tumor growth.On August 13 2021, FDA approved belzutifan (Welireg) to treat adults who have several tumors associated with VHL. Specifically, the drug is approved to treat VHL-associated renal cell carcinoma (a type of kidney…

17Feb 2023 by Ronny Allan No Comments

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

Clinical Trials

What is Nivolumab (Opdivo)Nivolumab is a type of cancer treatment drug called an immunotherapy. It is a treatment for a number of different types of cancer. You might have it as part of a clinical trial for other types of cancer.What is Temozolomide (Temodal)Temozolomide is a type of chemotherapy. It is well known in Neuroendocrine Cancer as the TEM in CAPTEMTrial SummaryThe purpose of the trial. Treatment options are sometimes limited in patients with metastatic neuroendocrine neoplasms (NEN). The primary endpoint was response rate (using RECIST 1.1). Secondary endpoints included progression-free survival (PFS), overall survival (OS), and safety. Immune profiling was performed by mass cytometry to evaluate the effect on peripheral blood immune cell subsets."In summary, the combination of temozolomide and nivolumab showed promising activity in NEN, especially in lung…

12Feb 2023 by Ronny Allan No Comments

A Newsletter from RonnyAllan.NET – 12th February 2023

Newsletters

Newsletter from Ronny Allan - 12th February 2023Welcome to my new template newsletter compiled using WordPress (my blog app). I generated a template similar to my previous email newsletter and hopefully this will work out. But it does rely on you opening the email notification you receive. This is a bit of a practice so I'm hoping this format will work (Please support it!) and I'll continue to look for a suitable app which meets my needs in the meantime. Latest Blog Posts My award winning blog is central to everything I do, without it, there is no Facebook, twitter or private group. It follows that supporting my blog is also supporting those other outlets. The widget below displays the last 9 published posts with lead photo and short description…

02Feb 2023 by Ronny Allan No Comments

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

Newsletters, Patient Advocacy

SummaryGreat start to 2023 and I thank those who continue to support my social media and this blog. I'm keen to hear any suggestions of the sort of thing you would like me to research and publish.The top 10 most-read posts in January are listed below:Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patientThe Masters Snooker competition was held in January 2023 and there was a tremendous spike in views at the time of the final. The Masters Trophy was named the Paul Hunter trophy, and this incidentally generates a vast amount of awareness for Neuroendocrine Cancer as most of the hits come from outside the Neuroendocrine community. Click here or on the picture.[caption id="attachment_19993" align="aligncenter" width="416"] Click picture to read more[/caption]Cancer AblationA popular post with the headline of…

31Jan 2023 by Ronny Allan No Comments

Phase I study of procaspase-activating compound-1 (PAC-1) in the treatment of advanced malignancies (incl NET)

Clinical Trials

Trial SummaryThis interesting trial is a multi-cancer effort including NET. The phase I clinical trial of Procaspase Activating Compound-1 (PAC-1), a drug that spurs programmed cell death in cancer cells, found only minor side effects in patients with end-stage cancers. The drug stalled the growth of tumors in the five people in the trial with neuroendocrine cancers and reduced tumor size in two of those patients. It also showed some therapeutic activity against sarcomas, scientists and clinicians report in the British Journal of Cancer. As of March 1, 2019, only patients with neuroendocrine tumors will be enrolled in Component 1 of this study. PAC-1 is taken orally on days 1-21 of a 28-day cycle. The maximum tolerated dose (MTD) of PAC-1 (5 dose levels) will be determined using a modified-Fibonacci…

29Jan 2023 by Ronny Allan No Comments

Dustin Diamond

Awareness

I'm behind the curve on this one after being ahead on celebrities such as Steve Jobs, Aretha Franklin, Wilko Johnson and Olivia Williams. But in my defence, Dustin Diamond was not that well known in UK. I noticed his name mentioned in relation to "Neuroendocrine" in early 2023. I set about searching and it didn't take me long to make a connection. BUT .... this is much more complex than the cases above despite the misinformation which followed in all of these cases due to the use of anatomy to name cancers. This appears to be a common issue, particularly as it is the language used by doctors and the press to simplify the complexity to which I refer above; and will outline below. Who is Dustin Diamond Dustin Neil…

22Jan 2023 by Ronny Allan 2 Comments

Neuroendocrine tumors are uncommon but definitely not rare

Awareness, Patient Advocacy

USA finally commits UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. It was great to see this post from the American Society of Clinical Oncology, albeit the USA is joining later than many other countries confirming the worst-kept secret ever - NETs are not rare. That said, several NET specialists in the USA have been more vocal about this (one example is below), much more so than the cancer organisations (including the ones who represent us) who disappointingly market the rare theme along with the antiquated use of words such as “carcinoid” which seems rifer in USA than many other parts of the world. USA is normally at the forefront of progress so let’s hope they will now get on with…

14Jan 2023 by Ronny Allan No Comments

Cancer Ablation

Clinical Trials, Patient Advocacy, Treatment

What is Cancer Ablation?This is a minimally invasive surgical method to treat solid cancers. Special probes are used to “burn” or “freeze” cancers. Computed Tomography (CT), Ultrasound (US) or Magnetic Resonance Imaging (MRI) is used to guide and position the needle probe into the tumour. This requires only a tiny hole, usually less than 3 mm via which the probe is introduced. When the probe is within the cancer it is attached to a generator which “burns” or “freezes” the cancer. “Burning” refers to increasing the temperature of the tumour to such a level that cancer cells die. This is usually achieved by radio frequency probes, referring to the type of energy used to increase the temperature. “Freezing” refers to cryoablation which decreases the temperature to -40 C (-40 F)…

11Jan 2023 by Ronny Allan 3 Comments

Lactose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy

Background When I cast my mind back to my very first surgery, I remember asking my Oncologist what I could do to put on weight. He said to drink full-fat milk. I was compliant in those days without reverting to Dr Google. Anyway, I did put on weight but perhaps the milk played a small part in that, and I eventually returned to semi-skimmed which I continue to use today (12 years on). My breakfast regime in the last 12 years since that surgery contains regular semi-skimmed milk and my many cups of tea have the same milk added. I guess there is milk in many other things such as dairy products which I happily consume. I don't believe I have any lactose intolerance to worry about. Given the…

08Jan 2023 by Ronny Allan 2 Comments

EUS Guided Ablation for small pancreatic NETs (Less than 2cm)

Clinical Trials, Patient Advocacy

To burn or not to burn?I once wrote a post about Pancreatic NET "to cut or not to cut". You can read that here. Surgery for small pancreatic NETs remains controversial with most guidelines and study guidelines recommending surveillance for small primary tumours less than 2cm. There are exceptions to that, e.g. preventative surgery if the tumour is threatening important vessels and for functional cases where the surgery is palliative in nature. Contrast that against some patient perspectives where they just want it cut out (and some will 'surgeon-shop' until they find someone who will).Most pancreatic NET are lower grades (e.g. Grade 1 and 2) well differentiated, most are non-functional, many are localised. Functional tumours such as Insulinoma are mostly small and localised. A lack of sensitive and specific markers that…

03Jan 2023 by Ronny Allan 2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, Treatment

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 is due to a change in Facebook algorithms which affected many ‘pages’ reducing their scope (the more cynical might say it was done to drive advertising revenue but …….). 2022…

01Jan 2023 by Ronny Allan No Comments

RonnyAllan.NET – Summary of December 2022

Awareness, Newsletters, Patient Advocacy

SummaryDecember is always the quietest month of the year, no surprise why! However, the top 10 below is somewhat surprising, I guess some posts I make spike regardless of the time of year. Ever wonder what caused your Neuroendocrine Cancer?This clearly interests people because approaching 1000 people read it from one single post on Facebook. If this floats your boat - Click here or on the picture.[caption id="attachment_3019" align="aligncenter" width="530"] Click the picture to read more[/caption]Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)A frequently visited post, very helpful I'm told. It will one day be my most-read blog post. Click here or on the picture[caption id="attachment_14876" align="aligncenter" width="640"] Click the picture to read more[/caption]A Christmas 2022 message from RonnyA first-time…

31Dec 2022 by Ronny Allan 4 Comments

Happy New Year from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny

Another year of survivalI normally only do a Facebook happy new year, but I wanted to make sure I reached everyone who follows my blog and other social media outlets. All of the outlets above have kept my viewing figures high and although I only beat 2021 viewing figures by almost 10,000, it is an upward trend, so I'll take it!2022 was an amazing year in many respects. I continue to live well with Neuroendocrine Cancer, almost like a chronic disease. I'm not foolish enough to think I don't need surveillance though. That is ongoing, including regular contact when required with my primary and secondary care contacts. The biggest problem I've had this year has been succumbing to "the other big C" (after avoiding it for 28 months!) and…

26Dec 2022 by Ronny Allan 8 Comments

Piss off cancer – 12 years of Christmas and I’m still here!

Awareness, Inspiration

12 Christmas celebrations since diagnosis and I'm still here. 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 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 and a long shot - an infusion of tryptophan from the meal 😏 My Facebook memory from today 12 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…

23Dec 2022 by Ronny Allan 2 Comments

A Christmas 2022 message from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny

Background to 2022I've only ever sent these on Facebook but this 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 2022 total of around 270,000 blog hits and hitting the milestone of 2 million blog hits in early November - that was a major boost. It takes 3-4 years to get a million hits based on current performance. This has been a challenging year, mainly because the pandemic had some impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal…

14Dec 2022 by Ronny Allan No Comments

A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

Clinical Trials, Patient Advocacy, Survivorship, Treatment

Background It's normally the case that the higher the grade/Ki67 in Neuroendocrine Neoplasms (NENs), the less likely the tumours will have somatostatin receptors and therefore be able to take advantage of somatostatin receptor PET (SSTR PET) as the gold standard in nuclear imaging. This is why most grade 3 NENs will receive [18F]FDG PET/CT which finds glycolytic activity in the tumour and predicts an aggressive disease course and normally a higher histological grade. It can also add to prognostic outcomes, which in turn can add to therapy choice decisions. There is an overlap though, particularly with the recognition of well-differentiated Grade 3 Neuroendocrine Tumours (NETs). It is known that some glycolytic activity might be present in some well-differentiated NETs, in particular, grade 3 and the upper range of 2 Neuroendocrine…

12Dec 2022 by Ronny Allan No Comments

Stereotactic body radiation therapy (SBRT) in the treatment of Neuroendocrine Neoplasms

Clinical Trials, Treatment

What is Stereotactic Body Radiation Therapy (SBRT)? External beam radiotherapy has been around for a while. But the next generation equipment and techniques are gradually being deployed. It's a confusing area with many synonyms which I found when I wrote about the subject in a treatment summary for patients. Some of the sub-components/synonyms may be familiar to you and are often used interchangeably with SBRT; but are actually a brand name (e.g.Cyberknife) or a type (e.g. Proton Beam). You will not find SBRT mentioned in any Neuroendocrine Neoplasms (NENs) guidelines and that's because it is not a "standard of care" for this disease. If it is not a standard of care, why did I include SBRT and various techniques in the above summary? I was prompted to include this after…

08Dec 2022 by Ronny Allan No Comments

Lanreotide: 12 more years

Inspiration, Treatment

I once wrote a blog entitled "Four more years". I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times). As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views. I can tell you now, it worked as I still get hits today from unsuspecting political buffs! I've since written updates at the 11-year point and will update you each year. This year I wanted to recount my story about the events leading up to Injection 1 on 9th December 2010. 9th December 2010 I was at home recuperating from major surgery wondering what the next event in my…

02Dec 2022 by Ronny Allan No Comments

RonnyAllan.NET – Summary of November 2022

Awareness, Newsletters, Patient Advocacy

In November 2022, I was very active on my blog site as it was World Neuroendocrine Cancer Day on 10th Nov (although every day is the same for me!). The death of Wilko Johnson was unexpected, I tough he would be strumming his guitar for a bit longer. That was the top post by some margin. The 2nd top was surprisingly popular - empathy from an oncology nurse diagnosed with cancer. Only one old favourite made it into the top 5. Here are the 5 most read posts in November 2022. Click on the blue heading or the picture to read. My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko! - Ronny Allan - Living with Neuroendocrine Cancer Dear every cancer patient I ever took care of, I’m…

01Dec 2022 by Ronny Allan No Comments

In the news – new Neuroendocrine Tumour PET Fluorine-18 based ‘tracer’

Clinical Trials, Patient Advocacy

This should be of interest, particularly to Canadians. (Not to be confused with 18F-FDG which is a different scan). For people waiting for imaging tests to diagnose neuroendocrine cancer, time is of the essence. Now, thanks to researchers at the University of Alberta, a new medical imaging agent for PET scans promises to reduce wait times, while costing less to produce and possibly revealing more of some types of cancer tumors. Ralf Schirrmacher, an oncology imaging professor and member of the Cancer Research Institute of Northern Alberta, and his team at the Medical Isotope and Cyclotron Facility on the U of A's South Campus have been using a state-of-the-art cyclotron—a machine that already supplies the province with medical isotopes used in diagnostic scans—to create a new imaging compound that will…

27Nov 2022 by Ronny Allan 5 Comments

Incurable isn’t terminal

Patient Advocacy

OpinionWords are important I was diagnosed with stage IV cancer in 2010. OK, it wasn't a really aggressive type but it had caused a lot of damage. It's amazing to think that someone is still adding to their stage IV cancer story after 12 years. You can read a chronological list of what happened to me and what treatment I had (and still get) by clicking here. So, am I terminal? No, in my opinion, and by any stretch of the imagination, someone who has lived with stage IV cancer for 12 years cannot be considered terminal. Let's look at some definitions which are generally agreed with similar wording wherever you look: Terminal Cancer Terminal cancer refers to cancer that can’t be cured or treated. It’s sometimes also called end-stage cancer.…

25Nov 2022 by Ronny Allan No Comments

The Inspirational Wilko Johnson: 12 July 1947 – 21 November 2022

Awareness, Inspiration

Wilko playing at his last show. Oct 2022 in London. Aged 75. RIP Wilko Johnson - Neuroendocrine Cancer I have been following Wilko's cancer story since December 2015 (and what a story it is) Read more by clicking here. [caption id="attachment_14806" align="aligncenter" width="785"] Wilko Johnson performing at The Royal Albert Hall, London on 26th September 2017[/caption] Charlie Chan (left) convinced Wilko to get his diagnosis checked, Emmanuel Huguet (right) removed his huge tumour in Cambridge. Two videos below. Wilko is mainly a guitar player but he also wrote songs and sings too. Video 1 is 2006 when he was part of Dr Feelgood. Boom Boom. Video 2 was made with Roger Dawltry (The Who) for the Going back Home tour. Was supposed to be Wilko's swan song. He opted for…

24Nov 2022 by Ronny Allan No Comments

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient Advocacy

Definitions - the differences between Hereditary vs Familial vs Genetic DisordersI wanted to start with these definitions because people may unintentionally use these three terms interchangeably which is sometimes not the correct use of the information being conveyed. However, after studying this subject, I can tell you it is a very complex area and difficult to explain and then understand in a single paragraph. Even these widely accepted definitions don't make it any more understandable! The terms ‘hereditary’ and ‘familial’ look like synonyms and are frequently used interchangeably but are two different concepts. ‘Hereditary’ is most commonly used when referring to diseases with a known genetic cause whereas ’Familial’ disorders are those which appear to have a genetic component, affecting more family members than would be expected by chance alone. However,…

18Nov 2022 by Ronny Allan 1 Comment

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient Advocacy

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 very aggressive versions similar to many dangerous adenocarcinomas. Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex…

10Nov 2022 by Ronny Allan 2 Comments

Ask More, Assume Less

Awareness, Patient Advocacy

This is a great catchphrase from Neuroendocrine Cancer UK. It is partly based on the realisation that Neuroendocrine Cancer is no longer rare. OK, that has been the case for some years but the recent data from NHS England cements this patently obvious truth. In England, it is now the 10th most prevalent cancer with a continually rising incidence – that has already seen 371% increase since 1995. Neuroendocrine Cancer UK is possibly the most progressive organisation within the INCA national collective, although I am seeing glimmers of change in some others. Unfortunately, many North American organizations/advocates appear to be going backward on this issue which I find bizarre. Certain European countries are also lagging. The phrase "Ask More and "Assume Less" is a great punchline and fits many of the…

09Nov 2022 by Ronny Allan 6 Comments

Piss off Cancer, it’s been 12 years since my “big surgery”

Awareness, Inspiration

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…

09Nov 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: 10 questions your dietitian will ask

Diet and Nutrition, Patient Advocacy

Background to Diet and Nutrition This is clearly an important topic for many patients. In my group, it is the 12th most common topic out of 100 topics available. For some, it is their most pressing concern. However, Neuroendocrine Neoplasms (NENs) are a heterogeneous group of cancers and so are people's diet and nutrition issues and needs. Some people may not have any issues and for others, there is a dependency on knowing information about the patient's type of NEN along with other information including comorbidities which might also be playing a part in driving the need. Access to Dietitians I'm certain this is an unmet need across the world, even in rich and well-developed countries. Without any disrespect for accredited dietitians, specialist knowledge of NENs is really important given…

07Nov 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: Beware But Be Aware

Awareness

An awareness post from Ronny Allan BEWARE There 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), it will try to break out via your blood and lymphatic systems. It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones,…

05Nov 2022 by Ronny Allan No Comments

Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Incidental Findings in SSTR PETSomatostatin Receptor (SSTR) PET scans (e.g. Ga68/Cu64) have transformed the imaging landscape for Neuroendocrine Cancer, mainly for well-differentiated NETs, most of which will be somatostatin receptor positive. However, Oncologists/NET Specialists and radiologists must be aware of the various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error. Included in these pitfalls are incidental findings. What is an incidental finding? An incidental finding, also known as an incidentaloma, may be defined as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality (e.g. PET) performed for an unrelated reason.” An increase in the utilisation of imaging examinations over the past three decades has led to a marked increase in the number of findings detected that are unrelated to the…

03Nov 2022 by Ronny Allan No Comments

RonnyAllan.NET – Summary of October 2022

Awareness, Newsletters, Patient Advocacy

In October 2022, it was nice to see some of the newer blog posts featuring rather than the old favourites. That guy Steve Jobs is there but only because I posted about the anniversary of his death on October 5th.Here are the 5 most read posts in October 2022.Evidence of disease but stableEvidence of disease but stable. People get fixated on these terms, or not even be aware of what they actually mean.... but the aim of this blog post was to say that even with Evidence of Disease (ED) you can still be stable.Click here or on the picture to read more:[caption id="attachment_36751" align="aligncenter" width="640"] Click on the picture to read more[/caption]Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER hadSteve Jobs – the most famous Neuroendocrine…

02Nov 2022 by Ronny Allan 1 Comment

Alpha-emitter PRRT: Phase 1/2 Study of AlphaMedix™ (²¹²Pb-DOTAMTATE) in Adult Subjects With SSTR positive NET

Clinical Trials

Ebrahim S Delpassand, Izabela Tworowska, Rouzbeh Esfandiari, Julien Torgue, Jason Hurt, Afshin Shafie and Rodolfo Núñez Journal of Nuclear Medicine, January 2022, jnumed.121.263230; DOI: https://doi.org/10.2967/jnumed.121.263230 What is Alpha-emitter PRRT? Substitution of an alpha emitter (e.g. ²¹²Pb) for the beta emitters currently being used (i.e., 177Lu or 90Y) will provide significantly higher Linear Energy Transfer (LET) and a shorter path length. Higher LET particles should cause more tumour cell death. Shorter path length should result in less collateral damage of the normal tissue and therefore less side effects for subjects receiving the drug. Trial Summary AlphaMedix™ (²¹²Pb-DOTAMTATE) is a radiotherapeutic drug indicated in subjects with unresectable, metastatic somatostatin receptor (SSTR) positive neuroendocrine tumors (NETs). Because 212Pb is an in vivo generator of alpha particles, it is particularly suitable for SSTR therapy applications, i.e. it's a type of PRRT. This drug addresses an…

24Oct 2022 by Ronny Allan 2 Comments

How are you, Doctor?

Awareness, Patient Advocacy

When I was a kid growing up in the 50s/60s, I have vague recollections of seeing doctors from time to time. It always felt like the doctor was a highly respected person who knew everything and was someone to whom it was safe to divulge your most intimate secrets! I think for me, that perception continued throughout my time in the military and beyond. I suspect as you mature in age, you become more relaxed about seeing a doctor and you begin to realise they are human beings just like you. That said, the relationship is normally always a professional one, even today. Throughout your life, many people greet you in the street or on the phone often with the words "How are you?". You will probably say "fine" or "good…

23Oct 2022 by Ronny Allan No Comments

Benign liver lesions and cysts – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy

BackgroundI wanted to focus on two terms "lesion" and "cyst" given these are mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told (or read before an appointment) this was found during diagnostic scans. Sometimes these are described by doctors as "liver lesions". Lesion is defined as "An area of abnormal tissue. A lesion may be benign (not cancer) or malignant (cancer)". The majority of liver lesions are noncancerous (benign) and will not be related to Neuroendocrine Cancer. Many lesions are detected during imaging tests for unrelated health conditions. Although most lesions aren’t harmful, it’s still critical to receive a proper diagnosis. This is particularly important if these lesions are in addition to known cancerous ones included with…

19Oct 2022 by Ronny Allan 3 Comments

Understanding your Somatostatin Receptor (SSTR) PET Results

Patient Advocacy

Background In my online patient group, there is constant discussion about the meaning of both pictures and words on scan reports. The one that seems to cause the most confusion is PET scans, mainly somatostatin receptor (SSTR) PETs such as Ga68 and Cu64 variants. Worth adding that it's the addition of a nuclear tracer that makes PETs seem different. Generally speaking, the PET hardware is essentially the same. Most have a built-in CT scan, much less frequently an MRI scan. Confusion is often triggered by healthcare system processes where the patient receives the report before the appointment to discuss the results with the referring physician. Cue anxiety because the average patient reader does not understand and certain words cause them to worry, often unnecessary worry. The patient then becomes impatient…

17Oct 2022 by Ronny Allan No Comments

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

Patient Advocacy, Treatment

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 link to watch each one) Episode 1 - Overview of Neuroendocrine Tumors (NETs) (onclive.com) Episode 2 - Overview of Carcinoid Syndrome (CS) (onclive.com) Episode 3 - Overview of Carcinoid Heart…

14Oct 2022 by Ronny Allan No Comments

The Hidden Pheochromocytoma

Awareness, Patient Advocacy

I've written a few times about Pheochromocytomas and Paragangliomas, allegedly rare types of Neuroendocrine Tumour (NET). I've also written about various hidden diagnoses of NET cases where they are eventually found in living patients having been 'hidden' within other diseases, i.e. misclassified in cancer registries or even not classified as cancer at all. If you read any medical site (including hospitals which treat Pheochromocytoma) you will note statements along the lines of "mostly benign" - so it's possible the incidence rate is vastly understated on this factor alone.The other interesting data I found is that many are not discovered until autopsy. Perhaps some people were asymptomatic or maybe they just stoically put up with their symptoms. Perhaps their symptoms were put down to routine illness such as hypertension, maybe imaging…

11Oct 2022 by Ronny Allan No Comments

New test of pancreatic cysts to help with cancer detection

Clinical Trials, Patient Advocacy, Treatment

With NETs, particularly pancreatic NETs, due to a lack of efficient prognostic markers, it is difficult to identify which cases are more likely to metastasise than others. Identifying whether cysts will turn cancerous is also another area requiring a screening program as a standard of care to monitor. Molecular testing is advancing and this test I'm reporting here looks like good news in the case of assessing the risks of pancreatic cysts. Pancreatic cysts are common. For example, up to 15% of the U.S. population will develop a pancreatic cyst at some point in their lives. Most of these cysts are benign, but a small fraction will transform into cancer, including pancreatic NET. A molecular test developed by the University of Pittsburgh is able to distinguish benign pancreatic cysts from…

10Oct 2022 by Ronny Allan No Comments

Evidence of disease but stable

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

Musings from a metastatic NET patient of 12 years plus In every surveillance session I've had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to "stable". After a surveillance event in 2021, I was awarded the accolade of "reassuringly stable", a status which I was happy to accept! Words are very important to cancer patients, some people hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry. Why can't doctors just…

06Oct 2022 by Ronny Allan 3 Comments

Study of Lu-177-DOTATATE (Lutathera) in Combination With PARP Inhibitors in Inoperable/Metastatic Gastroenteropancreatic Neuroendocrine Tumors (GEP-NET)

Clinical Trials

PARP inhibitor with PRRT clinical trials update. 1. NIH Trial SummaryA phase I/II clinical trial at the NIH Clinical Center evaluates the effectiveness of a combination of two agents that may work in complementary ways to target inoperable or metastatic neuroendocrine tumoors. One agent, lutathera, emits radiation inside the body, causing DNA damage, and the second agent, olaparib, a PARP inhibitor, blocks the repair of DNA breaks. The trial commences in Oct 2022 running for approximately 2 years 9 months. What is Lutathera?It's a type of Peptide Receptor Radionuclide Therapy (PRRT) and has been in use for some years as a standard of care (mostly second line). Read more click here.What is Olaparib and what does it do in conjunction with Lutathera?Olaparib (AZD-2281, trade name Lynparza) is an FDA-approved targeted therapy for cancer, developed…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list: 1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list. 2. For numerical terms, please click on the hashtag (#) symbol in the A-to-Z strip. 3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary,…

30Sep 2022 by Ronny Allan No Comments

Opinion: On Rare Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness

On Rare Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Well, there are three main things wrong with Neuroendocrine Cancer awareness: 1. The incidence and prevalence of Neuroendocrine Neoplasms (the combination of Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)) have skyrocketed in the last 40 years to the point that many scientists, epidemiologists and Neuroendocrine specialists are starting to use different terminology, commensurate with the math. Read more by clicking here or on the picture below. Let's do the math not the myth. 2. Linked to the issue above, the community remains entrenched in 1907 terminology which needs bringing into 2021. Things have moved on so much but the use of this ancient terminology and what it infers just keeps us marking time in the last century.…