Ronny Allan - Living with Neuroendocrine Cancer - Page 10 of 16 - Ronny Allan - International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping patients and their advocates

01 Apr 2023

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

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Alternative therapies, Fructose intolerance, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET)

Summary - Many thanks for supporting my social media in March. I remain 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 March are listed below: Tribute to the life and legacy of Miranda Filmer A story of strength and inspiration in the most trying of circumstances. Miranda and her parents are determined to help others despite the loss of Miranda. Click here…

26 Mar 2023

By Ronny Allan

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A spotlight on Appendiceal Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types SeriesAppendectomy, Appendiceal NET, Appendix, Right hemicolectomy

What are Appendiceal NENs Appendiceal Neuroendocrine Neoplasms (NENs) account for approximately 60% of all primary cancers in the appendix. The other main cancer types found in the appendix are regular adenocarcinomas (including signet ring cell and goblet cell) and mucinous neoplasms such as Pseudomyxoma Peritonei (PMP) or Low-Grade Mucinous Neoplasms (LAMD). Appendiceal neuroendocrine tumours (aNET) (i.e. well differentiated) account for 75% of all aNENs, are mostly indolent tumours treated effectively with simple appendectomy. In fact, most are incidentally found upon presentation of right lower quadrant (RLQ) pain in keeping with appendicitis. They are typically (but not exclusively) diagnosed in younger…

24 Mar 2023

By Ronny Allan

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

Clinical Trials and ResearchCu-61, Ga68-DOTATOC, Somatostatin receptors (SSTR), SSTR-PET, TraceNET

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…

16 Mar 2023

By Ronny Allan

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Experimental drug for Gastric NET – Netazepide

Clinical Trials and Research, TreatmentAtrophic gastritis, Clinical trial, Gastric NET, Gastrin, Netazepide, Neuroendocrine tumour (NET)

Update Apr 2026. Nothing has been published about this trial for some years. I spoke to a leading UK Gastroenterologist who thinks it has been quietly dropped. I will keep this blog open for a year or more just in case anything crops up. 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…

12 Mar 2023

By Ronny Allan

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A Newsletter from RonnyAllan.NET – 13th March 2023

Awareness, NewslettersNeuroendocrine cancer

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…

10 Mar 2023

By Ronny Allan

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Fructose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect SeriesDiarrhea, Diet, Fructose intolerance, Irritable bowel syndrome (IBS), Lactose intolerance, Malabsorption, Small intestine bacterial overgrowth (SIBO)

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…

09 Mar 2023

By Ronny Allan

1 Comment

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials and Research, InspirationAdvanced neuroendocrine cancer, Cancer of unknown primary (CUP), Cancer research, Differentiation, Poorly differentiated, Well differentiated

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…

05 Mar 2023

By Ronny Allan

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Treatment for Neuroendocrine Cancer: Beware of the alternatives

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAlternative medicine, Alternative therapies

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…

04 Mar 2023

By Ronny Allan

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

Newsletters, Patient AdvocacyNeuroendocrine cancer

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…

22 Feb 2023

By Ronny Allan

2 Comments

A spotlight on Gastric Neuroendocrine Neoplasms (based on 2026 WHO Classification)

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, TreatmentAtrophic gastritis, Gastric NET, Gastrin, Gastrin pH, Gastrinoma, Hypergastrinemia, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pernicious anaemia, Proton pump inhibitors (PPI)

What are Gastric NENs Unlike 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…

19 Feb 2023

By Ronny Allan

6 Comments

Sometimes I have to climb hills for the mental challenge

InspirationAdvanced neuroendocrine cancer

Facing cancer tests both the mind and the body. Hill climbing—literal and metaphorical—captures that dual challenge perfectly. When I was diagnosed with Grade 2 metastatic Neuroendocrine Cancer in 2010, it came as a shock. I didn’t feel unwell enough to imagine I had stage IV disease. At first, I simply carried on working, assuming it was “something and nothing” and that normality would soon return. Over time, I learned that optimism and realism don’t always align, and I eventually settled somewhere between the two, adjusting my route as I went. My journey rose and fell in ways that felt very…

18 Feb 2023

By Ronny Allan

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

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Clinical trial, Hereditary pheochromocytoma/paraganglioma syndromes, Pancreatic NET (PanNET), Paraganglioma, Pheochromocytoma, Von Hippel-Lindau (VHL) Syndrome

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…

17 Feb 2023

By Ronny Allan

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

Clinical Trials and ResearchChemotherapy, Clinical trial, High Grade NEC, Immunotherapy, Large cell neuroendocrine carcinoma (LCNEC), Lung NETs, Nivolumab (Opdivo), Pancreatic NET (PanNET), Small cell lung cancer (SCLC), Temozolomide (Temodal)

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 CAPTEM Trial Summary The 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…

12 Feb 2023

By Ronny Allan

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A Newsletter from RonnyAllan.NET – 12th February 2023

NewslettersNeuroendocrine cancer

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…

02 Feb 2023

By Ronny Allan

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

Newsletters, Patient AdvocacyAblation, Cancer related fatigue, Endoscopic ultrasound (EUS), Epidemiology, Lactose intolerance, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Small cell lung cancer (SCLC)

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…

31 Jan 2023

By Ronny Allan

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

Clinical Trials and ResearchClinical trial, Procaspase-activating compound-1 (PAC-1)

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…

29 Jan 2023

By Ronny Allan

0 Comments

Dustin Diamond (January 7, 1977 – February 1, 2021)

AwarenessBronchopulmonary Neuroendocrine Neoplasms (BP NEN), lung, Lung Cancer, Small cell lung cancer (SCLC), Small cell neuroendocrine carcinoma (SCNEC)

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…

22 Jan 2023

By Ronny Allan

2 Comments

Neuroendocrine tumors are uncommon but definitely not rare

Awareness, Patient AdvocacyEpidemiology, Incidence, Neuroendocrine cancer, Prevalence

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…

14 Jan 2023

By Ronny Allan

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Cancer Ablation

Clinical Trials and Research, Patient Advocacy, TreatmentAblation, High-intensity focused ultrasound (HIFU), Histotripsy, Radio Frequency Ablation (RFA), Stereotactic body radiotherapy (SBRT), Stereotactic radiosurgery (SRS)

What is Cancer Ablation? This is a minimally invasive surgical method to treat solid cancers. More modern types of ablative style treatments may be described as non-invasive. With conventional ablation, 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…

11 Jan 2023

By Ronny Allan

3 Comments

Lactose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect SeriesDiarrhea, Diet, Lactose intolerance, Malabsorption

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. …

08 Jan 2023

By Ronny Allan

2 Comments

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

Clinical Trials and Research, Patient AdvocacyAblation, Endoscopic ultrasound (EUS), Pancreatic NET (PanNET), Surgery

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…

03 Jan 2023

By Ronny Allan

2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Clinical trial, COVID-19, Diagnosis, Diet, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

Review In 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…

01 Jan 2023

By Ronny Allan

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RonnyAllan.NET – Summary of December 2022

Awareness, Newsletters, Patient AdvocacyNeuroendocrine cancer

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.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. …

31 Dec 2022

By Ronny Allan

4 Comments

Happy New Year from Ronny

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

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…

23 Dec 2022

By Ronny Allan

2 Comments

A Christmas 2022 message from Ronny

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

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…

14 Dec 2022

By Ronny Allan

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

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment18F-FDG, 18F-FDG PET/CT, Ga68 PET/CT, Metastatic Neuroendocrine Cancer

BackgroundIt'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…

12 Dec 2022

By Ronny Allan

0 Comments

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

Clinical Trials and Research, TreatmentClinical trial, Ectopic Cushing’s syndrome (ECS), Glucagonoma, Insulinoma, Lung NETs, Pancreatic NET (PanNET), Stereotactic body radiotherapy (SBRT)

What is Stereotactic Body Radiation Therapy (SBRT)? External beam radiotherapy has been around for decades, but the technology has evolved dramatically. Today’s treatments involve new techniques, new machines, and new imaging methods, and these terms are often mixed together in ways that confuse patients. When people talk about “SBRT,” “CyberKnife,” or “Proton Beam,” they are often referring to completely different layers of radiotherapy — a technique, a platform, or a type of radiation. Some names are even brand‑specific. Understanding which layer each term belongs to makes the whole field much easier to navigate. SBRT is an external beam radiotherapy technique,…

08 Dec 2022

By Ronny Allan

0 Comments

Lanreotide Ipsen: 13 more years

Inspiration, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Somatuline Autogel (US: depot)

Update 11th Jan 2024. Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen. Clearly to distinguish its product from the generics now rolling out. Not seen similar yet for Somatuline Depot (US). 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…

02 Dec 2022

By Ronny Allan

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RonnyAllan.NET – Summary of November 2022

Awareness, Newsletters, Patient AdvocacyNeuroendocrine cancer

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…

01 Dec 2022

By Ronny Allan

0 Comments

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

Clinical Trials and Research, Patient AdvocacyFluorine-18, SSTR-PET

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…

27 Nov 2022

By Ronny Allan

5 Comments

Metastatic Neuroendocrine Tumours: Incurable isn’t always terminal

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Incurable cancer, Palliative care, Terminal cancer

Words 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 since diagnosis of "incurable cancer". 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 15 years (as at 2025) cannot possibly…

25 Nov 2022

By Ronny Allan

0 Comments

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

Awareness, InspirationPancreatic NET (PanNET)

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. 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…

24 Nov 2022

By Ronny Allan

0 Comments

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient AdvocacyCarney-Stratakis syndrome (CSS), Familial medullary thyroid cancer (FMTC), Genetics, Hereditary pheochromocytoma/paraganglioma syndromes, Medullary thyroid cancer (MTC), MEN1 syndrome, MEN2 syndrome, MEN2A syndrome, MEN2B syndrome, MEN4 syndrome, Neurofibromatosis type 1 (NF1), Paraganglioma, Pheochromocytoma, Tuberous sclerosis (TSC), Von Hippel-Lindau (VHL) Syndrome

Cancer is a genetic disorder. It happens when genes that manage cell activity mutate and create abnormal cells that divide and multiply, eventually disrupting how your body works. Medical researchers estimate 5% to 12% of all cancers are caused by inherited genetic mutations that you can’t control. More frequently, cancer happens as an acquired genetic mutation. Acquired genetic mutations happen over the course of your life. This is a very general description of the close relationships between genetics and cancer but I wanted to focus below on hereditary syndromes and genetic disorders related to Neuroendocrine Neoplasms. Definitions - the differences between Hereditary…

23 Nov 2022

By Ronny Allan

6 Comments

My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!

Awareness, Inspiration, Living with Neuroendocrine CancerMisdiagnosis, Neuroendocrine cancer, Pancreatic cancer, Surgery

BREAKING NEWS I recently blogged about a well-known BBC political reporter who has Neuroendocrine Cancer with a Lung Primary. However, in the usual media 'double speak' which can sometimes pervade the coverage of such events, he is said to have Lung Cancer. As I said in that article, sometimes with Neuroendocrine Cancer - the devil is in the detail and you just need to dig to find it. Annoying, we shouldn't need to dig as he doesn't have Lung Cancer. I wrote about this anatomical issue here. This is exactly what happened to Steve Jobs and Aretha Franklin. No sooner…

10 Nov 2022

By Ronny Allan

2 Comments

Ask More, Assume Less

Awareness, Patient AdvocacyNeuroendocrine cancer

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…

09 Nov 2022

By Ronny Allan

0 Comments

Neuroendocrine Cancer: 10 questions your dietitian will ask

Diet and Nutrition, Patient AdvocacyDiet, Nutrition

Click picture to subscribe 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…

05 Nov 2022

By Ronny Allan

0 Comments

Incidentally, it’s not NET! SSTR PET e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment64Cu-DOTATATE, Ga68 PET/CT, Somatostatin receptors (SSTR), SSTR-PET

Incidental Findings in SSTR PET Somatostatin 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…

03 Nov 2022

By Ronny Allan

0 Comments

RonnyAllan.NET – Summary of October 2022

Awareness, Newsletters, Patient AdvocacyNeuroendocrine cancer

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…

24 Oct 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…

23 Oct 2022

By Ronny Allan

0 Comments

Benign liver lesions and cysts – something or nothing?

Living with Neuroendocrine Cancer, Patient AdvocacyBenign, Hemangioma, Liver cyst, Liver lesion, Liver metastases, Lung nodule

Background I 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 something found during diagnostic scans. Sometimes cysts are included in the term "liver lesions". Lesion is defined as "An area of abnormal tissue. A lesion may be benign (non-cancerous) or malignant (cancerous)". The majority of liver lesions are non-cancerous (benign) and will not be related to Neuroendocrine Cancer, or any cancer. Many lesions are detected during…

17 Oct 2022

By Ronny Allan

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

Patient Advocacy, TreatmentCarcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Neuroendocrine tumour (NET)

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…

11 Oct 2022

By Ronny Allan

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New test of pancreatic cysts to help with cancer detection

Clinical Trials and Research, Patient Advocacy, TreatmentPancreatic cancer, Pancreatic cyst, Pancreatic NET (PanNET), Pancreatic pseudocyst

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…

10 Oct 2022

By Ronny Allan

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Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAnxiety, Cancer surveillance, Epidemiology, No evidence of disease (NED), Prognosis

Musings from a metastatic NET patient of 15 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…

06 Oct 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 and ResearchLutathera, Olaparib, PARP Inhibitor, Peptide receptor radionuclide therapy (PRRT), PRRT, Talazoparib

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…

30 Sep 2022

By Ronny Allan

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

AwarenessNeuroendocrine cancer

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…

30 Sep 2022

By Ronny Allan

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Prospective Phase II Trial of Prognostication by 68Ga-NOTA-AE105 uPAR PET in Patients with Neuroendocrine Neoplasms: Implications for uPAR-Targeted Therapy

Clinical Trials and ResearchBiomarker, Peptide receptor radionuclide therapy (PRRT), PET Scan

Summary A novel PET radiotracer can accurately assess the presence of a biomarker that indicates the level of tumor aggressiveness in neuroendocrine neoplasms (NENs). According to research published in the September issue of The Journal of Nuclear Medicine, the detection of the biomarker provides useful information for physicians to provide personalized care for patients with NENs and may also serve as a potential target for peptide radionuclide therapy (PRRT) for NEN patients.What is uPAR? Tumorigenesis (the production or formation of a tumour or tumours) is closely related to the loss of control of many genes. Urokinase-type plasminogen activator receptor (uPAR), a glycolipid-anchored…

28 Sep 2022

By Ronny Allan

1 Comment

Living with cancer: 5 tips for facing things you can’t control

Inspiration, Patient Advocacy, SurvivorshipAnxiety, Scanxiety

I'm wired not to worry too much about something I cannot control. For example, I automatically ignore any concerns about being inside an imaging device and then having to wait for the results to come through. For me, I need to get the scan and I cannot control the results. The results will be what they will be, and I will react accordingly when I know them. I once wrote an article called "Scanxiety, I just don't get it". In hindsight, perhaps I was a bit harsh as not everyone is wired like me. However, perhaps presenting the reasons for…

23 Sep 2022

By Ronny Allan

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A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)

Clinical Trials and ResearchNeuroendocrine cancer, Neuroendocrine neoplasm (NEN), Oncolytic virus, Solid tumour

A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)Neuroendocrine Neoplasms are considered solid tumours.Imugene Limited, a clinical-stage immuno-oncology company, and City of Hope, one of the largest cancer research and treatment organizations in the United States, today announced that the first patient was dosed in Phase 1 clinical trial evaluating the safety of novel cancer-killing virus CF33-hNIS VAXINIA when used in people with advanced solid tumors. The City of Hope-developed oncolytic virus has been shown to shrink colon, lung, breast, ovarian and pancreatic cancer tumors…

14 Sep 2022

By Ronny Allan

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Clinical Trials – Targeted Alpha-Emitter PRRT RYZ101/RYZ401

Clinical Trials and Research225Ac, Ac-225, Advanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Small cell lung cancer (SCLC), Targeted alpha-emitter therapy (TAT)

Update – 1 April 2026 RYZ401: New Alpha‑Emitter Trial (PRRT‑Naïve Only) In January 2026, RayzeBio (now part of Bristol Myers Squibb) opened a new first‑in‑human trial for RYZ401, titled “Study of RYZ401 in Subjects With Solid Tumors Expressing SSTRs” (NCT07165132). This Phase 1/2 study aims to: determine the recommended Phase 2 dose (RP2D) define the optimal treatment schedule assess safety and tolerability evaluate early signs of efficacy The trial includes NETs and other SSTR‑expressing solid tumours, including meningioma. Important: RYZ401 excludes anyone who has ever received PRRT (Lu‑177 or Y‑90). This makes it a PRRT‑naïve trial. 1 April 2026: The…

12 Sep 2022

By Ronny Allan

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Lung nodules – something or nothing?

Living with Neuroendocrine Cancer, Patient AdvocacyLung nodule

BackgroundA focus on the issue of Lung nodules given I see these mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told this was found during diagnostic scans. Sometimes a lung nodule is also called a ‘pulmonary’ nodule and the two phrases mean the same thing.A lung nodule is an abnormal growth that forms in a lung. You may have one nodule on the lung or several nodules. Nodules may develop in one lung or both. Most lung nodules are benign (not cancerous). Only rarely, lung nodules…