Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET) - Ronny Allan

28Sep 2023 by Ronny Allan No Comments

First and only FDA-cleared, fully automated chromogranin A assay

A Spotlight on NENs - Testing Series, Clinical Trials and Research, Patient Advocacy

There has been controversy about the utility of Chromogranin A for many years now. Specialists have been critical about its use but to be fair even those less critical still confirm that alone it would not be trusted to formally diagnose Neuroendocrine Cancer. That said, it was still controversial when certain US guidelines were updated to recommend it is not regularly tested. It's well known for being a sensitive but non-specific marker for most tumours of Neuroendocrine type, the non-specificity is mostly due to the other conditions, some of which are highly prevalent in many countries, including but not limited to the use of proton pump inhibitors, heart disease and kidney disease. Another criticism has been the lack of faith in using it to assess reaction to treatment.I have to say,…

10May 2023 by Ronny Allan No Comments

Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3) (Beta plus)

Clinical Trials and Research, Treatment

A new clinical trial post.What is Terbium-161 (161Tb-DOTA-LM3) (Beta plus).Terbium-161 is a radioactive substance. DOTA-LM3 is a novel somatostatin antagonist targeted using somatostatin receptor number 2 (SSTR2). Combined they form a radioligand for use in Pepetide Receptor Radionuclide Therapy (PRRT). It's a beta emitter but labelled 'plus' on the basis it offers more than the currently approved Luthera product (lutetium 177 or 177Lu Dotaxxx series). There is evidence that terbium-161 (161Tb) is more powerful than 177Lu, not only in combination with SST2 agonists but particularly with SST2 antagonists.Agonist vs Antagonist in the context of PRRTThe currently approved Luthera product (lutetium 177 or 177Lu Dotaxxx series) are SST2 agonists. SST2 antagonists are more efficient because they can access more binding sites on the cell surface, resulting in higher tumour uptake and…

03Jan 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, 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…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, 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, and ensuring all definitions are…

23Aug 2022 by Ronny Allan 1 Comment

Neuroendocrine Cancer: At least 50 shades of grey

Awareness, 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.And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only one syndrome. Once again, this is partly related to the lingering use of the term Carcinoid. However, while I applaud national and international NET foundations for providing GP (PCP) with symptom lists, they are…

27Jul 2022 by Ronny Allan No Comments

Survival Outcomes in Metastatic Gastroenteropancreatic Neuroendocrine Tumor Patients receiving Concomitant 225Ac-DOTATATE Targeted Alpha Therapy and Capecitabine: A Real-world Scenario Management Based Long-term Outcome Study

Clinical Trials and Research

Introduction I've written about both 225Ac-DOTATATE targeted alpha therapy (TAT) and Capecitabine before but never as a concomitant pair (combo). So, when this Indian study came up on my radar, I felt it was a useful addition to my website adding to my existing targeted alpha therapy portfolio of information. India appears to be using more of this type of PRRT than any other country. Read more about targeted alpha therapy by clicking here or on the photo below. [caption id="attachment_12014" align="aligncenter" width="1024"] Click on the photo to read[/caption] Read more about Capecitabine (combo with Temozolomide) by clicking here or on the photo below. [caption id="attachment_33477" align="aligncenter" width="640"] Click on the photo to read[/caption] The abstract from the Indian study is posted and cited below. Abstract Rationale: Although the short-term results…

16Mar 2022 by Ronny Allan 4 Comments

Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Clinical Trials and Research, Patient Advocacy, Treatment

An Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide) - now that sounds exiting. It doesn't seem that long since we got the new improved injection delivery system for the current model of Lanreotide. I had to look at my blog articles for the announcement of that and was surprised it was way back in 2019. It may be a shorter time period for many though, UK was near the front of that rollout. I personally found the new injection a better experience and I know the nurses were happier too. However, I also know there was some disappointment that the injection gauge and length were the same and therefore there was little change for many in terms of the 'experience'. Speaking from a personal perspective, there was not…

13Nov 2021 by Ronny Allan 6 Comments

A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO)

Clinical Trials and Research, Treatment

Some of the key differences between Lanreotide and Octreotide long-acting are:1. Octreotide long-acting needs constituting prior to administration - Lanreotide comes prefilled. 2. Octreotide long-acting is administered intra-muscular, Lanreotide is deep subcutaneous. 3. I probably should add Octreotide LAR cannot be self-injected but Lanreotide can. I suspect this type of delivery system may open up that possibility for Octreotide LAR. So, this clinical trial caught my eye. A version of octreotide long-acting which is prefilled and given subcutaneously. Plus, the manufacturers say it has a much higher bioavailability than the standard product Sandostatin LAR (bioavailability is the proportion of a drug or other substance which enters the circulation when introduced into the body and so is able to have an active effect).CAM2029 might therefore be considered a generic of Sandostatin LAR but better…

21Sep 2021 by Ronny Allan No Comments

Lutetium 177Lu-Edotreotide Versus Best Standard of Care in Well-differentiated Aggressive Grade-2 and Grade-3 GastroEnteroPancreatic NeuroEndocrine Tumors (GEP-NETs) – (COMPOSE)

Clinical Trials and Research

Garching / Munich, October 27, 2022 ITM Isotope Technologies Munich SE (ITM), a leading radiopharmaceutical biotech company, today announced that the U.S. Food and Drug Administration (FDA) has granted the company Fast Track designation for ITM-11 (n.c.a. 177Lu-edotreotide), an investigational radiopharmaceutical for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). ITM-11 is being evaluated as a Targeted Radionuclide Therapy in two phase III clinical trials, COMPETE and COMPOSE. The FDA Fast Track is a process designed to facilitate the development and expedite the review of drugs to treat serious conditions and address an unmet medical need. The purpose is to bring new and promising medicines to patients sooner. The Fast Track designation enables ITM to have more frequent interactions with the FDA to discuss the ITM-11 development path. It also allows rolling review of the new drug application (NDA)…

30Apr 2021 by Ronny Allan 1 Comment

Dual Tracer (68Ga-DOTATATE and 18F-FDG) PET Imaging in G2 & G3 Gastroenteropancreatic Neuroendocrine Tumours

Clinical Trials and Research

For some time now, I've been watching the development of PET scans for Neuroendocrine Neoplasms (NENs). I use the term 'Neoplasms' because there are different strategies for well and poorly differentiated types, Neuroendocrine Tumour (NET) and Neuroendocrine Carcinoma (NEC) respectively.It's known that most NETs have somatostatin receptors which makes tumours be seen better on somatostatin receptor-based imaging e.g. 68Ga-DOTATATE or 64Cu DOTATATE, but more aggressive types tend not to have working somatostatin receptors and are better seen on regular PET, i.e. 18F-FDG PET/CT. However, nothing in NENs is simple and there's always outliers. This has been highlighted since the addition of a Grade 3 Well Differentiated NET into the equation.The variable clinical outcome of patients with G2 & G3 well diff Gastroenteropancreatic Neuroendocrine Tumours (GEP NETs) makes the selection of…

13Dec 2020 by Ronny Allan 2 Comments

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials and Research, Patient Advocacy, Treatment

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community. This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this is a precise science, there are too many variables. And while this article focusses on the clinical factors, there can of course be non-clinical factors in play in different countries…

18Jun 2020 by Ronny Allan 1 Comment

My interview with ITM – I’m still here!

Awareness, Clinical Trials and Research, Patient Advocacy

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I was delighted to be contacted by ITM AG, a Germany based pharmaceutical company specialising in targeted radionuclide technology in precision oncology (e.g. Peptide Receptor Radionuclide Therapy - PRRT). The company is formally known as ITM Isotopen Technologien München.One of their pipeline developments is 177Lu-Edotreotide / Solucin® in patients with neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NET). The development is via the COMPETE Phase III Clinical Trial which is being conducted worldwide in 11 countries at 33 sites and is open for recruitment. I actually wrote about this trial after attending a workshop at the annual ENETS conference in 2018.I was delighted when they wanted to interview me to…

14Jan 2019 by Ronny Allan No Comments

Clinical Trial SPARTALIZUMAB – Immunotherapy for Neuroendocrine Neoplasms (PDR001)

Clinical Trials and Research, Treatment

UpdateTrial complete. Conclusion abstract - Single agent PD-1/PD-L1 inhibitors have not demonstrated clinical utility in an unselected NET population and should not be used outside of clinical trials. The potential for PD-L1 inhibition in the thoracic cohort warrants further investigation. Read more here. PDR001 (anti-PD-1) is an investigational immunotherapy being developed by Novartis to treat both solid tumors and lymphomas (cancers of the blood). It is currently being trialled on many cancers including Neuroendocrine. Its brand name is SPARTLIZUMAB.How PDR001 worksPDR001 is a type of immunotherapy, meaning that it acts by activating the body’s own immune system to recognize and fight cancer cells. Normally, an immune system cell called T-cells recognizes and kills infected or abnormal cells, including those that are cancerous. To prevent T-cells from accidentally damaging healthy and essential…

07Dec 2017 by Ronny Allan 4 Comments

Phase 3 Clinical Trial of PRRT ITM11 177Lu-Edotreotide (Solucin®) – COMPETE for GEPNETs

Clinical Trials and Research

Garching / Munich, October 27, 2022 ITM Isotope Technologies Munich SE (ITM), a leading radiopharmaceutical biotech company, today announced that the U.S. Food and Drug Administration (FDA) has granted the company Fast Track designation for ITM-11 (n.c.a. 177Lu-edotreotide), an investigational radiopharmaceutical for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). ITM-11 is being evaluated as a Targeted Radionuclide Therapy in two phase III clinical trials, COMPETE and COMPOSE.The FDA Fast Track is a process designed to facilitate the development and expedite the review of drugs to treat serious conditions and address an unmet medical need. The purpose is to bring new and promising medicines to patients sooner. The Fast Track designation enables ITM to have more frequent interactions with the FDA to discuss the ITM-11 development path. It also allows rolling review of the new drug application (NDA) for…

02Oct 2017 by Ronny Allan 10 Comments

Genetics and Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Survivorship

Hereditary genetics.....where to focus In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing and I cannot guarantee this post will contain all of them. Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumors (perhaps along with an associated functional hormone syndrome) and so the genetic condition if there is one, may not be known at this point. [caption id="attachment_14317" align="aligncenter" width="1280"] Overview of genes with recurrent…

08Aug 2017 by Ronny Allan 2 Comments

Lanreotide for Lung NETs – SPINET Clinical Trial

Clinical Trials and Research, Treatment

Reviewed and updated 19th October 2021. Phase III trial data updatedThere's been a lot of action in the area of what is termed Gastro-Entero-Pancreatic Neuroendocrine Tumors (GEP-NETs). It can therefore sometimes appear that Lung NETs are the poor relation. There are certainly some unmet needs in this area of the anatomy including a lack of research. However, there has been some recent movement. Last year, the use of Afinitor (Everolimus) was approved for progressive, non-functional NET of GI or Lung origin.SPINET Trial for Lung NETsIn late 2016, I tipped you off about an Ipsen sponsored trial for Lung NETs involving Lanreotide (Somatuline). SPINET is a Phase 3, prospective, multi-center, randomized, double-blind, study evaluating the efficacy and safety of Lanreotide plus "Best Supportive Care" (BSC) versus placebo plus BSC for the treatment…

15Sep 2016 by Ronny Allan 19 Comments

Neuroendocrine Cancer – the diarrhea jigsaw

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

Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.There are other reasons that might be causing or contributing, including (but not limited to) endocrine problems such as hyperthryoidism, mastocytosis or Addison's disease (which may be secondary illnesses in those with NETs). It's also possible that 'non-sydromic' issues such as stress and diet are contributing. It could be caused by…

26Jul 2015 by Ronny Allan 48 Comments

I’m still here

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

I was diagnosed with metastatic Neuroendocrine Cancer - 26th July 2010. Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions. I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do.There are several types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will handle it their own way - and that's perfectly understandable.The 5-year milestone was significant, I…

01May 2015 by Ronny Allan 34 Comments

Neuroendocrine – what’s that?

Awareness, Patient Advocacy

Neuroendocrine??? what's that! I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?". Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again!Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most…

22Apr 2015 by Ronny Allan 41 Comments

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy

OPINION There's a constant debate regarding the validity of the term 'Carcinoid'. I've posted about this a few times and as far as I know, the debate has been raging for some years. EDIT MARCH 2022. The latest classification system for Lung Neuroendocrine Neoplasms (NEN) confirms the word "carcinoid" is now a choice - the WHO Lung Committee bottled it. I made my choice some years ago, I hope others follow suit. Read more about changes to Lung NEN by clicking here. EDIT APRIL 2020. The latest classification system for Neuroendocrine Neoplasms confirms the word "carcinoid" no longer forms part of the terminology used in Digestive System tumours (effectively removing the term from GEP NETs) - read more - click here Edit May 2020. So, what about other areas not included in…

Tag: Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET)