177Lu-DOTA-LM3 – a novel radionuclide therapy proven safe and effective to treat neuroendocrine neoplasms (NEN)
Update 10th May 2023 - This study has now progressed to a formal clinical trial based in Basel Switzerland. Read by clicking here or on the picture below:A new type of peptide receptor radionuclide therapy (PRRT) has been shown to control disease in 85 percent of patients with metastatic neuroendocrine neoplasms, achieving complete remission in some patients. The first-in-human study utilized 177Lu-DOTA-LM3 therapy, which was administered without severe adverse effects and was well tolerated by the majority of patients. This research was published in the November issue of The Journal of Nuclear Medicine (see citing below).Conclusion: The antagonist PRRT with 177Lu-DOTA-LM3 could be administered without severe…
Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”
It's known that Neuroendocrine Cancer is quite different in many ways from other cancers, notwithstanding the misnomer term carcinoid which is thankfully being slowly moved out of terminology. As a few examples:It's a wide spectrum heterogeneous cancer group with indolent isolated small tumours at one end all the way across to extremely aggressive metastatic cases at the other end.It's a cancer type that can be syndromically functional or non-functional to add to diagnostic and management challenges.It's a cancer that can appear almost anywhere in the human body.One of it's less well-known traits is the ability to produce multiple primary tumours. …
20th November 2010 – feeling perkier
Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications. At that point, I had been keeping my diagnosis within close family and friends and my manager at work. People at work and my wider list of friends were probably wondering what was going on with me. Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up. To be honest, the first…
Opinion: On World Neuroendocrine Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?
On World Neuroendocrine Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Where do I start ........ well, there are three main things wrong with Neuroendocrine Cancer awareness. Ancient Misnomers 1. The community remains entrenched in 1907 terminology which needs to be brought into 2022. 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. It does not do us any favours in awareness terms, nor does it do us any favours in clinical terms. If clinicians, scientific organisations (including pharma and…
In the land of small tumours, there is still a lot of work to do!
I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1). He always delivers with "enthusiastic vigour", a term he reduces to "brio" (which I had to google!)His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors". He quotes from a…
The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability
I see a lot of emotional and anxiety issues in my private group. I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population. Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it. I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients. February 2020 - boom! Add in a global…
Lutetium 177Lu-Edotreotide Versus Best Standard of Care in Well-differentiated Aggressive Grade-2 and Grade-3 GastroEnteroPancreatic NeuroEndocrine Tumors (GEP-NETs) – (COMPOSE)
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…
New Clinical Trial – Testing Lutetium Lu 177 Dotatate in Patients With Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors
When I see a trial for Gastroenteropancreatic NETs (GEPNETs), I know that BP (Bronchopulmonary) NETs (includes Lung) are not included. When you look at the approval wording for the major treatments in use (PRRT Lutathera, Lanreotide), they appear to use the term GEPNETs making BP NETs the poor relative. Clearly there’s highly complex reasons why NETs react differently in different parts of the body. I can see that BP NET patients were involved in clinical trials for both of the mainstream treatments listed above. The drug approval process is also highly complex, and I can see from the wording that functional…
The GRAIL multi-cancer early detection test study
Updated 26 Apr 2025. The GRAIL Test (Galleri)Update USA 26th Apr 2025 GRAIL to Present New Data on Galleri® and its Methylation Platform at American Association for Cancer Research (AACR) Annual Meeting in Chicago, April 25-30, 2025. Detail to follow - read announcement here. Update UK 26th Apr 2025 The NHS-Galleri trial (NCT05611632) is a randomised controlled trial (RCT) of 140,000 participants being conducted in the NHS in England. The aim of the trial is to assess the clinical utility of the Galleri test to detect cancer early in a population of people who don’t have symptoms, when used alongside existing NHS…
Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021
Background. For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors. There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com)…
UK Travel Insurance – please give cancer patients a break!
Updated and reviewed 22nd October 2025 - UK travel insuranceOPINION.FOR UNITED KINGDOM (UK) NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients. One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned. This is based entirely on my own experience and decisions. I also declare no interest in any of the companies listed, i.e. I am not…
In the early days, I thought I was going to die
Opinion. It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability. BUT there is also the thought of dying of cancer. I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65. I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger…
Cancer-related fatigue (CRF) – The NET Effect
In my patient support group of almost 10,000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers. I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day. In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for…
Let’s Talk About NETs (#LetsTalkAboutNETs)
I do a lot of writing about NETs but I guess I've also done some talking too. Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings. Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides. Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal. I will keep adding them so they're all in one place. Published TalksAnn Edgar Trust - 31st August 2022I was invited by Gordon Mackay who runs…
11 years – I’m still here!
I finally made 11 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in…
Neuroendocrine Cancer: 48 hours before diagnosis
A week before my formal diagnosis, I had a liver biopsy (19th July 2010), and I repeat what I said in this post, for me it wasn't exactly a walk in the park. I had a mild anesthetic, I felt extremely uncomfortable throughout, and I was in pain. In fact, they did call in another nurse to help and her only job was to hold my hand in reassurance, (from what I remember). Most patients report no issues with their liver biopsy. I was sent home on 20th July with some painkillers, but that pain was gone within 24 hours.…
A person with Neuroendocrine Cancer fell into a hole and couldn’t get out……….
A person with Neuroendocrine Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper.A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper still…
A painting from America
Which one is the painting? (See separate originals below) I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail. Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. This time it was a parcel from USA but unlike the story "Letter from America" (see below), I was expecting this one. One of the NET community had selected one of my walk…
I have walked 500 miles and I will walk 500 more (….. sing along)
https://youtu.be/VKyWLAaStwM?t=53 At the beginning of the year, I signed up to walk 1000 miles in 2021. I can now confirm, I'm halfway there in 5 months. I have buffer time ..... but only if I keep going. By total coincidence it came on the anniversary of the completion of an 84 mile walk along Hadrian's Wall on 31st May 2014. 500 miles seems a lot more than that epic journey, but Chris and I did do around 300 miles in training to build up our stamina. Am I mad walking 1000 miles as a Stage 4 cancer patient? Not quite…
Clinical Trial: Survivin Long Peptide Vaccine (SurVaxM) in Treating Patients With Metastatic Neuroendocrine Tumors
What are cancer vaccines? I remember seeing a comment by a NET Specialist on twitter saying, "We need vaccines". This was in response to a tweet from another NET Specialist reporting dismal data from an immunotherapy drug for Neuroendocrine Carcinomas. In 2020/2021, the word vaccine has been used a lot, but this specialist was not inferring anti-viral treatment, he was talking about "cancer vaccines", an emerging discipline in science where vaccines act as an immunostimulant to treat cancer. This prompted me to look around and found this trial which may be of interest to you. However, before anyone gets too…
![Clinical Trial: [212Pb]VMT-α-NET Alpha-emitter – Phase 1/2a Clinical Trial](https://i0.wp.com/ronnyallan.net/wp-content/uploads/2021/05/VMT-alpha-theranostics-1.jpg?resize=400%2C280&ssl=1)
Clinical Trial: [212Pb]VMT-α-NET Alpha-emitter – Phase 1/2a Clinical Trial
[212Pb]VMT-α-NET Phase 1/2a Clinical Trial Uupdate 21 June 2025. Perspective Therapeutics Commences Recruitment for [212Pb]VMT-α-NET in the Third Dose Escalation Cohort of its Ongoing Phase 1/2a Clinical Trial June 21, 2025 [212Pb]VMT-α-NET Phase 1/2a study is advancing into Cohort 3 with a fixed administered dose that is up to 20% higher (6 mCi) than the dose administered to patients in Cohort 2 Dosimetry sub-study analysis presented at the Society of Nuclear Medicine & Molecular Imaging (SNMMI) 2025 Annual Meeting to advance utility of dosimetry in clinical development when considered with clinical data On track to submit further clinical updates to…
Dual Tracer (68Ga-DOTATATE and 18F-FDG) PET Imaging in G2 & G3 Gastroenteropancreatic Neuroendocrine Tumours
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…
Generic Somatostatin Analogues for Neuroendocrine Cancer
Generic Somatostatin Analogues. I've covered a lot about somatostatin analogues, particularly the two predominant approved drugs Lanreotide and Octreotide. Recently I found there are some for octreotide and as of Jul 2021, at least one for Lanreotide and is increasing. The reason for publication of this blog is because I was concerned to hear patients asking questions about generic lanreotide and octreotide in my private Facebook group where they were suggesting they could be of lesser quality. I studied that in more detail and here are the results of that research. What are generic drugs? Primer Companies take out exclusive rights…
Treatment for Neuroendocrine Cancer – a summary for patients
ScopeThis summary provides an overview of the types of therapy known for treating Neuroendocrine Cancer. They will have been approved at least by one national or regional approval agency, may not be available or approved in your own country; and may appear in clinical guidelines for the treatment of Neuroendocrine Cancer.Clinical trials will not be covered, although it's noted that some of the approved treatments listed may be in follow on trials either to prove new coverage or used in combination with another drug. For a list of clinical trials covered by the author, click here. This summary will not…
Ronny Allan Newsletter – 1st March 2021
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OverviewMany thanks for the support in February both on public pages and in my group - in fact the group's statistics are totally booming - that is helping a lot of people. My public sites still need some work and I'm hoping you can help with that. Of course, it's not helped by my finger injury which is holding me back. Read more about that problem below.Monthly update followsThe newsletter is now divided into several sections:1. External news of interest. …
Opinion: On Rare Disease Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?
On Rare Disease Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Well, there are three main things wrong with Neuroendocrine Cancer awareness. 1The 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. Two of many examples: Read more by clicking here or on the picture below. Let's do the math not the myth. There are some in the community who will suggest that some individual types…
My treatment is a pain in the butt!
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The post header is a bit ‘tongue in cheek’ (…. did you see what I did there?) I’m very happy to have this treatment every 4 weeks – I can think of far worse scenarios. When I was first diagnosed, the dreaded word ‘Chemo‘ was discussed. Chemo isn’t particularly effective in treating the lower grades of Neuroendocrine Cancer but it is used extensively at high grade and often in Grade 2 showing more effectiveness in pancreatic NETs. Looking back though,…
Ronny Allan – Top 10 for 2020 – Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 2020 was a different year due to the pandemic and it has spilled over into 2021 - this has had the effect of being slightly down on the 2019 figures. I also changed tack on one of my pages adding a 'coping' theme rather than writing new blog posts. This also had the effect of reducing blog hits for the year but very happy under the circumstances. Much of the effort in 2020 was directed in building up my private…
Neuroendocrine Cancer: Follow up tests and checks
Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, and even age.I have metastatic small intestine NET. In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that…
Opinion: On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?
On World Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Well, there are three main things wrong with Neuroendocrine Cancer awareness: If the community does not address these 3 issues, awareness will continue to fail and continue to flounder. I standby to help with the change, in fact, my work started in 2015 and continues. 1. To be told your cancer isn't really cancer is an insult. 2. To be called an animal is to be dehumanised. 3. To be rare when you're not, is a step back and is hindering access to clinical trial research. WE…
Ronny Allan Newsletter – 1st February 2021
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Overview 2021 is now underway and January has been an interesting month. The highs are the approval of more vaccines and I had the first of my own vaccinations on 31st January - click here to see the announcement on my Facebook page. The lows are slightly depressing growth figures on my biggest Facebook public page and less than normal blog figures for the month of January. I'll need to work on that in February and with your help, I…
The Invisibility of Appendiceal and Colorectal NETs – do the math
Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data. For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are…