12 Feb 2023
By Ronny Allan
0 Comments
A Newsletter from RonnyAllan.NET – 12th February 2023

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…
Read More
02 Feb 2023
By Ronny Allan
0 Comments
RonnyAllan.NET – Summary of January 2023 – Ronny Allan – Living with Neuroendocrine Cancer

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…
Read More
31 Jan 2023
By Ronny Allan
0 Comments
Phase I study of procaspase-activating compound-1 (PAC-1) in the treatment of advanced malignancies (incl NET)

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

Clinical Trials and Research,
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…
Read More
29 Jan 2023
By Ronny Allan
0 Comments
Dustin Diamond (January 7, 1977 – February 1, 2021)

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

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…
Read More
22 Jan 2023
By Ronny Allan
2 Comments
Neuroendocrine tumors are uncommon but definitely not rare

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…
Read More
14 Jan 2023
By Ronny Allan
0 Comments
Cancer Ablation

Cancer Ablation

Clinical Trials and Research, Patient Advocacy, Treatment, , , , ,
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…
Read More
11 Jan 2023
By Ronny Allan
3 Comments
Lactose intolerance – the NET Effect

Lactose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series, , ,
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. …
Read More
08 Jan 2023
By Ronny Allan
2 Comments
EUS Guided Ablation for small pancreatic NETs (Less than 2cm)

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

Clinical Trials and Research, 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…
Read More
03 Jan 2023
By Ronny Allan
2 Comments
RonnyAllan.NET – a review of 2022

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, , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
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…
Read More
01 Jan 2023
By Ronny Allan
0 Comments
RonnyAllan.NET – Summary of December 2022

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.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. …
Read More
31 Dec 2022
By Ronny Allan
4 Comments
Happy New Year from Ronny

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…
Read More
23 Dec 2022
By Ronny Allan
2 Comments
A Christmas 2022 message from Ronny

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…
Read More
14 Dec 2022
By Ronny Allan
0 Comments
A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

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, Treatment, , ,
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…
Read More
12 Dec 2022
By Ronny Allan
0 Comments
Stereotactic body radiation therapy (SBRT) in the treatment of Neuroendocrine Neoplasms

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

Clinical Trials and Research, Treatment, , , , , ,
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,…
Read More
08 Dec 2022
By Ronny Allan
0 Comments
Lanreotide Ipsen: 13 more years

Lanreotide Ipsen: 13 more years

Inspiration, Survivorship, Treatment, , , , ,
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…
Read More
02 Dec 2022
By Ronny Allan
0 Comments
RonnyAllan.NET – Summary of November 2022

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 More
01 Dec 2022
By Ronny Allan
0 Comments
In the news – new Neuroendocrine Tumour PET Fluorine-18 based ‘tracer’

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

Clinical Trials and Research, 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…
Read More
27 Nov 2022
By Ronny Allan
5 Comments
Metastatic Neuroendocrine Tumours: Incurable isn’t always terminal

Metastatic Neuroendocrine Tumours: Incurable isn’t always terminal

Awareness, Patient Advocacy, , ,
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…
Read More
25 Nov 2022
By Ronny Allan
0 Comments
The Inspirational Wilko Johnson: 12 July 1947 – 21 November 2022

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. 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…
Read More
24 Nov 2022
By Ronny Allan
0 Comments
Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient Advocacy, , , , , , , , , , , , , ,
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…
Read More
23 Nov 2022
By Ronny Allan
6 Comments
My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!

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

Awareness, Inspiration, Living with Neuroendocrine Cancer, , ,
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…
Read More
10 Nov 2022
By Ronny Allan
2 Comments
Ask More, Assume Less

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…
Read More
09 Nov 2022
By Ronny Allan
0 Comments
Neuroendocrine Cancer: 10 questions your dietitian will ask

Neuroendocrine Cancer: 10 questions your dietitian will ask

Diet and Nutrition, Patient Advocacy,
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…
Read More
05 Nov 2022
By Ronny Allan
0 Comments
Incidentally, it’s not NET! SSTR PET e.g. Ga68/Cu64)

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

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , ,
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…
Read More
03 Nov 2022
By Ronny Allan
0 Comments
RonnyAllan.NET – Summary of October 2022

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…
Read More
24 Oct 2022
By Ronny Allan
2 Comments
How are you, Doctor?

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…
Read More
23 Oct 2022
By Ronny Allan
0 Comments
Benign liver lesions and cysts – something or nothing?

Benign liver lesions and cysts – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy, , , , ,
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…
Read More
17 Oct 2022
By Ronny Allan
0 Comments
Evolving Approaches in the Management of Neuroendocrine Tumor-Associated Carcinoid Syndrome

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…
Read More
11 Oct 2022
By Ronny Allan
0 Comments
New test of pancreatic cysts to help with cancer detection

New test of pancreatic cysts to help with cancer detection

Clinical Trials and Research, 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…
Read More
10 Oct 2022
By Ronny Allan
0 Comments
Evidence of disease but stable

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , ,
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…
Read More
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)

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

Clinical Trials and Research, , , , ,
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…
Read More
30 Sep 2022
By Ronny Allan
0 Comments
Opinion: On Rare Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

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…
Read More
30 Sep 2022
By Ronny Allan
0 Comments
Prospective Phase II Trial of Prognostication by 68Ga-NOTA-AE105 uPAR PET in Patients with Neuroendocrine Neoplasms: Implications for uPAR-Targeted Therapy

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 Research, ,
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…
Read More
28 Sep 2022
By Ronny Allan
1 Comment
Living with cancer: 5 tips for facing things you can’t control

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

Inspiration, Patient Advocacy, Survivorship,
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…
Read More
23 Sep 2022
By Ronny Allan
0 Comments
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)

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 Research, , ,
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…
Read More
14 Sep 2022
By Ronny Allan
0 Comments
Clinical Trials – Targeted Alpha-Emitter PRRT RYZ101/RYZ401

Clinical Trials – Targeted Alpha-Emitter PRRT RYZ101/RYZ401

Clinical Trials and Research, , , , , , , , ,
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…
Read More
12 Sep 2022
By Ronny Allan
0 Comments
Lung nodules – something or nothing?

Lung nodules – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy
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…
Read More
10 Sep 2022
By Ronny Allan
2 Comments
Awareness Post – Neuroendocrine Cancer in children and adolescents

Awareness Post – Neuroendocrine Cancer in children and adolescents

Awareness, Inspiration, , , , ,
September is Childhood Cancer Awareness Month!  The newspapers and social media will no doubt be featuring many children's cancer articles. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. In 2020. this case came up in my google alerts and was related to a family who live not far from me in the south of England.  An…
Read More
04 Sep 2022
By Ronny Allan
0 Comments
Thyroid nodules – something or nothing?

Thyroid nodules – something or nothing?

Patient Advocacy, , ,
  I came across this excellent summary of Thyroid nodules from the American Association of Endocrine Surgeons which links to a similar European one.  It confirms much of what I wrote in my blog post "Troublesome Thyroids" in regard to my own thyroid issues.  I'm thankful to the AAES for promoting this on social media. I wanted to focus on the issue of Thyroid nodules given I see these mentioned all the time in my online patient group.  Clearly, when you already have a cancer diagnosis, the discovery of more issues on top of that is of concern to patients. Many…
Read More
01 Sep 2022
By Ronny Allan
0 Comments
Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Clinical Trials and Research, Treatment, ,
One of the most controversial subjects in Neuroendocrine Neoplasms is the management of small non-functional (asymptomatic) pancreatic NETs (NF-PanNEN).  In the most general terms, surgery is not recommended in tumours less than 2cm.  Allowances are made for those who are functional (i.e. symptomatic with one of several syndrome possibilities) or where the tumour is threatening important vessels (i.e. pre-emptive surgery).  Normally watching and waiting is recommended.  I wrote more detail in an earlier blog - Pancreatic Neuroendocrine Tumours - to cut or not to cut Some patients opt (or push for) a non-guideline surgery regardless and as one other patient…
Read More
30 Aug 2022
By Ronny Allan
0 Comments
Prospective phase II trial of [68Ga]Ga-NODAGA-E[c(RGDyK)]2 PET/CT imaging of integrin for prognostication in patients with neuroendocrine neoplasms

Prospective phase II trial of [68Ga]Ga-NODAGA-E[c(RGDyK)]2 PET/CT imaging of integrin for prognostication in patients with neuroendocrine neoplasms

Clinical Trials and Research,
August 25, 2022 -- A new gallium-68 PET radiotracer appears effective for predicting higher risk of disease progression and mortality in patients with neuroendocrine tumors, according to a study published August 18 in the Journal of Nuclear Medicine. Conclusion: Tumor lesion uptake of 68Ga-NODAGA-E[c(RGDyK)]2 was evident in patients with all grades of NEN. High uptake was associated with a poorer prognosis. Further studies are warranted to establish if 68Ga-NODAGA-E[c(RGDyK)]2 PET/CT may become a prediction tool for identification of patients eligible for treatments targeting integrin αvβ3. Why is this different to regular Ga68 Dotatate?  In the simplest of terms, Ga68 Dotatate is targeting somatostatin receptors which…
Read More
05 Aug 2022
By Ronny Allan
0 Comments
Curtis Crump: “If I’m going down, it won’t be without a fight.”

Curtis Crump: “If I’m going down, it won’t be without a fight.”

Clinical Trials and Research, Inspiration, Patient Advocacy, Survivorship, , , , , , , ,
Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell.  Given 6 months to live, he refused to accept that prognosis and looked elsewhere. He found a top hospital that directed him to an established clinical trial of immunotherapy. Curtis has a high grade aggressive type of Neuroendocrine Cancer called Neuroendocrine Carcinoma (with a Colon primary).  The immunotherapy has some effect to the point that he was able to have surgery, a treatment option not always available to poorly differentiated Neuroendocrine Carciomas. His story is relevant to many people's experiences across the broad spectrum of…
Read More
27 Jul 2022
By Ronny Allan
0 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

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. Read more about Capecitabine (combo with Temozolomide) by clicking here or on the photo below. The abstract from the Indian study…
Read More
26 Jul 2022
By Ronny Allan
14 Comments
12 years – I’m still here!

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
I finally made 12 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 with the help of Chris my wife of 47 years. 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,…
Read More
20 Jul 2022
By Ronny Allan
0 Comments
Assessment of Clinical Response Following Atezolizumab and Bevacizumab Treatment in Patients With Neuroendocrine Tumors: A Nonrandomized Clinical Trial

Assessment of Clinical Response Following Atezolizumab and Bevacizumab Treatment in Patients With Neuroendocrine Tumors: A Nonrandomized Clinical Trial

Clinical Trials and Research, , , , , , , ,
Background Well differentiated NETs have been described as an "immunological desert" in recent years mainly due to the poor response rate data coming out of clinical trials of immunotherapy drugs.  Poorly differentiated NEC has favoured better but mainly in the more obscure types.  Which is why these data of a combo treatment containing one immunotherapy drug caught my eye. What is atezolizumab?  It is a type of monoclonal antibody and a type of immune checkpoint inhibitor.  It's a Programmed cell death protein -1 (PD-1)/ Ligand 1 (PD-L1) inhibitor.  A drug that binds to the protein PD-L1 to help immune cells…
Read More
19 Jul 2022
By Ronny Allan
3 Comments
Neuroendocrine Cancer: diagnostic dilemmas in July 2010

Neuroendocrine Cancer: diagnostic dilemmas in July 2010

Awareness, , , , , , , , , , ,
Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010.   I guess one of the reasons I do this is to be thankful that I'm still alive but also, I have a sneaking suspicion that I'm still trying to remember small detail from that period.  It had felt surreal ever since 8th July when the secondary care investigating doctor sent me for a CT scan leading to a biopsy on 19th July. That scan and subsequent biopsy were to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just…
Read More
17 Jul 2022
By Ronny Allan
3 Comments
CT scan findings in the COVID era: Ground Glass Opacities (GGO)

CT scan findings in the COVID era: Ground Glass Opacities (GGO)

Patient Advocacy, ,
The COVID-19 pandemic filled our vocabularies with more medical terms than most of us would ever hear about, but some were familiar.  It soon became clear that CT scans were a useful tool to check for COVID-19.  One 2022 study showed that COVID-19 shares some features with other viral types of pneumonia, despite some differences. They commonly present as "ground glass opacities" (GGO) along with vascular thickening, air bronchogram and consolidations. Also, they differ by age, disease severity, and outcomes among COVID-19 patients.  GGOs refer to findings CT scans of COVID-19 patients that can help diagnose and monitor the infection.…
Read More
12 Jul 2022
By Ronny Allan
2 Comments
Me and the other big C – June/July 2022

Me and the other big C – June/July 2022

Living with Neuroendocrine Cancer, Survivorship
Recently, Chris and I felt lucky not to have caught covid since the pandemic started in early 2020. That said, not that we would know in the early days before tests were available.  We both had bad colds/flu in March 2020 but we will never find out if that was covid or not.  I wrote about this experience in a diary I maintained over that period. It was therefore a bit of a shock when both of us finally tested positive in the middle of 2022, despite surviving unscathed through several waves since the pandemic began in early 2020.  To…
Read More
21 Jun 2022
By Ronny Allan
0 Comments
New PET findings after COVID-19 vaccination: Keep Calm and Carry On?

New PET findings after COVID-19 vaccination: Keep Calm and Carry On?

Patient Advocacy, , ,
After a few months of introducing C-19 vaccines, many cases of false-positive lymph nodes were reported on nuclear PET scans, some of which led to unnecessary biopsies and unnecessary worry for the patients concerned. According to Mayo Clinic, the positive nodes were on the same side as the vaccine shot in the cases where the injection site was known.  Mayo added that some cases had uptake in the deltoid muscle, which is normally where vaccine injections are given, leading to increased suspicion of false positive in cases where uptake was in both deltoid muscle and axillary lymph nodes (armpit).  At…
Read More
15 Jun 2022
By Ronny Allan
0 Comments
CAPTEM for Neuroendocrine Tumours

CAPTEM for Neuroendocrine Tumours

Clinical Trials and Research, Treatment, , , , , , ,
What is CAPTEM?  Capecitabine is an oral drug used alone or with other drugs to treat certain types of colorectal cancer and breast cancer. It is also being studied in the treatment of other types of cancer including in combination with a second drug. Capecitabine is taken up by cancer cells and breaks down into fluorouracil, a substance that kills cancer cells. Xeloda is a type of antimetabolite. Also called Xeloda. Temozolomide is an oral drug used to treat adults with certain types of brain tumours. It is also being studied in the treatment of other types of cancer including…
Read More