A Christmas 2022 message from 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…
![A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs](https://i0.wp.com/ronnyallan.net/wp-content/uploads/2022/12/A-multicentre-validation-of-the-NETPET-score-.jpg?resize=400%2C280&ssl=1)
A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs
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…
Stereotactic body radiation therapy (SBRT) in the treatment of Neuroendocrine Neoplasms
What is Stereotactic Body Radiation Therapy (SBRT)? External beam radiotherapy has been around for a while. But the next generation equipment and techniques are gradually being deployed. It's a confusing area with many synonyms which I found when I wrote about the subject in a treatment summary for patients. Some of the sub-components/synonyms may be familiar to you and are often used interchangeably with SBRT; but are actually a brand name (e.g. Cyberknife) or a type (e.g. Proton Beam). You will not find SBRT mentioned in any Neuroendocrine Neoplasms (NENs) guidelines and that's because it is not a "standard of…
Lanreotide Ipsen: 13 more years
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 now,…
RonnyAllan.NET – Summary of November 2022
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…
In the news – new Neuroendocrine Tumour PET Fluorine-18 based ‘tracer’
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…
Metastatic Neuroendocrine Cancer: Incurable isn’t always terminal
OpinionWords are importantI 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 13 years (2023) cannot be considered terminal. Let's look…
The Inspirational Wilko Johnson: 12 July 1947 – 21 November 2022
Wilko playing at his last show. Oct 2022 in London. Aged 75. RIP Wilko Johnson - Neuroendocrine CancerI 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 back Home tour. Was…
Neuroendocrine Neoplasms (NEN) – genetic related syndromes
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…
My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!
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…
Ask More, Assume Less
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…
Neuroendocrine Cancer: 10 questions your dietitian will ask
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…
Incidentally, it’s not NET! SSTR PET e.g. Ga68/Cu64)
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…
RonnyAllan.NET – Summary of October 2022
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…
How are you, Doctor?
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…
Benign liver lesions and cysts – something or nothing?
BackgroundI wanted to focus on two terms "lesion" and "cyst" given these are mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told (or read before an appointment) this was 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 imaging tests…
Evolving Approaches in the Management of Neuroendocrine Tumor-Associated Carcinoid Syndrome
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…
New test of pancreatic cysts to help with cancer detection
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…
Evidence of disease but stable
Musings from a metastatic NET patient of 14 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…
Study of Lu-177-DOTATATE (Lutathera) in Combination With PARP Inhibitors in Inoperable/Metastatic Gastroenteropancreatic Neuroendocrine Tumors (GEP-NET)
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…
Opinion: On Rare Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer 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…
Prospective Phase II Trial of Prognostication by 68Ga-NOTA-AE105 uPAR PET in Patients with Neuroendocrine Neoplasms: Implications for uPAR-Targeted Therapy
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…
Living with cancer: 5 tips for facing things you can’t control
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…
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)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…
Clinical Trial: Phase 1b/3 Targeted Alpha-Emitter PRRT RYZ101 (Ac225)
Update 27th Dec 2023. Bristol Myers Squibb Adds Premier Radiopharmaceutical Platform with Acquisition of RayzeBio This is a significant acquisition and shows the importance and percevied potential of radioligand therapy (RLT) in the commercial pharma world. BMS is a huge company and they paid a huge price for this alpha-emmitter therapy, probably looking forward to exploiting the vast potential in NET, Prostate and other cancer types being considered for treatment using RLTs. Click on the link below to read more Bristol Myers Squibb - Bristol Myers Squibb Adds Premier Radiopharmaceutical Platform with Acquisition of RayzeBio (bms.com) [glossary_dictionary term=""][glossary_thesaurus term=""][glossary_translate term=""]Update…
Lung nodules – something or nothing?
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…
Awareness Post – Neuroendocrine Cancer in children and adolescents
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…
Thyroid nodules – something or nothing?
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 are incidental…
Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial
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…
![Prospective phase II trial of [68Ga]Ga-NODAGA-E[c(RGDyK)]2 PET/CT imaging of integrin for prognostication in patients with neuroendocrine neoplasms](https://i0.wp.com/ronnyallan.net/wp-content/uploads/2022/08/Prospective-phase-II-trial-of-68Ga.jpg?resize=400%2C280&ssl=1)
Prospective phase II trial of [68Ga]Ga-NODAGA-E[c(RGDyK)]2 PET/CT imaging of integrin for prognostication in patients with neuroendocrine neoplasms
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…
Curtis Crump: “If I’m going down, it won’t be without a fight.”
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…
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
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…
12 years – I’m still here!
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,…
Assessment of Clinical Response Following Atezolizumab and Bevacizumab Treatment in Patients With Neuroendocrine Tumors: A Nonrandomized Clinical Trial
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…
Neuroendocrine Cancer: diagnostic dilemmas in July 2010
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…
CT scan findings in the COVID era: Ground Glass Opacities (GGO)
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.…
Me and the other big C – June/July 2022
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…
New PET findings after COVID-19 vaccination: Keep Calm and Carry On?
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…
CAPTEM for Neuroendocrine Tumours
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 tumors. It is also being studied in the treatment of other types of cancer including in combination…
Clinical Trial: Dostarlimab, anti–PD-1 monoclonal antibody in Neuroendocrine Carcinoma
BackgroundFollowing the Americal Society of Clinical Oncology (ASCO) conference in June 2022 (ASCO is the biggest Oncology event in the world), the media widely featured the results of the Phase 2 clinical trial of the drug Dostarlimab, an anti–PD-1 monoclonal antibody. The media often looks for headline-grabbing stories and this was one of them. One UK TV outlet said they may have found the cure for cancer, which is a reckless statement when you look at the size and boundary of the clinical trial referenced. The detail is, that this was a phase 2 trial for "rectal adenocarcinoma", but specifically…
On the Cancer Journey, don’t forget to live your life
Many things in life can seem like a bump in the road or a journey along a windy road not sure where the next turn is. In some ways, a cancer diagnosis is another of these inopportune moments, albeit one with many facets. With incurable Neuroendocrine Tumours, many people need to be prepared for a long journey.Beware of the common trap of thinking in terms of all or nothing; or rushing to conclusions. Even with localised NETs which have been removed with curative intent, the journey may continue for a while until your doctors, and you are sure the destination has…
Histotripsy: A new technique that treats cancer using soundwaves
First published on April 25, 2022. Updated regularly. Last update 19th September 2025.If you just want to know what Histotripsy is, just head straight down to "Original Article" section19th September 2025. Australia Cholangiocarcinoma Foundation Australia have taken the lead and are campaiging for access to this innovative treatment. As NET patients in Australia, you can help. Read more by clicking here April 2025. Singapore Singapore's National Cancer Centre Singapore (NCCS)Search company and National University Cancer Institute, Singapore (NCIS)Search company are set to begin clinical trials of a revolutionary cancerSearch disease treatment called histotripsySearch drug in the second half of 2025. This groundbreaking technology uses precisely targeted ultrasound…
We are still here!
I'm always amazed at the responses to my post "I'm still here" and it has become a bit of a catchphrase I use, even in response to a question in my private group.What I see is that many of us are still here and I wanted to dedicate this post to those who frequently join in with my "I'm still here" posts.I'm glad you're still here too. Share or comment if you agree!We are still hereCheck out the fantastic response to my 5th year 'cancerversary' post. Click here to be inspired. Missed out 6th!!!Check out the fantastic response to my 7th…
My illness may be invisible, but I am not
The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years…
Clinical Trial: Mycapssa (octreotide capsules) for Neuroendocrine Tumours (drug discontinued, clinical trials cancelled – at least in EU countries)
UPDATE 26 February 2025 The European Commission withdrew the marketing authorisation for Mycapssa (octreotide) in the European Union (EU). The withdrawal was at the request of the marketing authorisation holder, Amryt Pharmaceuticals DAC, which notified the European Commission of its decision to permanently discontinue the marketing of the product for commercial reasons. Mycapssa was granted marketing authorisation in the EU on 2 December 2022 for the maintenance treatment in adult patients with acromegaly who have responded to and tolerated treatment with somatostatin analogues. The marketing authorisation was initially valid for a 5-year period. The marketing authorisation holder has committed to ensure that patients who are receiving treatment with…
Clinical Trial: Testing the Use of Chemotherapy After Surgery for High-Risk Pancreatic Neuroendocrine Tumors
An interesting trial centred on SW USA. The use of CAPTEM following surgery in high-risk pancreatic NETs (G2/G3 well-differentiated). Also includes the use of NETest at 3 time points, which is very interesting considering the recent withdrawal of Chromogranin A from US NET Guidelines. (Read about NETest here). Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide versus Observation in High-Risk Pancreatic Neuroendocrine Tumors (S2104) is a recently activated National Clinical Trials Network randomized phase II trial designed to compare CAPTEM chemotherapy versus observation following resection of pNETs (see Figure 2). Patients with well-differentiated grade 2 or 3 (Ki-67 up…
A Spotlight on Lung Neuroendocrine Neoplasms
WHO Classification of Tumours, 5th Edition, Volume 5: Thoracic TumoursThe aim of this spotlight is to provide a summary of the latest information on Lung Neuroendocrine Neoplasms (NEN) including the latest terminology, epidemiology data, and guidelines. This follows the publication of the Thoracic WHO classification 5th edition (2021): terminology and criteria for neuroendocrine neoplasms (Blue Book). This book has been anticipated to see if the panel compiling this follows the lead of the Gastroenteropancreatic Neuroendocrine Neoplasms (GEPNEN) editions issued in 2017 (Endocrine) and 2019 (Digestive systems) by removing the antiquated misnomer term ''Carcinoid" in line with the recommendations made by…
External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy
Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of candidates and predictions on who will benefit most are still not an exact science (....and possibly never will be). Neuroendocrine Neoplasms are a heterogenous grouping of cancers, and heterogeneity also includes (but is not limited to) age, stage, gender, functional/non-functional, and pre-existing condition constraints. All of this complicates the task of therapeutic decision-making and sequencing. The attached cohort study aims to bound the issue and describe a method of allocating a Clinical Score (CS) to…
Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)
What is the aim of this clinical trial?The aim of this single location trial in Imperial College London is to determine whether pre-treatment with ASTX727 results in re-expression of SSTR2 in patients with metastatic NETs, using 68Ga-DOTA-TATE to image epigenetic modification of the SSTR2 locus allowing subsequent treatment with Lutathera(i.e. PRRT). Patients entered into the study will receive ASTX727 orally up to 3 to 8 days prior to receiving Lutathera treatment. What is ASTX727?Oral Decitabine and Cedazuridine (ASTX727) is a DNA methyltransferase (DNMT) inhibitor currently being used in a trial to facilitate oral treatment of certain drugs for adults with intermediate…