Ronny Allan - Living with Neuroendocrine Cancer

01Dec 2022 by Ronny Allan No Comments

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 of A's South Campus have been using a state-of-the-art cyclotron—a machine that already supplies the province with medical isotopes used in diagnostic scans—to create a new imaging compound that will…

27Nov 2022 by Ronny Allan 5 Comments

Incurable isn’t terminal

Patient Advocacy

OpinionWords 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 after 12 years. 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 12 years cannot be considered terminal. Let's look at some definitions which are generally agreed with similar wording wherever you look: Terminal Cancer Terminal cancer refers to cancer that can’t be cured or treated. It’s sometimes also called end-stage cancer.…

25Nov 2022 by Ronny Allan No Comments

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. [caption id="attachment_14806" align="aligncenter" width="785"] Wilko Johnson performing at The Royal Albert Hall, London on 26th September 2017[/caption] 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 supposed to be Wilko's swan song. He opted for…

24Nov 2022 by Ronny Allan No Comments

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient Advocacy

Definitions - the differences between Hereditary vs Familial vs Genetic DisordersI wanted to start with these definitions because people may unintentionally use these three terms interchangeably which is sometimes not the correct use of the information being conveyed. However, after studying this subject, I can tell you it is a very complex area and difficult to explain and then understand in a single paragraph. Even these widely accepted definitions don't make it any more understandable! The terms ‘hereditary’ and ‘familial’ look like synonyms and are frequently used interchangeably but are two different concepts. ‘Hereditary’ is most commonly used when referring to diseases with a known genetic cause whereas ’Familial’ disorders are those which appear to have a genetic component, affecting more family members than would be expected by chance alone. However,…

18Nov 2022 by Ronny Allan 1 Comment

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient Advocacy

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions to very aggressive versions similar to many dangerous adenocarcinomas. Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex…

10Nov 2022 by Ronny Allan 2 Comments

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 going backward on this issue which I find bizarre. Certain European countries are also lagging. The phrase "Ask More and "Assume Less" is a great punchline and fits many of the…

09Nov 2022 by Ronny Allan 6 Comments

Piss off Cancer, it’s been 12 years since my “big surgery”

Awareness, Inspiration

I'm still hereI was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention, didn’t have a much grander announcement than the one presented to me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if a much grander announcement…

09Nov 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: 10 questions your dietitian will ask

Diet and Nutrition, Patient Advocacy

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 to Dietitians I'm certain this is an unmet need across the world, even in rich and well-developed countries. Without any disrespect for accredited dietitians, specialist knowledge of NENs is really important given…

07Nov 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: Beware But Be Aware

Awareness

An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer. Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations), it will try to break out via your blood and lymphatic systems. It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones, and any…

05Nov 2022 by Ronny Allan No Comments

Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Incidental Findings in SSTR PETSomatostatin 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 for an unrelated reason.” An increase in the utilisation of imaging examinations over the past three decades has led to a marked increase in the number of findings detected that are unrelated to the…

03Nov 2022 by Ronny Allan No Comments

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 to read more:[caption id="attachment_36751" align="aligncenter" width="640"] Click on the picture to read more[/caption]Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER hadSteve Jobs – the most famous Neuroendocrine…

02Nov 2022 by Ronny Allan 1 Comment

Alpha-emitter PRRT: A Phase 2 Open Label Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE in PRRT Naive Subjects With SSTR Expressing NET

Clinical Trials

Ebrahim S Delpassand, Izabela Tworowska, Rouzbeh Esfandiari, Julien Torgue, Jason Hurt, Afshin Shafie and Rodolfo Núñez Journal of Nuclear Medicine, January 2022, jnumed.121.263230; DOI: https://doi.org/10.2967/jnumed.121.263230 Update 16th May 2023. Trial’s Objective Response Rate Endpoint Already Achieved. RadioMedix and Orano Med, two clinical stage radiopharmaceutical companies, today announced that the last patient has been dosed in the Phase II trial of the targeted alpha emitter therapy, 212Pb-DOTAMTATE (AlphaMedix™). This trial is being conducted to evaluate the safety and effectiveness of AlphaMedix™ in peptide receptor radionuclide therapy (PRRT) of naive patients with somatostatin receptor-expressing neuroendocrine tumors (NET), regardless of the location of the primary tumor. Top-line data from the trial is expected in mid-2024. Remarkably, based on data already collected, the objective response rate (ORR) endpoint has already been achieved and is more than twice as high as the current standard of care. Read more hereWhat…

24Oct 2022 by Ronny Allan 2 Comments

How are you, Doctor?

Awareness, Patient Advocacy

When I was a kid growing up in the 50s/60s, I have vague recollections of seeing doctors from time to time. It always felt like the doctor was a highly respected person who knew everything and was someone to whom it was safe to divulge your most intimate secrets! I think for me, that perception continued throughout my time in the military and beyond. I suspect as you mature in age, you become more relaxed about seeing a doctor and you begin to realise they are human beings just like you. That said, the relationship is normally always a professional one, even today. Throughout your life, many people greet you in the street or on the phone often with the words "How are you?". You will probably say "fine" or "good…

23Oct 2022 by Ronny Allan No Comments

Benign liver lesions and cysts – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy

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 found during diagnostic scans. Sometimes these are described by doctors as "liver lesions". Lesion is defined as "An area of abnormal tissue. A lesion may be benign (not cancer) or malignant (cancer)". The majority of liver lesions are noncancerous (benign) and will not be related to Neuroendocrine Cancer. Many lesions are detected during imaging tests for unrelated health conditions. Although most lesions aren’t harmful, it’s still critical to receive a proper diagnosis. This is particularly important if these lesions are in addition to known cancerous ones included with…

19Oct 2022 by Ronny Allan 3 Comments

Understanding your Somatostatin Receptor (SSTR) PET Results

Patient Advocacy

Background In my online patient group, there is constant discussion about the meaning of both pictures and words on scan reports. The one that seems to cause the most confusion is PET scans, mainly somatostatin receptor (SSTR) PETs such as Ga68 and Cu64 variants. Worth adding that it's the addition of a nuclear tracer that makes PETs seem different. Generally speaking, the PET hardware is essentially the same. Most have a built-in CT scan, much less frequently an MRI scan. Confusion is often triggered by healthcare system processes where the patient receives the report before the appointment to discuss the results with the referring physician. Cue anxiety because the average patient reader does not understand and certain words cause them to worry, often unnecessary worry. The patient then becomes impatient…

17Oct 2022 by Ronny Allan No Comments

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 link to watch each one) Episode 1 - Overview of Neuroendocrine Tumors (NETs) (onclive.com) Episode 2 - Overview of Carcinoid Syndrome (CS) (onclive.com) Episode 3 - Overview of Carcinoid Heart…

14Oct 2022 by Ronny Allan No Comments

The Hidden Pheochromocytoma

Awareness, Patient Advocacy

I've written a few times about Pheochromocytomas and Paragangliomas, allegedly rare types of Neuroendocrine Tumour (NET). I've also written about various hidden diagnoses of NET cases where they are eventually found in living patients having been 'hidden' within other diseases, i.e. misclassified in cancer registries or even not classified as cancer at all. If you read any medical site (including hospitals which treat Pheochromocytoma) you will note statements along the lines of "mostly benign" - so it's possible the incidence rate is vastly understated on this factor alone.The other interesting data I found is that many are not discovered until autopsy. Perhaps some people were asymptomatic or maybe they just stoically put up with their symptoms. Perhaps their symptoms were put down to routine illness such as hypertension, maybe imaging…

11Oct 2022 by Ronny Allan No Comments

New test of pancreatic cysts to help with cancer detection

Clinical Trials, 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 are benign, but a small fraction will transform into cancer, including pancreatic NET. A molecular test developed by the University of Pittsburgh is able to distinguish benign pancreatic cysts from…

10Oct 2022 by Ronny Allan No Comments

Evidence of disease but stable

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

Musings from a metastatic NET patient of 12 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 hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry. Why can't doctors just…

06Oct 2022 by Ronny Allan 3 Comments

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

Clinical Trials

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 (mostly second line). Read more click here.What is Olaparib and what does it do in conjunction with Lutathera?Olaparib (AZD-2281, trade name Lynparza) is an FDA-approved targeted therapy for cancer, developed…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

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

Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list: 1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list. 2. For numerical terms, please click on the hashtag (#) symbol in the A-to-Z strip. 3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary,…

30Sep 2022 by Ronny Allan No Comments

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 needs bringing into 2021. 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.…

30Sep 2022 by Ronny Allan No Comments

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

Clinical Trials

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 protein on the cell surface, is controlled by many factors in tumorigenesis and is expressed in many tumor tissues. What is different about targeting uPAR instead of somatostatin receptors? uPAR expression…

28Sep 2022 by Ronny Allan 1 Comment

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 my own way of handling these test and surveillance events might help others. So based on my own experience, here are my 5 tips to face things you cannot control. 5…

23Sep 2022 by Ronny Allan No 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)

Clinical Trials

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 in preclinical laboratory and animal models.Interestingly, the principal investigator is listed as a NET Specialist. No conclusions should be drawn from this knowledge, and I have no information to suggest…

19Sep 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Inspiration, Patient Advocacy

Self Pity or Self Help? I'm not one for wallowing in self-pity or accepting invites to pity parties. It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in the world because I'm known for helping. I admit that some people are beyond my type of help, but I always suggest they should speak to specialists in the area…

18Sep 2022 by Ronny Allan No Comments

Opinion: Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Patient Advocacy, Survivorship

An opinion postCureI once wrote an article called "Neuroendocrine Cancer - can it be cured". In that article, I covered the fact that most stage IV cancers (all cancers) are generally considered incurable, but I also added my own view of NETs being treatable in the same way a chronic disease would be. At the other end of the scale, I covered guidelines where doctors talk about removing tumours with "curative intent", clearly in reference to small localized tumour scenarios. I'm pretty sure in my own mind that this does happen. As one example you only need to look at the epidemiology data on (say) small low-grade low-stage appendiceal and rectal NETs; to know that they rarely metastasise/recur, translated into guidelines as needing "no follow up" related to size and…

14Sep 2022 by Ronny Allan No Comments

Clinical Trial: Phase 1b/3 Targeted Alpha-Emitter PRRT RYZ101 (Ac225)

Clinical Trials

Update 31st May 2023 - RayzeBio doses first patient on Phase 3 ACTION-1 Study, Evaluating RYZ101 (Actinium-225 DOTATATE) in Neuroendocrine Tumors RayzeBio, Inc., a targeted radiopharmaceutical company developing an innovative pipeline against validated solid tumor targets, today announced that the first patient has been dosed in the Phase 3 trial of RYZ101 in patients with SSTR+ gastroenteropancreatic neuroendocrine tumors (GEP-NETs) that have progressed following prior Lutetium-177 labelled somatostatin analogue therapy. “Patients with GEP-NETs have very limited options upon progression after Lutetium-177 labelled somatostatin analogue therapy,” said Dr. Thomas Hope, M.D., Vice Chair of Clinical Operations and Strategy in the Department of Radiology. “With existing results using Actinium-225 DOTATATE suggesting clinical benefit, we are excited to be moving this therapy forward in the ACTION-1 study.” The Phase 3 trial is…

12Sep 2022 by Ronny Allan No Comments

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 are a sign of cancer in the lung. They can show up on imaging scans like X-rays or CT scans and are only found when doctors are checking for something…

10Sep 2022 by Ronny Allan 2 Comments

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 8-year-old with Paraganglioma had lost an eye due to the location of the tumour. It is absolutely heartbreaking to read but it's amazing how resilient children can be. The Facebook…

05Sep 2022 by Ronny Allan 2 Comments

Eat that doughnut!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy

I was recently reminded of a post I wrote called "The Other 5 Es". I later changed the name to "The 6 Es". The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many.I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut". What I didn't confirm was that I was using a metaphor. I was inferring that we shouldn't unnecessary restrict our lives when something is low risk, particularly when something we are told is a 'no no' has been said out of context and…

04Sep 2022 by Ronny Allan No Comments

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 are incidental and only found because of imaging following the cancer diagnosis. This is an important point because an average of more than 50% of people over the age of 60 have…

01Sep 2022 by Ronny Allan No Comments

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

Clinical Trials, 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 advocate put it, "they will surgeon shop until they find one who will do it". While the guidelines are just that (guidelines), decisions on surgery in such cases must be…

30Aug 2022 by Ronny Allan No 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

Clinical Trials

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 are known to be expressed by most NETs, it can help indicate if treatment using somatostatin analogue therapy is feasible. Integrin αvβ3 recognizing cell surface integrins is upregulated on endothelial…

23Aug 2022 by Ronny Allan 1 Comment

Neuroendocrine Cancer: At least 50 shades of grey

Awareness, Patient Advocacy

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............". The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only one syndrome. Once again, this is partly related to the lingering use of the term Carcinoid. Even within the community, so many people make blanket statements about Neuroendocrine Cancer which are misleading, e.g."they're all…

05Aug 2022 by Ronny Allan No Comments

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

Clinical Trials, 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. Although the story I am attaching says "Neuroendocrine Tumors" throughout, with that prognosis and the treatment he received (chemotherapy and immunotherapy), I'm reasonably confident he had a Neuroendocrine Carcinoma (Colon primary) or a Grade 3 Well Differentiated NET. Nonetheless, his story is relevant to many people's experiences across the broad spectrum of Neuroendocrine Neoplasms (NENs). And if I am right in my assumption, even with a poorly differentiated type, there is the hope of a better prognosis. Wishing Curtis the very best. Read his story below.(Please see my disclaimers…

28Jul 2022 by Ronny Allan 1 Comment

The trouble with the NET is that it can spread ……. false hope

Patient Advocacy

Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer and how to treat it can lead to needless worry and even hinder good prevention and treatment decisions. Even food and nutritional supplements fall into this area. I see these things frequently in my own community, I don't like and I try my hardest to avoid these myths appearing in my patient group and on my public pages. Annoyingly, some of it comes from unsuspecting patients who are simply sharing it from another place. People need to think carefully before sharing this sort of thing. It's…

27Jul 2022 by Ronny Allan No Comments

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

Clinical Trials

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

26Jul 2022 by Ronny Allan 14 Comments

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, and settled in my liver and beyond including, strangely, in my left armpit. It was incurable. And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction…

24Jul 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance (scans and other imaging, tests, etc) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more worrying situation in my opinion. Surveillance is meant in the widest context, it can range from a telephone appointing asking questions and getting answers, all the way through to scanning. Don't…

20Jul 2022 by Ronny Allan No Comments

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

Clinical Trials

BackgroundWell 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 kill cancer cells better and is used to treat many different types of cancer, including cancers that express PD-L1. Atezolizumab is used alone or with other drugs to treat certain types of…

19Jul 2022 by Ronny Allan 3 Comments

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 was to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just something chipping away over the years. My diagnostic triggers were incidental in many ways and a reaction to me telling a GP Nurse that I thought I'd lost a bit of weight. I…

17Jul 2022 by Ronny Allan 3 Comments

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. A similar study published early on in the pandemic came up with similar conclusions in regard the presentation on CTs of the chest. Another study said that while it's important…

12Jul 2022 by Ronny Allan 2 Comments

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 this day, we (mostly me) remain slightly paranoid about protecting ourselves. e.g. I have maintained the habit of not touching door handles with my bare hands to this day. My…

21Jun 2022 by Ronny Allan No Comments

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 least one case was found in the supraclavicular nodes (clavicle area), but it was noted that might have been a stronger immune reaction due to the patient undergoing immunotherapy.This issue had…

19Jun 2022 by Ronny Allan No Comments

Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors

Clinical Trials

What is PRRT? I'm guessing most of my readers know what Peptide Receptor Radiotherapy (PRRT) is. But for those new to this field, read more here What is Triapine? Triapine is a ribonucleotide reductase (RNR) inhibitor, I.e. it helps repair DNA. When I research this drug, I can see it is used in numerous examples of clinical trials in an anti-cancer setting alongside radiotherapy and chemotherapy, in many cancers. Triapine in NET There is currently a trial of Triapine with Lutathera (PRRT) (11 major US hospitals). This study was testing the hypothesis that triapine is an effective radiation sensitizer that can be safely combined with peptide receptor radionuclide therapy and can improve antitumor activity of Lutetium Lu 177 Dotatate, e.g. increase the objective response rate (ORR) above that found in…

15Jun 2022 by Ronny Allan No Comments

CAPTEM for Neuroendocrine Tumours

Clinical Trials

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 with a second drug. Temozolomide damages the cell’s DNA and may kill cancer cells. It is a type of alkylating agent. Also called Temodar.Capecitabine (brand name Xeloda) plus Temozolomide (brand…

12Jun 2022 by Ronny Allan 7 Comments

Living with Cancer: Don’t cross the bridge until you come to it

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

When I read comments in my private Facebook community group, I can see that many people do get concerned about upcoming scans and other rest results. I think the imaging results cause the most angst because those are probably the most telling results someone with Neuroendocrine Cancer will get. Has it grown, has it shrunk? What if ....... Many patients experience fear, anxiety, and worry while waiting for imaging test results. It’s a completely normal and understandable feeling. How can you conquer this fear or is it just something you have to live with? Personally, I look at things more clinically than the average person, perhaps that's just the way my brain is wired. For example, I try not to be concerned about results over which I have little control once the…

08Jun 2022 by Ronny Allan No Comments

Clinical Trial: Dostarlimab, anti–PD-1 monoclonal antibody in Neuroendocrine Carcinoma

Clinical Trials, Treatment

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 locally advanced mismatch repair-deficient (dMMR) rectal cancer, allowing them to avoid surgery, chemotherapy, and radiation, at least for the time being. Nonetheless, the complete response in all 12 was clinically…

07Jun 2022 by Ronny Allan No Comments

Low and High Residue Foods

Diet and Nutrition, Patient Advocacy

It's clear that no single diet is suitable for everyone, there are just too many variables in Neuroendocrine Cancer. They are a heterogeneous grouping of cancers with different issues; and to a certain extent, different types and different circumstances can throw up different problems. If you’re not careful, you can go into the 'nth degree' on this subject, so tailored advice from a well-versed registered dietitian is always the preferred option. I wanted to look at particular circumstances in this article as a low residue diet may be unsuitable for many Neuroendocrine Cancer patients. A low residue diet is sometimes called a low fibre diet. For others, it might be something they encounter during procedures such as a Colonoscopy or before and after bowel surgery. It could also have some…