Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy
Opinion PostI've lost count of the number of questions I receive online or are posted in my private Facebook support group.  The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer" (Neuroendocrine Cancer is used as a placeholder - several naming terms are used).  The answer is almost impossible.  Here are a few of the issues:1. Not everyone has access to a NET specialist let alone a Dietitian who specialises in NET. So they come to patient groups to ask. The responses are usual multiple and widely different.2. The heterogeneity of Neuroendocrine Neoplasms extends to dietary issues too.  No single diet suits everyone with a Neuroendocrine Neoplasm.  Many people won't have any dietary issues at all (but knowing the potential is still…
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Q. The best diet for Neuroendocrine Cancer?  A. The one that works for you.

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Diet and Nutrition, Patient Advocacy
Opinion PostI've lost count of the number of questions I receive online or are posted in my private Facebook support group.  The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer" (Neuroendocrine Cancer is used as a placeholder - several naming terms are used).  The answer is almost impossible.  Here are a few of the issues:1. Not everyone has access to a NET specialist let alone a Dietitian who specialises in NET. So they come to patient groups to ask. The responses are usual multiple and widely different.2. The heterogeneity of Neuroendocrine Neoplasms extends to dietary issues too.  No single diet suits everyone with a Neuroendocrine Neoplasm.  Many people won't have any dietary issues at all (but knowing the potential is still…
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Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Patient Advocacy
Opinion PostI've lost count of the number of questions I receive online or are posted in my private Facebook support group.  The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer" (Neuroendocrine Cancer is used as a placeholder - several naming terms are used).  The answer is almost impossible.  Here are a few of the issues:1. Not everyone has access to a NET specialist let alone a Dietitian who specialises in NET. So they come to patient groups to ask. The responses are usual multiple and widely different.2. The heterogeneity of Neuroendocrine Neoplasms extends to dietary issues too.  No single diet suits everyone with a Neuroendocrine Neoplasm.  Many people won't have any dietary issues at all (but knowing the potential is still…
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Lutetium 177Lu-Edotreotide Versus Best Standard of Care in Well-differentiated Aggressive Grade-2 and Grade-3 GastroEnteroPancreatic NeuroEndocrine Tumors (GEP-NETs) – (COMPOSE)

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

Clinical Trials
Lutetium 177Lu-Edotreotide Versus Best Standard of Care in Well-differentiated Aggressive Grade-2 and Grade-3 GastroEnteroPancreatic NeuroEndocrine Tumors (GEP-NETs) - (COMPOSE) is a new trial commencing September 2021.I've written about this product before.  It's a synthetic, low-energy beta-emitting isotope of Lutetium (Lutathera) which is already an approved product.  Attaching the radiopharmaceutical Solucin® is administered as an intravenous infusion, specifically targeting and destroying the tumor cells with ionizing radiation, i.e. it works in exactly the same way as conventional PRRT.  Read more by clicking this link plus news of an existing trial in Phase 3 - Phase 3 Clinical Trial of 177Lu-Edotreotide (Solucin®) – COMPETE for GEPNETs Brief Summary of the COMPOSE trial: This is an Open-label, Multicentre Study. Its purpose is to evaluate the efficacy, safety & patient-reported outcomes of peptide receptor…
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New Clinical Trial – Testing Lutetium Lu 177 Dotatate in Patients With Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors

New Clinical Trial – Testing Lutetium Lu 177 Dotatate in Patients With Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors

Clinical Trials
When I see a trial for Gastroenteropancreatic NETs (GEPNETs), I know that BP (Bronchopulmonary) NETs (includes Lung) are not included.  When you look at the approval wording for the major treatments in use (PRRT Lutathera, Lanreotide), they appear to use the term GEPNETs making BP NETs the poor relative.  Clearly there’s highly complex reasons why NETs react differently in different parts of the body.  I can see that BP NET patients were involved in clinical trials for both of the mainstream treatments listed above.  The drug approval process is also highly complex, and I can see from the wording that functional BP NETs with carcinoid syndrome can qualify at least for somatostatin analogues (Lanreotide and Octreotide).  That is not to say BP NET patients cannot get access to these treatments, I…
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The GRAIL multi-cancer early detection test study

The GRAIL multi-cancer early detection test study

Clinical Trials
  Edit 13th Aug 2021.  Major Announcement from UK.  The NHS will today launch the world’s largest trial of a revolutionary new blood test that can detect more than 50 types of cancer before symptoms appear. The first people to take part will have blood samples taken at mobile testing clinics in retail parks and other convenient community locations. The Galleri(tm) test checks for the earliest signs of cancer in the blood and the NHS-Galleri trial, the first of its kind, aims to recruit 140,000 volunteers in eight areas of England to see how well the test works in the NHS. Read more here.  "The earlier that cancer can be found, the higher the chance of successful treatment and survival. Yet, too often cancer goes undetected until it has progressed…
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Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials, Patient Advocacy, Survivorship, Treatment
Background.  For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors.  There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com) Episode 2 - Neuroendocrine Tumor Pathogenesis and Molecular Testing Expert insight on the pathogenesis of neuroendocrine tumors and the best use of molecular testing to inform treatment decisions.…
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UK Travel Insurance – are cancer patients a cash cow?

UK Travel Insurance – are cancer patients a cash cow?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
OPINION FOR UK NEUROENDOCRINE CANCER PATIENTS (probably applies to all cancer patients in practice). Some of my findings are potentially applicable in other countries. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned. This is based entirely on my own experience and decisions. Background. Ronny Allan was diagnosed with Stage IV Neuroendocrine Cancer in 2010. Following several surgeries and procedures in the first 2 years after diagnosis, he remains under surveillance, and he remains on a 28-day treatment plan. I've always had travel insurance, incidents or accidents overseas can costs thousands, many thousands in certain countries. Of course if you are fit and healthy (and young) it's not too expensive. Everything in the insurance industry is based on risk -…
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I thought I was going to die.  I didn’t

I thought I was going to die. I didn’t

Inspiration, Patient Advocacy, Survivorship
I thought I was going to die, I didn't Opinion.  It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability.   BUT there is also the thought of dying of cancer.  I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65.  I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger person.It's known that the lower grades of Neuroendocrine Tumours (NETs) have fairly good outlooks but there are still many factors at…
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Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Treatment
Small Intestine Neuroendocrine Tumours (SI NET) are one of the most common types of Neuroendocrine Cancer, and also one of the most challenging to diagnose and then treat. Patients can have a very good outlook even when presenting with metastatic disease.  However, it's true to say that some NET centres of excellence (CoE) or multi-disciplinary team (MDT) see a lot of SI NET patients have built up considerable experience in treating them, including the use of surgery.  The surgical challenges are such that a surgeon not experienced in treating these cases may shy away or think they are inoperable, whereas MDTs or CoEs potentially have the experience available to operate or to make sound judgements based on their own experience.  At the very least, they can offer a second opinion. …
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Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
In my patient support group of 6000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers.  I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day.  In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for quite a while leading up to the diagnosis.  That said, I gradually got back into old ways after diagnosis and pretty much continued to put my tiredness down to the same…
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Let’s Talk About NETs (#LetsTalkAboutNETs)

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Talking to Ipsen 2016 Some of my talks I do a lot of writing about NETs but I guess I've also done some talking too.  Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings.  Others were either not recorded or I don't have access to them for various reasons.  I'll list some of them below for your perusal. Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I was invited by Ipsen to help produce some videos for a website they were building - it's called "Living with NETs" and I also helped them, along with other patients, with the requirements for the content.  The video below was my…
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11 years – I’m still here!

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship
11 years - I'm still here! I finally made 11 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in my left armpit. It was incurable. And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction in the general area…
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Neuroendocrine Cancer: 48 hours before diagnosis

Neuroendocrine Cancer: 48 hours before diagnosis

Humour, Inspiration
I took this photo on the evening of 24th July 2021 in the New Forest I had a liver biopsy on 19th July 2010, and I can tell you now, it wasn't exactly a walk in the park. I had a mild anaesthetic, I felt extremely uncomfortable throughout, and I was in pain. In fact, they did call in another nurse to help and her only job was to hold my hand in reassurance. I was not yet diagnosed.  Most patients report no issues with their liver biopsy.  24th July 2010 (Saturday)I was OK for a few days but on the afternoon of 24th July, I started to feel pain in my right shoulder. I normally put up with pain (via regular over the counter stuff) but this got worse throughout…
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Every picture tells a story (point, click, read)

Every picture tells a story (point, click, read)

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Treatment
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text.  This post will auto update as new blogs are published. thanks for reading and sharing!  Click here to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading.RonnyI’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’Sign up for my newsletters -  Click Here DisclaimerMy Diagnosis and Treatment…
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A person with Neuroendocrine Cancer fell into a hole and couldn’t get out……….

A person with Neuroendocrine Cancer fell into a hole and couldn’t get out……….

Inspiration, Patient Advocacy
A person with Neuroendocrine Cancer fell into a hole and couldn’t get out. When a work colleague walked by the person called out for help, but the work colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper. A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket. The person used the tools to dig the hole deeper still and filled the bucket. A healthcare professional walked by. The person called, “Help! I can’t get out!” so the healthcare professional gave the person some drugs and said, "Take this it will…
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A painting from America

A painting from America

Inspiration
Which one is the painting? (See separate originals below) I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail.  Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. This time it was a parcel from USA but unlike the story "Letter from America" (see below), I was expecting this one.  One of the NET community had selected one of my walk pictures and decided to paint it.  She is a real artist, and you can tell that from the picture above. When you look at them side by side, they could…
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The 6 E’s

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, Survivorship
When I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after I was aware of the risks …….. nothing happened! Before I was treated, stressful meetings (‘Emotions’) at work would make me flush though! As for ‘Eating’ – well that’s another couple of blog’s worth! Worth noting that many people…
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I have walked 500 miles and I will walk 500 more (….. sing along)

I have walked 500 miles and I will walk 500 more (….. sing along)

Inspiration, Living with Neuroendocrine Cancer, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email https://youtu.be/VKyWLAaStwM?t=53 At the beginning of the year, I signed up to walk 1000 miles in 2021.  I can now confirm, I'm halfway there in 5 months.  I have buffer time ..... but only if I keep going.  By total coincidence it came on the anniversary of the completion of an 84 mile walk along Hadrian's Wall on 31st May 2014.  500 miles seems a lot more than that epic journey, but Chris and I did do around 300 miles in training to build up our stamina. Am I mad walking 1000 miles as a Stage 4 cancer patient? Not quite but working on it (haha).  I have several incentives, including:…
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Clinical Trial: Survivin Long Peptide Vaccine in Treating Patients With Metastatic Neuroendocrine Tumors

Clinical Trial: Survivin Long Peptide Vaccine in Treating Patients With Metastatic Neuroendocrine Tumors

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email What are cancer vaccines? I remember seeing a comment by a NET Specialist on twitter saying, "We need vaccines".  This was in response to a tweet from another NET Specialist reporting dismal data from an immunotherapy drug for Neuroendocrine Carcinomas. In 2020/2021, the word vaccine has been used a lot, but this specialist was not inferring anti-viral treatment, he was talking about "cancer vaccines", an emerging discipline in science where vaccines act as an immunostimulant to treat cancer.  This prompted me to look around and found this trial which may be of interest to you.  However, before anyone gets too excited, this is very early days in the study of…
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Neuroendocrine Tumour (VMT-𝛼-NET) programs

Neuroendocrine Tumour (VMT-𝛼-NET) programs

Clinical Trials
UPDATE 10 SEP 2021.Viewpoint Molecular Targeting(TM) Receives FDA Clearance of Investigational New Drug Application for Phase 1 Imaging Study for VMT-a-NET for Neuroendocrine Tumors3 years ago, I wrote about an emerging type of peptide receptor radionuclide therapy (PRRT) suggesting it could be next generation.  That work continues.  It was being labelled with the term "Targeted Alpha-emitter Therapy (TAT)" using "alpha particles".  The current approved types of PRRT use beta particles so is a totally different method.  You might be thinking what the differences are and how does it affect me?  You can read more in my article PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT).I also wrote about the term THERANOSTICS, a combo term for THERAPY and DIAGNOSTICS.  In the same way that you have a theranostic pair in…
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Dual Tracer (68Ga-DOTATATE and 18F-FDG) PET Imaging in G2 & G3 Gastroenteropancreatic Neuroendocrine Tumours

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

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email For some time now, I've been watching the development of PET scans for Neuroendocrine Neoplasms (NENs).  I use the term 'Neoplasms' because there are different strategies for well and poorly differentiated types, Neuroendocrine Tumour (NET) and Neuroendocrine Carcinoma (NEC) respectively.It's known that most NETs have somatostatin receptors which makes tumours be seen better on somatostatin receptor-based imaging e.g. 68Ga-DOTATATE or 64Cu DOTATATE, but more aggressive types tend not to have working somatostatin receptors and are better seen on regular PET, i.e. 18F-FDG PET/CT.   However, nothing in NENs is simple and there's always outliers.  This has been highlighted since the addition of a Grade 3 Well Differentiated NET into the equation.The…
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Generic Somatostatin Analogues for Neuroendocrine Cancer

Generic Somatostatin Analogues for Neuroendocrine Cancer

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I've covered a lot about somatostatin analogues, particularly the two predominant approved drugs Lanreotide and Octreotide.  Recently I read about generic drugs and found there are some for octreotide and as at Jul 2021, at least one for Lanreotide.  I was concerned to hear a patient asking a question about generic drugs in my private Facebook group with the main concern being they could be of lesser quality.  I studied that in more detail and here are the results of my research.  What are generic drugs? According to the US FDA, a generic drug is a medication created to be the same as an already marketed brand-name drug in dosage…
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A Diagnostic Imaging Study of 64Cu-SARTATE™ for Neuroendocrine Tumours

A Diagnostic Imaging Study of 64Cu-SARTATE™ for Neuroendocrine Tumours

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email We probably should start to use the term "Somatostatin Receptor PET" (SSTR PET) a bit more.  We got used to using the term Ga68 PET but since then we have an approved copper version known as 64Cu Dotatate (commercial brand name in US DETECTNET™).  Now we have another in the clinical trial pipeline and will add others as they come onto my radar.Ga68 Dotatate/TOC/NOC - click hereCu64 Dotatate (DetectNET) - click hereA Diagnostic Imaging Study of 64Cu-SARTATE™ Using Positron Emission Tomography (PET) on Patients With Known or Suspected NETsReference: NCT04438304Trial status: RecruitingThe purpose of this study is to assess the performance of imaging agent 64Cu-SARTATE in participants with known or suspected Gastroenteropancreatic…
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A Neuroendocrine Cancer diagnosis:  I didn’t even feel ill

A Neuroendocrine Cancer diagnosis: I didn’t even feel ill

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told.I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy.  I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'.  I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp speed'.So, why was I admitted to hospital during the diagnostic phase?…
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Treatment for Neuroendocrine Cancer – a summary for patients

Treatment for Neuroendocrine Cancer – a summary for patients

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Scope This summary provides an overview of the types of therapy known for treating Neuroendocrine Cancer. They will have been approved at least by one national or regional approval agency, may not be available or approved in your own country; and may appear in clinical guidelines for the treatment of Neuroendocrine Cancer. Clinical trials will not be covered, although it's noted that some of the approved treatments listed may be in follow on trials either to prove new coverage or used in combination with another drug. For a list of clinical trials covered by the author, click here. This summary will not include complementary or alternative treatment. Who recommends the…
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Ronny Allan Newsletter – 1st March 2021

Ronny Allan Newsletter – 1st March 2021

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OverviewMany thanks for the support in February both on public pages and in my group - in fact the group's statistics are totally booming - that is helping a lot of people.  My public sites still need some work and I'm hoping you can help with that.  Of course, it's not helped by my finger injury which is holding me back. Read more about that problem below.Monthly update followsThe newsletter is now divided into several sections:1. External news of interest.  A shortlist of things I noticed on my social media travels.2. A bit of inspiration.  If you read nothing else, read this bit!3. External projects - what I've been up…
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Opinion: On Rare Disease Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Opinion: On Rare Disease Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email On Rare Disease Day, what's wrong with a bit of Neuroendocrine Cancer awareness?  Well, there are three main things wrong with Neuroendocrine Cancer awareness: 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…
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My treatment is a pain in the butt!

My treatment is a pain in the butt!

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The post header is a bit ‘tongue in cheek’ (…. did you see what I did there?)  I’m very happy to have this treatment every 4 weeks – I can think of far worse scenarios. When I was first diagnosed, the dreaded word ‘Chemo‘ was discussed.  Chemo isn’t particularly effective in treating the lower grades of Neuroendocrine Cancer but it is used extensively at high grade and often in Grade 2 showing more effectiveness in pancreatic NETs.  Looking back though, my Oncologist may have meant in conjunction with a liver embolization (i.e. TACE) on the basis this was scheduled once in June 2011 following liver surgery. Prior to my diagnosis,…
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Ronny Allan – Top 10 for 2020 – Neuroendocrine Cancer

Ronny Allan – Top 10 for 2020 – Neuroendocrine Cancer

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 2020 was a different year due to the pandemic and it has spilled over into 2021 - this has had the effect of being slightly down on the 2019 figures.  I also changed tack on one of my pages adding a 'coping' theme rather than writing new blog posts.  This also had the effect of reducing blog hits for the year but very happy under the circumstances. Much of the effort in 2020 was directed in building up my private group, the fastest growing and biggest NET group on earth Of the approximately 336,000 views of my blog site in 2020, the top 10 articles account for almost 70,000.  They…
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Neuroendocrine Cancer: Follow up tests and checks

Neuroendocrine Cancer: Follow up tests and checks

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, even age.I have metastatic small intestine NET.  In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that was mainly due to seeing so many different doctors for so…
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Neuroendocrine Cancer – I didn’t hear it coming

Neuroendocrine Cancer – I didn’t hear it coming

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned.  However, some cancers are in the 'difficult to diagnose' category. Certain types of Neuroendocrine Tumours (NETs) are in this difficult to diagnose category due to the vague symptoms which may be mistaken for other diseases and routine illnesses.  However, in many cases which don't seem to make the statistics, it can be incredibly quiet leading to incidental diagnosis including at an advanced stage. It's SNEAKY! Every year the advocacy organisations push out skewed statistics, but few take a wide enough view to get the full spectrum of patient experience.  I accept…
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Opinion: On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Opinion: On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email On World Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness?  Well, there are three main things wrong with Neuroendocrine Cancer awareness:1.  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. It does not do us any favours in awareness terms, nor does it do us any favours in clinical terms.  If clinicians, scientific organsiations (including pharma) and patient advocate organisations will not move on, we as patients and advocates need to pull them along with us.   We need…
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Ronny Allan Newsletter – 1st February 2021

Ronny Allan Newsletter – 1st February 2021

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Overview [caption id="attachment_21789" align="aligncenter" width="640"] Honestly, there is a smile under that mask![/caption] 2021 is now underway and January has been an interesting month.  The highs are the approval of more vaccines and I had the first of my own vaccinations on 31st January - click here to see the announcement on my Facebook page. The lows are slightly depressing growth figures on my biggest Facebook public page and less than normal blog figures for the month of January. I'll need to work on that in February and with your help, I can catch up.  I'm putting it down to COVID-19 malaise! January update follows The newsletter is now divided…
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Lanreotide and Keytruda – the PLANET study (NCT03043664)

Lanreotide and Keytruda – the PLANET study (NCT03043664)

Clinical Trials, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Headline:  Roughly 40% of patients with advanced, progressive gastroenteropancreatic neuroendocrine tumors (GEP-NETs) treated with pembrolizumab (Keytruda) in combination with lanreotide (Somulatine Depot) achieved stable disease, according to results from the phase 1b/2 PLANET clinical trial presented during the 2021 American Society of Clinical Oncology (ASCO) Gastrointestinal Cancer Symposium.I've written about Pembrolizumab (Keytruda) before in my general immunotherapy coverage - click here.  I did note they weren't really having much luck with Neuroendocrine Neoplasms although I do see some success (.... but not enough) in poorly differentiated carcinomas.  Well differentiated NETs remain an immunological desert.  However, this poster abstract from ASCO GI conference caught my eye.“Pembrolizumab has antitumor activity in a…
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Currently trending on RonnyAllan.NET

Currently trending on RonnyAllan.NET

Patient Advocacy
I realise some of you are busy but if you wanted a quick catch up and summary of what's currently relevant on my site, you can bookmark this article and refer to it time and time again.  It will automatically update the top 10 list below which are the most read posts in the previous 48 hours on my site.  These views will have come from various sources of reading including my Facebook pages, Twitter, Pinterest, Wordpress, newsletters and in my private group.  I hope many of you will find this new tool useful.Thanks as usual for your phenomenal support. Ronny Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email My Facebook page is click here Click here to join my…
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The Invisibility of Rectal NETs – do the math

The Invisibility of Rectal NETs – do the math

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Do the math not the myth An addition to my mountain of evidence against the so called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data.  For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are recommended screening. Colorectal covers the large intestine including the sigmoid…
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Ronny Allan Newsletter – 1st January 2021

Ronny Allan Newsletter – 1st January 2021

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Happy new year everyone! OverviewJust when things couldn't get weirder, they get weirder.  At the beginning of the year, I started as I meant to go on, more advocacy work, more support for patients, grow my pages, grow my website, grow my private group.  I achieved most of it (and then some).  In February/March, it became obvious things were happening that would have serious consequences.  Nonetheless, I think most people thought it would all be over in a few months. We got that wrong......Where I live, December just got worse, we are in a very serious second wave of the virus and it could even turn out to be more…
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A 2020 blog review (RonnyAllan.NET)

A 2020 blog review (RonnyAllan.NET)

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Click picture to view the A to Z of Neuroendocrine Cancer by Ronny Allan I should be happy with just over a third of a million views in 2020 but I'm not!   I had a target to beat 370,500 from 2019 but fell short by 35,000 (an average month).  However, you can see from the chart below, I was on track in Jan/Feb but knocked sideways by the COVID pandemic in March to August. I never got back above 30k in one month (my average) until November. December is traditionally quieter.  Hopefully 2021 will be a better year.  Facebook is a prime outlet for my blog views (by a country…
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Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Clinical Trials, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email It's estimated that around 5-10% of Neuroendocrine Neoplasms (NENs) have an unknown primary - what that means is cancer cells have been found in the body but the place the cancer began remains unknown.  I wrote about this issue in more depth in my article "Needle in a haystack" - you can read that here.  In that article you will note that NET specialists through their knowledge and understanding of the behaviour of these comped tumours, can often drill down and gather various pieces of evidence to help narrow down the primary location. However, this new study would indicate they could have access to a new tool to be able…
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Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus

Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus

Clinical Trials
When I see a trial for Gastroenteropancreatic NETs (GEPNETs), I know that BP (Bronchopulmonary) NETs (includes Lung) are not included.  When you look at the approval wording for the major treatments in use (PRRT Lutathera, Lanreotide), they appear to use the term GEPNETs making BP NETs the poor relative.  Clearly there's highly complex reasons why NETs react differently in different parts of the body.  I can see that BP NET patients were involved in clinical trials for both of the mainstream treatments listed above.  The drug approval process is also highly complex, and I can see from the wording that functional BP NETs with carcinoid syndrome can qualify at least for somatostatin analogues (Lanreotide and Octreotide).  That is not to say BP NET patients cannot get access to these treatments,…
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I will take the vaccine, no question

I will take the vaccine, no question

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Photo by Nataliya Vaitkevich from Pexels NEW as at 1st Feb 2021 - NANETS’ Position Statement COVID-19 Vaccination for NEN patientsOpinion post.  Please note this post is about the author and should not be considered a recommendation for you to get the COVID-19 vaccine. It's based on my own research, my own condition and my own decision derived from my own analysis of any perceived risks to my own situation. I'm confident the independent UK Medicines and Healthcare products Regulatory Agency (MHRA) has met strict standards of safety, quality and effectiveness, the UK is known for its thoroughness (as are many other countries).  In UK, any coronavirus vaccine that is approved must…
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Neuroendocrine Tumours – now you see them, now you don’t!

Neuroendocrine Tumours – now you see them, now you don’t!

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email In my post entitled "If you can see it, you can detect it", I listed the different types of scanning techniques and technology to find evidence of disease in Neuroendocrine Tumours (NETs).  Of course, while scans, blood and (current) marker tests can give some pretty big and important clues, "tissue is the issue" to determine type.Even after formal diagnosis, seeing all the tumours can be a challenge with NETs.  In the article I quoted above, I indicated that scans for NETs can be analogous to picking 'horses for courses'. For example most NETs have somatostatin receptors and can often be seen better on functional scans e.g. somatostatin receptor scintigraphy (SRS)…
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Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

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

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

Lanreotide: Ten more years please!

Inspiration, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Back in February 2015, I wrote an article called "Four more years" and the title came from an election campaign happening at the time when I had been on Lanreotide for approximately four years.  Inspired by this campaign slogan, I too wanted four more years and crafted the blog post.However, I was underselling myself as I've now hit 10 years of Lanreotide on 9th December 2020.  On that day in 2010, I was still recovering from major surgery and hadn't had any somatostatin analogues since leaving hospital on 26th Nov.  Prior to surgery, I had been taking daily shots of Octreotide which did have the effect of reducing the symptoms…
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Thanks a MILLION …and then some!

Thanks a MILLION …and then some!

Awareness, Patient Advocacy
thanks all! I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and in December 2020, a Christmas present of one and a half million!  When I first set it up in Apr 2014, it was just to help spread awareness whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would reach 1.5 million hits and accumulating around 17,000 followers across all my social media sites.I'm now heading for 2 million (estimated by 1 Jan 2023) and I often think I might have a screw loose by even thinking about doing that! However, the hits keep coming in - THANK YOU!My key aims are international level…
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Ronny Allan Newsletter 1st December 2020

Ronny Allan Newsletter 1st December 2020

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This newsletter covers a busy November with a look ahead for December and beyond.  October 2020 was manic, but November was just as manic but in a different way.  It was also a better month in terms of growth (increased viewing statistics etc).In UK. most of November had been under new COVID restrictions but due to the weather this time of year, I was not able to exploit that as much as the first lockdown in April/May.  Despite that, I'm built for lockdowns due to a 'regimented' upbringing in the military, so was able to stay busy and relaxed when needed. Still managed to get a few walks and cycles now…
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If it’s not raining, it’s not training! (part 2)

If it’s not raining, it’s not training! (part 2)

Inspiration, Survivorship
As someone who was born and raised in the Scotland, and lived most of my life in the UK, I'm no stranger to inclement weather.  In my 29 years years in the military, the weather was no excuse to do nothing, whether it was training or the real thing. They gave us wet weather clothing after all!  There is a saying in the UK army and it goes like this "If it's not raining, it's not training".  In classic British pragmatism, it decodes to "raining is normal so get on with it".  In fact, one of my oldest army friends cannot wait for the torrential rain, he much prefers it to the sun!  Read his blog here.  We've been caught out over the years, for example back in 2016, a…
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Ronny Allan Newsletter 1st November 2020

Ronny Allan Newsletter 1st November 2020

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This newsletter covers a busy October with a look ahead for Nov/Dec.  September 2020 was manic but October, although slightly less busy, has been a mix of activity, much of it devoted to personal pursuits.  The end of October in UK has arrived and an announcement of another nationwide COVID lockdown. his will keep me low profile in November but as I've said before, I'm built for lockdowns as long as I can get a walk or cycle in the woods now and then!The newsletter is divided into a number of sections:1. External news of interest.  A shortlist of things I picked up on my social media travels.2. A bit of…
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Piss off cancer – I’m 65 (…. and a half)

Piss off cancer – I’m 65 (…. and a half)

Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I was 54 years and 9 months old at diagnosis.  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…
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