Histotripsy:  A new technique which destroys cancer using soundwaves (now in Clinical Trials)

Histotripsy: A new technique which destroys cancer using soundwaves (now in Clinical Trials)

Clinical Trials, Treatment
Illustration of histotripsy technology. Image courtesy of Medicine at Michigan Magazine. A new technique that destroys cancer using soundwaves.  It also spurs the immune system to kill off any of the tumour left, scientists have revealed. The non-invasive treatment only needs to be partially effective to stop the cancer spreading.It is currently being tested on human liver cancers in the US and Europe following successful trials in rats. The team from the University of Michigan showed the non-invasive sound technology is able to prevent further spread with no evidence of recurrence or metastases in the majority of cases. The treatment, called histotripsy, noninvasively focuses ultrasound waves to mechanically destroy target tissue with millimetre precision. In many cases, the entirety of a cancerous tumour cannot be targeted directly in treatments due to…
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We are still here!

We are still here!

Inspiration
I'm always amazed at the responses to my post "I'm still here" and it has become a bit of a catchphrase I use, even in response to a question in my private group.What I see is that many of us are still here and I wanted to dedicate this post to those who frequently join in with my "I'm still here" posts.I'm glad you're still here too.  Share or comment if you agree!We are still hereCheck out the fantastic response to my 5th year 'cancerversary' post.  Click here to be inspired. Missed out 6th!!!Check out the fantastic response to my 7th year ‘cancerversary’ post. Click here to be inspired.Check out the fantastic response to my 8th year ‘cancerversary post’. Click here to be inspired.Check out the fantastic response to my 9th year ‘cancerversary post’. Click here to…
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My invisible illness is not invisible to me

My invisible illness is not invisible to me

Awareness, Living with Neuroendocrine Cancer, Survivorship
The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer.  Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years before making a vague announcementI had no idea the cancer was growing in me for years. Perhaps some of my routine illnesses weren't as routine as I thought.  Sorry too late, I'm metastatic,…
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Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Clinical Trials, Patient Advocacy, Treatment
Breaking News It doesn't seem that long since we got the new improved injection delivery system for the current model of Lanreotide.  I had to look at my blog articles for the announcement of that and was surprised it had already been 3 years.  It may be a shorter time period for many though, UK was near the front of that rollout.  I personally found the new injection a better experience and I know the nurses were happier too.  However, I also know there was some disappointment that the injection gauge and length were the same and therefore there was little change for many in terms of the 'experience'.  Speaking from a personal perspective, there was not sufficient change for me to consider moving to self-inject. I know (at least…
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Clinical Trial: Mycapssa® (octreotide capsules) for Neuroendocrine Tumours

Clinical Trial: Mycapssa® (octreotide capsules) for Neuroendocrine Tumours

Clinical Trials, Treatment
The delayed-release capsules contain 20mg of octreotide. The mainstay somatostatin analogues for Neuroendocrine Tumour patients are Lanreotide and Octreotide and I have blogged or mentioned them frequently, and they are probably two of the most written words in my private patient group ....... coupled with "injection" or "shot".  For years, people have talked about the need for different delivery systems including capsules and even nasal sprays.  Many patients have indicated a preference for an easier route into the system with similar efficacy.  I have been following a few of these initiatives in an article called "Somatostatin Analogues and delivery methods in the pipeline".  While generic somatostatin analogues have helped people and organisations with cost, these generics are still using injection delivery systems. Two diseases in particular have been benefitting for some…
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Clinical Trial: Testing the Use of Chemotherapy After Surgery for High-Risk Pancreatic Neuroendocrine Tumors

Clinical Trial: Testing the Use of Chemotherapy After Surgery for High-Risk Pancreatic Neuroendocrine Tumors

Clinical Trials, Treatment
An interesting trial centred on SW USA.   The use of CAPTEM following surgery in high-risk pancreatic NETs (G2/G3 well-differentiated).  Also includes the use of NETest at 3 time points, which is very interesting considering the recent withdrawal of Chromogranin A from US NET Guidelines.  (Read about NETest here). Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide versus Observation in High-Risk Pancreatic Neuroendocrine Tumors (S2104) is a recently activated National Clinical Trials Network randomized phase II trial designed to compare CAPTEM chemotherapy versus observation following resection of pNETs (see Figure 2). Patients with well-differentiated grade 2 or 3 (Ki-67 up to 55%) pNETS with a Zaidi score of ≥3 who underwent resection (or ablation) for either localized disease with or without up to five liver metastases are eligible for…
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A Spotlight on Lung Neuroendocrine Neoplasms

A Spotlight on Lung Neuroendocrine Neoplasms

Awareness
WHO Classification of Tumours, 5th Edition, Volume 5: Thoracic TumoursThe aim of this spotlight is to provide a summary of the latest information on Lung Neuroendocrine Neoplasms (NEN) including the latest terminology, epidemiology data, and guidelines.   This follows the publication of the Thoracic WHO classification 5th edition (2021): terminology and criteria for neuroendocrine neoplasms (Blue Book).  This book has been anticipated to see if the panel compiling this follows the lead of the Gastroenteropancreatic Neuroendocrine Neoplasms (GEPNEN) editions issued in 2017 (Endocrine) and 2019 (Digestive systems) by removing the antiquated misnomer term ''Carcinoid" in line with the recommendations made by senior NEN doctors in 2020 to have commonality across all blue books. Neuroendocrine neoplasm update: toward universal nomenclature © 2020 Society for Endocrinology 2020, Guido Rindi and Frediano Inzani.I can tell…
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The trouble with the NET (Part 5) – Cancer Food Myths

The trouble with the NET (Part 5) – Cancer Food Myths

Diet and Nutrition, 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 can lead to needless worry and even hinder good prevention and treatment decisions.  Even food and nutritional supplements fall into this area. Common dietary mythsThere are numerous (alleged) ‘anti-cancer’ diets and foods in the media and on the internet but some of the most common ones are highlighted in the section below. This summary cannot cover all dietary myths that you may encounter but it could be helpful to try empowering fellow patients to question the credibility of the diet claims they are coming across. The tips below…
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External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

Patient Advocacy, Treatment
Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of candidates and predictions on who will benefit most are still not an exact science (....and possibly never will be).  Neuroendocrine Neoplasms are a heterogenous grouping of cancers, and heterogeneity also includes (but is not limited to) age, stage, gender, functional/non-functional, and pre-existing condition constraints. All of this complicates the task of therapeutic decision-making and sequencing. The attached cohort study aims to bound the issue and describe a method of allocating a Clinical Score (CS) to assist doctors and patients in their decision-making. According to the lead author, the CS is the initial prognostic score to help NET patients anticipate expected benefit from PRRT and is…
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Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trials, Patient Advocacy, Treatment
Whenever I post about a new trial or study, some people get excited without understanding that these new treatments and capabilities can very often take years to come to fruition and it's also possible that clinical trials can be halted, or that national approval agencies will not approve the final product.  Please bear that in mind when reading studies/clinical trials posted on RonnyAllan.NET What is the aim of this clinical trial? The aim of this single location trial in Imperial College London is to determine whether pre-treatment with ASTX727 results in re-expression of SSTR2 in patients with metastatic NETs, using 68Ga-DOTA-TATE to image epigenetic modification of the SSTR2 locus allowing subsequent treatment with Lutathera(i.e. PRRT).  Patients entered into the study will receive ASTX727 orally up to 3 to 8 days…
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Blog review and top 10 for 2021:  RonnyAllan.NET

Blog review and top 10 for 2021: RonnyAllan.NET

Awareness, Clinical Trials, Diet and Nutrition, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
I should be happy with over a quarter of a million views in 2021 but I'm not!  Like 2020, my figures are down on previous years as the pandemic seems to have changed viewing habits, not to mention my own bandwidth during this period. I created my private Facebook group not that long before the pandemic started, and I think that has been playing a part as huge chunks of my time has been taken up on that special project.  I also changed the nature and the type of posts on my "Ronny Allan" Facebook page, which led to fewer outlets for my blog posts.  Hopefully, 2022 will be a better year. However, just as I was totally astonished to have been able to accumulate a million views of my…
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Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Diet and Nutrition, Patient Advocacy, Treatment
With Neuroendocrine Cancer patients, the mention of "diarrhea" is a topical subject.  There's the usual claim that it's caused by carcinoid syndrome and for some that will be true, particularly people who have tumours associated with that syndrome, that is, those who have mostly a midgut primary; and that is, those who mostly have elevated levels of serotonin (via 5HIAA testing).  When you look at epidemiology data, it becomes clear the numbers associated with carcinoid syndrome are much lower than what might be perceived when analysing many comments in any patient group - most epidemiological data suggests around 10% of the total number of NET cases. There are a number of reasons for this confusion including the belief that any type of Neuroendocrine Cancer can get carcinoid syndrome when in fact…
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177Lu-DOTA-LM3 – a novel radionuclide therapy proven safe and effective to treat neuroendocrine neoplasms (NEN)

177Lu-DOTA-LM3 – a novel radionuclide therapy proven safe and effective to treat neuroendocrine neoplasms (NEN)

Clinical Trials, Treatment
This is all the information available and further details to follow if any is published.  Remember, this is not yet an approved treatment, nor is it widely available.  Only ever used in experimental/compassionate situations. Not even entered the formal clinical trial system. So even if there was a plan to develop and deploy it (which as far as we know there isn't), and it gained approval, it would be some years before we see it.  Whenever I post about a new trial, some people get excited without understanding that these new treatments and capabilities can very often take years to come to fruition and it's also possible that clinical trials can be halted, or that national approval agencies will not approve the final product.  Please bear that in mind when…
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Small Intestine Neuroendocrine Tumours:  “No other cancer really looks like this”

Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”

Patient Advocacy, Treatment
It's known that Neuroendocrine Cancer is quite different in many ways from other cancers, notwithstanding the misnomer term carcinoid which is thankfully being slowly moved out of terminology.  As a few examples:It's a wide spectrum heterogeneous cancer group with indolent isolated small tumours at one end all the way across to extremely aggressive metastatic cases at the other end.It's a cancer type that can be syndromically functional or non-functional to add to diagnostic and management challenges.It's a cancer that can appear almost anywhere in the human body.One of it's less well-known traits is the ability to produce multiple primary tumours.  Most people might be thinking of Multiple Endocrine Neoplasia at this point (a syndrome that predisposes the patient to multiple primary tumours in different organs).  However, I also mean multi-focal…
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20th November 2010 – feeling perkier

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment
Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications.  At that point, I had been keeping my diagnosis within close family and friends and my manager at work.  People at work and my wider list of friends were probably wondering what was going on with me.  Cleary, I let my emotions slip by posting this on Facebook on 20th November 2010. Perhaps this was my way of opening up.  That was 11 days after the surgery, so I guess it took a while to feel almost normal. I had a big surgery! I had some issues along the way. But after 10 days I had got through…
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Do we need a new model for Carcinoid Crisis in NETs?

Do we need a new model for Carcinoid Crisis in NETs?

Treatment
(so called) Carcinoid Crisis is one thing that tends to raise concerns in patients and has been bubbling away in NET centres and in patient communities for many years.  One of the big problems I have found is trying to place boundaries on it in terms of which types of NET does it apply to.  My thinking was that surely it only applies to those tumours which were once described by that ancient misnomer "carcinoid" and yet you hear patients who clearly do not have a tumour that was once described as "carcinoid" talk about it, at least in terms of protection against it. Perhaps some of the confusion lies with the ancient misnomer term, another reason why we need to get rid of it.  Many texts I read describe it…
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A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO)

A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO)

Clinical Trials, Treatment
Some of the key differences between Lanreotide and Octreotide long-acting are:1.  Octreotide long-acting needs constituting prior to administration - Lanreotide comes prefilled. 2. Octreotide long-acting is administered intra-muscular, Lanreotide is deep subcutaneous. 3.  I probably should add Octreotide LAR cannot be self-injected but Lanreotide can.  I suspect this type of delivery system may open up that possibility for Octreotide LAR. So, this clinical trial caught my eye.  A version of octreotide long-acting which is prefilled and given subcutaneously.  Plus, the manufacturers say it has a much higher bioavailability than the standard product Sandostatin LAR (bioavailability is the proportion of a drug or other substance which enters the circulation when introduced into the body and so is able to have an active effect).CAM2029 might therefore be considered a generic of Sandostatin LAR but better…
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CAR-T clinical trials for Neuroendocrine Cancer

CAR-T clinical trials for Neuroendocrine Cancer

Clinical Trials, Treatment
What is CAR-T?CAR-T – chimeric antigen receptor T-cell – therapy is specifically developed for each individual patient and involves reprogramming the patient’s own immune system cells which are then used to target their cancer., i.e. it's an immunotherapy. It is a highly complex and potentially risky treatment, but it has been shown in trials to cure some patients, even those with quite advanced cancers and where other available treatments have failed.The treatment involves several steps over a number of weeks. First the patient’s blood is taken and is sent off to the manufacturer’s laboratory. Here the patient’s blood is ‘trained’ to fight the cancer cells. The CAR-T blood is then transported back to the hospital and the patient is administered with the CAR-T to treat their condition.It has not been deployed in…
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Opinion: On World Neuroendocrine Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

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

Awareness
On World Neuroendocrine 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 2022. Things have moved on so much but the use of this ancient terminology and what it infers, just keeps us marking time in the last century. It does not do us any favours in awareness terms, nor does it do us any favours in clinical terms.  If clinicians, scientific 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 to do all we can to remove the term "Carcinoid" from our vocabulary ...... and theirs.  Read more on…
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In the land of small tumours, there is still a lot of work to do!

In the land of small tumours, there is still a lot of work to do!

Awareness, Clinical Trials, Patient Advocacy, Treatment
I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1).  He always delivers with "enthusiastic vigour", a term he reduces to "brio" which I then googled!His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors".  He quotes from a 1987 article written by Dr Charles Moertel entitled "An Odyssey in the Land of Small Tumors" and I suspect he selected this article from Dr Moertel as he too writes with "brio"."Patients…
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The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, Survivorship
I see a lot of emotional and anxiety issues in my private group.  I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population.  Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it.  I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients.  February 2020 - boom!  Add in a global pandemic and all that follows and it's throwing fuel on those fires. The COVID-19 pandemic has added another layer of complexity to the fears of NET patients. Inability to travel,…
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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, Living with Neuroendocrine Cancer, Patient Advocacy
Opinion PostI've lost count of the number of diet related 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".  The answer is almost impossible.  Here are a few of the reasons why these things get muddled: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 about a very 'heterogeneous' group of patient diagnoses and experiences. Consequently, the responses are usually multiple and widely different. The person who asked is often left confused with bewildering opinions and options. 2. The heterogeneity of Neuroendocrine Neoplasms extends to dietary issues too.  No single diet suits everyone with…
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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
ITM Isotope Technologies Munich SE (ITM), today announced that the first patient has been treated in its second pivotal phase III clinical trial, COMPOSE (NCT04919226), evaluating the company’s lead radiopharmaceutical candidate, ITM-11 (n.c.a. 177Lu-edotreotide), for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). ITM-11 is a Targeted Radionuclide Therapeutic consisting of the high-quality radioisotope no-carrier-added lutetium-177 (n.c.a. 177Lu) fused with a somatostatin analogue to specifically target somatostatin receptor-positive (SSTR+) GEP-NETs. While COMPOSE is evaluating ITM-11 for the treatment of well-differentiated high grade 2 and grade 3 GEP-NETs, the radiopharmaceutical is also being investigated in ITM’s ongoing pivotal phase III trial, COMPETE (NCT03049189), in patients with grade 1 and 2 GEP-NETs. GEP-NETs can occur in the pancreas or in other parts of the gastrointestinal tract. Due to their frequent asymptomatic and progressive nature, GEP‑NETs…
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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.Neuroendocrine Tumor Pathogenesis…
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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
Updated and reviewed 21st Feb 2022OPINION.FOR UK NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients.  One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned.  This is based entirely on my own experience and decisions.  I also declare no interest in any of the companies listed, i.e. I am not receiving any free or reduced cover or any financial incentive for mentioning a particular company.  I do this to try to help others. Background.  Ronny Allan was diagnosed with Stage IV Neuroendocrine Cancer in 2010. Following several…
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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…
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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 7000+, 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
Caption: Talking to Ipsen 2016 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.  I will keep adding them so they're all in one place.  Published talks CNETS Canada - 16th January 2022 I was invited by their President Jackie Herman to talk to patients and caregivers via a CNETS Canada-sponsored webinar.  The topic was "patient perspective and journey". Have a listen by clicking on the picture below (or here).  Click on the picture to play Ipsen Pharma - 2016…
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11 years – I’m still here!

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship
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 of the mesentery and in the…
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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! Scroll, point, click, read, share! Click here and answer all questions 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. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…
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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. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper.A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper still 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…
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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
An opinion post 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 (so called) 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!…
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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
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: As a stage 4 cancer patient, I want to be as fit as possible to withstand any rigours I may…
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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…
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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
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 variable clinical outcome of patients with G2 & G3 well diff Gastroenteropancreatic Neuroendocrine Tumours (GEP NETs) makes the selection of…
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Generic Somatostatin Analogues for Neuroendocrine Cancer

Generic Somatostatin Analogues for Neuroendocrine Cancer

Treatment
Updated 18th December 2021 News just in..... the first generic version of Somatuline Depot (Lanreotide) in the US has been approved for marketing by the US FDA according to a press release from the company Cipla. This can often lead to price reductions, but I have no details other than what I published in my generic somatostatin analogues blog post attached. The active ingredient, route of administration and strengths are the same as SOMATULINE DEPOT®, from Ipsen Biopharmaceuticals Inc.  See the Lanreotide section below. 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…
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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
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? Because I was stupid.  In fact I was double-stupid. Firstly, despite having had to undergo a liver biopsy…
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Treatment for Neuroendocrine Cancer – a summary for patients

Treatment for Neuroendocrine Cancer – a summary for patients

Treatment
ScopeThis summary provides an overview of the types of therapy known for treating Neuroendocrine Cancer. They will have been approved at least by one national or regional approval agency, may not be available or approved in your own country; and may appear in clinical guidelines for the treatment of Neuroendocrine Cancer.Clinical trials will not be covered, although it's noted that some of the approved treatments listed may be in follow on trials either to prove new coverage or used in combination with another drug.  For a list of clinical trials covered by the author, click here. This summary will not include complementary or alternative treatment but may cover or overlap with experimental treatment.          Who recommends the best treatment for my condition? Different types of doctors often work together to create a…
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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
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 but the use of this ancient terminology and what it infers just keeps us marking time in the last century. It does…
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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
Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, and even age.I have metastatic small intestine NET.  In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that was mainly due to seeing so many different doctors for so many different issues. In reality, I was seeing and being assessed by my Oncologist around 3-month intervals, eventually moving…
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