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, Patient Advocacy
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
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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   My Facebook page is click here Click…
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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, Patient Advocacy
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)

Patient Advocacy
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
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…
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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

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 another half!

Thanks a MILLION …and another half!

Awareness, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 now 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 and I often think I might have a screw loose by even thinking about…
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Ronny Allan Newsletter 1st December 2020

Ronny Allan Newsletter 1st December 2020

Newsletters, Patient Advocacy
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

Piss off cancer – I’m 65

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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Early diagnosis of late stage cancer!

Early diagnosis of late stage cancer!

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION: What a strange title for a cancer blog post!   However, what a strange cancer I have.  Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor.  To cut a long story short, you can read about me here."The cancer has been growing for years"One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in most cases. I'm fairly certain my surgeon once said something similar.  Clearly doctors are 'guesstimating' so these…
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Serotonin – it’s a no-brainer!

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION There is constant discussion about the effects of serotonin-producing tumours and issues of depression, anxiety and 'rage'. However, it's a really complex issue for lay people and I have no intention of trying to resolve it in this article. However, it's clear to me from listening and reading these discussions in patient forums for many years, that most of the discussion appears to be based around years of unsubstantiated and unmoderated debate inside patient forums without professional input.  This is not an attempt to bash patient leaders and forum administrators, because full understanding of these issues needs a much wider moderation. I've spent a considerable time researching and analysing…
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Paul Hunter – Snooker champion and Neuroendocrine Cancer patient.  Died 9th October 2006

Paul Hunter – Snooker champion and Neuroendocrine Cancer patient. Died 9th October 2006

Inspiration
Paul Hunter, three-time Masters snooker champion was just 27 when he fell victim to Neuroendocrine Cancer at the peak of his powers and popularity. At just 25, he'd won the third Masters title, a feat which, at the time, had been achieved by only two other players in the world. He was dubbed the "Beckham of the Baize" because of his chiselled good looks and long, blond hair (a reference to famous footballer David Beckham).This young age is unlike the majority of Neuroendocrine Cancer patients who are diagnosed in their later years. I took to the internet to find out more. Although there are many sites and articles confirming the link to "Neuroendocrine Tumours" in the annals of the internet, many sites state "stomach cancer" (some as late as 2017)…
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Ronny Allan Newsletter 1st October 2020

Ronny Allan Newsletter 1st October 2020

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email September 2020 has been another very interesting month and I'm still trying to work out how I've been able to pack it all into 30 days.   It's a month full of personal 'cancerversaries', things that have inspired me to do more and signs of normal life returning (well at least a new normal).   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 inspiration.  Something which was very popular with my following and I wanted to share with you this month. 3. External projects - what I've been up to…
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Clinical Trial:  Phase II CLARINET FORTE Somatuline Autogel (Lanreotide) increased dosing interval

Clinical Trial: Phase II CLARINET FORTE Somatuline Autogel (Lanreotide) increased dosing interval

Clinical Trials, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email CLARINET FORTE is a prospective single-arm, open-label, exploratory, international Phase II study to explore the efficacy and safety of an increased Somatuline® Autogel® (lanreotide) dosing interval (120 mg every 14 days) in patients with metastatic or locally advanced unresectable pancreatic NETs or midgut NETs, with centrally-accessed progression within the last two years while on a standard lanreotide regimen (120 mg every 28 days) for more than 24 weeks.Data announced in September 2020 at the 2020 European Society for Medical Oncology (ESMO), indicated the phase 2 results support a clinically meaningful benefit to a population of patients with high unmet medical need by potentially delaying escalation to more toxic treatments. This means…
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I don’t look sick enough, sorry not sorry. 

I don’t look sick enough, sorry not sorry. 

Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Despite earlier diagnoses via more technology and screening, many people have a perception about people with cancer, it includes many things including but not limited to, lack of hair, ill in bed and being infused regularly with chemotherapy.  Another reception is that they die.  All of that is clearly terrible but it's not the norm. Many people live with cancer, many people with cancer go to work many people go on holiday, many people with cancer do normal stuff. The crazy thing about this perception is that the cancer story is changing, more and more of us are going to come into contact with cancer, either through our own experience or…
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Clinical Trial (Phase 1 Study) of Tidutamab in Neuroendocrine Tumors (DUET-1)

Clinical Trial (Phase 1 Study) of Tidutamab in Neuroendocrine Tumors (DUET-1)

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Xencor, a clinical-stage biopharmaceutical company developing engineered monoclonal antibodies for the treatment of cancer and autoimmune diseases, today announced that initial data from its ongoing Phase 1 dose-escalation study of tidutamab (XmAb®18087), an SSTR2 x CD3 bispecific antibody, in patients with neuroendocrine tumors (NETs) will be presented during the upcoming North American Neuroendocrine Tumor Society’s 2020 Multidisciplinary NET Medical Virtual Symposium. About Tidutamab Monoclonal antibodies are laboratory-produced molecules engineered to serve as substitute antibodies that can restore, enhance or mimic the immune system's attack on cancer cells. They are designed to bind to antigens that are generally more numerous on the surface of cancer cells than healthy cells, i.e. they…
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“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email A lot had been written about Steve Jobs, some good, some bad, some inaccurate - the latter is mostly about the cancer he had.  I came across this clip published by an Apple Mac publication and it contained a video of Steve the day he returned to Apple after having a liver transplant and had recovered from the procedure.  In it he said "I'm vertical" in classic Jobs language and positive outlook.  Watch the clip here:https://youtu.be/BNv2lH225Ko The article is a good one except it falls for the usual trap - that he had Pancreatic Cancer.  I made a comment of course - you might like to too.   It's probably too…
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Flower power and serotonin

Flower power and serotonin

Inspiration, Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email A memory from 5 years ago is this sunflower which I planted with my own hands and it grew taller than me (not difficult) and even taller than my garden fence (more difficult).  Of course I have to mention my wife Chris because she does infinitely more gardening than I do, and she would have nurtured the sunflower from start to finish after I planted it.  Nonetheless, I still felt a remarkably close association to the outcome! My most liked Facebook posts in 2020 (the year of COVID) relates to flower pictures and there's a reason flowers proved to be more popular than my other posts. Flowers, particularly with vibrant colour,…
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1.4 million thanks!

1.4 million thanks!

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Just registered the 1,400,000th view of my blog site.  So grateful for the support!Last 12 posts going back to 28th June - feel free to read and share.  Each one has a share button for Facebook, Twitter, Pinterest, WhatsApp and Email (as has the entire post).You can also catch up on other points of interest and some of my lockdown activities on my Facebook pages Ronny Allan and Neuroendocrine CancerMany thanksRonny
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RonnyAllan.NET – Newsletter 1st September 2020

RonnyAllan.NET – Newsletter 1st September 2020

Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email External news of interestNot surprisingly, news about Neuroendocrine Cancer has been a bit slow but I sense that things are starting to pick up. Here's a few items I picked up during August from my google alerts, from direct contact or from twitter (the latter is a key source for me to hear about what's happening).1. The Middle East Neuroendocrine Tumor Society (MENETS) will hold their first World NEN Lives 2020 Congress this September 23-24 virtually via Zoom. This congress is designed to showcase treatment options and ways to live better with and around NENs. The speakers include some of the top NEN world specialists as well as patients and…
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Small intestine, large surgery

Small intestine, large surgery

Patient Advocacy, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email My own experienceAt my diagnostic consultation, the Oncologist told me I had Stage 4 metastatic Small Intestine NET (SI NET). He also told me that surgery would almost definitely be on the cards and would be referring me to an experienced surgeon in a different hospital for assessment. I was assured this surgeon was one of the most experienced in the south of England for NETs. This was before the current multi disciplinary team was setup but it did all seem so very organised and I felt comfortable, albeit apprehensive. Worth pointing out that surgery is not normally offered in cancer at Stage 4 but the slow growing nature of…
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RonnyAllan.NET – Newsletter 1st August 2020

RonnyAllan.NET – Newsletter 1st August 2020

Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email External news of interest Not surprisingly, news about Neuroendocrine Cancer has been a bit slow but I sense that things are starting to pick up. Here's a few items I picked up during July from my google alerts or from twitter (a key source for me to hear about what's happening). 1. 64Cu DOTATATE PET scans. This is an alternative scan that's been in use in Europe but is undergoing trials in US - it has some advantages in particular a more logistically efficient generator system than the Ga68 PET. There's been an announcement of an expanded access program in US providing access to nuclear PET scans for NET patients…
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Paraneoplastic endocrine syndromes – the NET effect

Paraneoplastic endocrine syndromes – the NET effect

Patient Advocacy, Survivorship
Paraneoplastic syndromes are a group of rare disorders that are triggered by an abnormal immune system response to a cancerous tumour known as a "neoplasm." Paraneoplastic syndromes are thought to happen when cancer-fighting antibodies or white blood cells (known as T cells) mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older people and are most common in individuals with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to the tumor being discovered. These symptoms may include difficulty in walking or swallowing, loss of muscle tone, loss of fine motor coordination, slurred speech, memory loss, vision problems, sleep disturbances, dementia, seizures, sensory loss in the limbs, and vertigo or dizziness. Paraneoplastic syndromes…
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10 years, I’m still here

10 years, I’m still here

Awareness, Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I finally made 10 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, 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…
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Don’t be cavalier with a cancer diagnosis

Don’t be cavalier with a cancer diagnosis

Awareness, Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  [caption id="attachment_19230" align="aligncenter" width="640"] Denial[/caption]I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told.  In fact it happened on 24th July 2010, 10 years to the date this post was published.  (Spoiler alert - I'm still here).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…
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Neuroendocrine Cancer – no sweat!

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I see so many questions and comments in my private group about 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. I decided to extend it to diet because diet can be involved and late eating may result in a night sweat (technical name - sleep hyperhidrosis). One site, Medical News Today, indicated around…
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Post COVID lockdown – the new normal is not normal

Post COVID lockdown – the new normal is not normal

Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This new normal just isn't normal! I'm lucky to have beautiful forests to my east and west but to my south is probably the best beach coastline in UK. We decided to walk along a section of that award winning 7 mile bay. But we went via a shop. I had to return something purchased shortly before lockdown and like most shops which shut, this one extended the returns period due to COVID-19. The shop was a big one and easy to distance, but the preparations were very good indeed. I donned a face covering and upon entering, I was instructed to wash my hands with sanitiser before proceeding to…
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Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 12) – a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 12) – a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 12 of my Living under COVID-19 series.  A story of surviving, cycling, Scottish holiday memories including the 'Fairy Pools'7th JuneNational Cancer Survivors Day was on 7th June. It's a celebration of life and if you're reading this, you're surviving. Share and let people know you're still here. Or just tell me below!I'm still here!#NationalCancerSurvivorsDayA wee story to finish off #NationalCancerSurvivorsDay22 miles of cycling today to celebrate life. A story about woods, animals, a long straight road with an interesting history and a bombing range.We had already cycled and walked parts of this route but our new e-bikes mean we can go further in a shorter space of time - i.e. we…
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The NETest® – a Chromogranin A replacement and more?

The NETest® – a Chromogranin A replacement and more?

Clinical Trials, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Tumour Markers GeneralFor some years the gold standard tumour marker for Neuroendocrine Neoplasms (NENs) has been and remains today, Chromogranin A (and for certain scenarios Chromogranin B and C can provide some additional clues).  Pancreastatin, which is actually a molecule of Chromogranin A, is another marker touted but appears to be limited to USA. Its main advantage is the ability to better handle the effects of Proton Pump Inhibitor (PPI) use which is prevalent in the general population.  As we move to a new era of molecular/genetic tumour markers, there's a danger that NENs will be left behind, stuck with diagnostic tools not capable of meeting new demands. I see a…
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RonnyAllan.NET – Newsletter 1st July 2020

RonnyAllan.NET – Newsletter 1st July 2020

Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Coping with lockdownDuring June, I decided I continued to be active outside despite the fact I see myself as someone at risk, not just because of the Neuroendocrine Cancer but also due to a history of chest infections and mild asthma. Mental health can be as important as physical health in times of stress and anxiety so I took to the outdoors to tell my story of how I was coping. Of course the outdoors is also a garden (yard) and so that counts too!  Back in March I told the story of my own symptomatic period and perhaps one day I might find out if I have antibodies when I'm…
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SSTR PET – Ga68-DOTA-JR11 vs Ga68-DOTATATE

SSTR PET – Ga68-DOTA-JR11 vs Ga68-DOTATATE

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Headline - 68Ga-DOTA-JR11 was found to detect significantly more liver lesions than 68Ga-DOTATATE; however, 68Ga-DOTATATE detected more bone lesions than 68Ga-DOTA-JR11.Although it had been in trial use for some years in Europe and elsewhere, the formal approval of 68Ga-DOTATATE has led to an increase in the development of other radionuclides, some in conjunction with therapeutic options (i.e. PRRT) making a 'theranostic' approach to diagnosing, treating and surveillance Neuroendocrine Cancer patients with somatostatin receptor positive tumours.  I also wrote last year about another option called 64Cu, something already available in Europe, in particular Denmark.In another development which has been running for some time, a Ga68 variant called 68Ga-DOTA-JR11 has been in trial…
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Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 11) – a story of Walking the Wall, coping strategies and the London Ga68 PET

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 11) – a story of Walking the Wall, coping strategies and the London Ga68 PET

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 11 of my Living under COVID-19 series.  A story of Walking the Wall, coping strategies and the London Ga68 PET 30th May 2020 Still recovering from the long walk .... if you missed it it's here. We have another 3 or 4 days of hot weather so it's bikes again soon. Today my Facebook memory reminded me of finishing our 84 mile walk along Hadrian's Wall on 31st May 2014. We were so happy and relieved to finish - went straight to the only pub in the village of Bowness for a pint of well earned beer  Lead picture is the view we had towards Scotland where we stayed that…
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Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Clinical Trials, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Click here to see the A to Z of Neuroendocrine Cancer What is Sunitinib (Sutent)? Manufactured by Pfizer, this is a targeted biological therapy or more accurately, a multitargeted tyrosine kinase inhibitor (TKI).  You may also see it described as an anti-angiogenic agent on the basis that these tumor types are highly vascularized and show high expression of something called vascular endothelial growth factor (VEGF), a key driver of angiogenesis in neuroendocrine tumors. Because NETs are generally hypervascularized tumors, treatment with antiangiogenic drugs seems a rational approach. A complex process but in the simplest of terms, sunitinib blocks a particular enzyme and keeps tumors from making their own blood vessels,…
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Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Clinical Trials, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Click picture to read the A to Z of Neuroendocrine Cancer What is Everolimus (Afinitor)? Manufactured by Novartis, this is a targeted biological therapy or more accurately, a mammalian Target of Rapamycin (mTOR) inhibitor. It works by stopping some of the signals within cells that make them grow and divide. Everolimus stops a particular protein called mTOR from working properly. mTOR controls other proteins that trigger cancer cells to grow. So everolimus helps to stop the cancer growing or may slow it down.  The drug is also approved for Renal Cell Carcinoma (RCC) and hormone-receptor-positive advanced Breast Cancer.The drug is administered in oral form (tablet). The recommended dose for AFINITOR®…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 10) – A story of the Wall, Swans, Dundee and New Forest History

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 10) – A story of the Wall, Swans, Dundee and New Forest History

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 10 of my Living under COVID-19 series.  A story of the 'Wall', Swans, Dundee and New Forest History26th May 20206 years ago today, Chris and I set off an a 6 day hike across the 2000 year old world heritage site of Hadrian's Wall in northern England. It was an experience we'll never forget, not just for the long 84 mile slog but the natural beauty, the interesting places we visited and the people we met. We were raising funds for the local NET guys PLANETS Charity - co-founded by my surgeon (Neil Pearce) and interventional radiologist (Brian Stedman) and brilliantly ran by our friend and NET Patient Layla Stephen. I think…
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My interview with ITM – I’m still here!

My interview with ITM – I’m still here!

Awareness, Clinical Trials, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I was delighted to be contacted by ITM AG, a Germany based pharmaceutical company specialising in targeted radionuclide technology in precision oncology (e.g. Peptide Receptor Radionuclide Therapy - PRRT).  The company is formally known as  ITM Isotopen Technologien München.One of their pipeline developments is 177Lu-Edotreotide / Solucin® in patients with neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NET).  The development is via the COMPETE Phase III Clinical Trial which is being conducted worldwide in 11 countries at 33 sites and is open for recruitment.  I actually wrote about this trial after attending a workshop at the annual ENETS conference in 2018.I was delighted when they wanted to interview me to…
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Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 9) – a story of cream teas, peaks and blue sky

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 9 of my Living under COVID-19 series.  A story of cream tea, peaks, blue sky and more peaks!19th May 2020[caption id="attachment_18552" align="aligncenter" width="640"] In Brockenhurst, a New Forest town where animals mix freely with humans![/caption]Figure of eight bike ride yesterday around the outskirts of my town. 9 miles (still feeling the 23 miles from Saturday!). No photos, just a quick spin session. However, one of those Facebook memories came up from last year where we visited a nice town called Brockenhurst in the New Forest. Lovely little place smack bang in the middle of the National Park. The reason it caught my eye was a picture of an English…
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