01 Mar 2021
By Ronny Allan
0 Comments
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. …
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27 Feb 2021
By Ronny Allan
0 Comments
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. Two of many examples:   Read more - click on the picture above.  Let's do the math not the myth.   There are some in the community who will suggest that…
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25 Feb 2021
By Ronny Allan
0 Comments
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,…
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16 Feb 2021
By Ronny Allan
0 Comments
Ronny Allan – Top 10 for 2020 – Neuroendocrine Cancer

Ronny Allan – Top 10 for 2020 – Neuroendocrine Cancer

Awareness
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…
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13 Feb 2021
By Ronny Allan
0 Comments
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…
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04 Feb 2021
By Ronny Allan
2 Comments
On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

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

Awareness, ,
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: If the community does not address these 3 issues, awareness will continue to fail and continue to flounder.  I standby to help with the change, in fact, my work started in 2015 and continues. 1.  To be told your cancer isn't really cancer is an insult. 2.  To be called an animal is to be dehumanised. 3.  To be rare when you're not, is a step back and is hindering access to clinical trial research. WE…
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31 Jan 2021
By Ronny Allan
3 Comments
Ronny Allan Newsletter – 1st February 2021

Ronny Allan Newsletter – 1st February 2021

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Overview 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…
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04 Jan 2021
By Ronny Allan
0 Comments
The Invisibility of Appendiceal and Colorectal NETs – do the math

The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient Advocacy, , , , , , , , ,
Do the math not the myth In 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…
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31 Dec 2020
By Ronny Allan
0 Comments
Ronny Allan Newsletter – 1st January 2021

Ronny Allan Newsletter – 1st January 2021

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Happy new year everyone! OverviewJust when things couldn't get weirder, they get weirder.  At the beginning of the year, I started as I meant to go on, more advocacy work, more support for patients, grow my pages, grow my website, grow my private group.  I achieved most of it (and then some).  In February/March, it became obvious things were happening that would have serious consequences.  Nonetheless, I think most people thought it would all be over in a few months.…
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30 Dec 2020
By Ronny Allan
3 Comments
A 2020 blog review (RonnyAllan.NET)

A 2020 blog review (RonnyAllan.NET)

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Click picture to view the A to Z of Neuroendocrine Cancer by Ronny Allan I should be happy with just over a third of a million views in 2020 but I'm not!   I had a target to beat 370,500 from 2019 but fell short by 35,000 (an average month).  However, you can see from the chart below, I was on track in Jan/Feb but knocked sideways by the COVID pandemic in March to August. I never got back above 30k…
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23 Dec 2020
By Ronny Allan
2 Comments
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 and Research, Patient Advocacy, , , , , , , ,
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 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…
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17 Dec 2020
By Ronny Allan
4 Comments
The other Big C can be dangerous too

The other Big C can be dangerous too

Living with Neuroendocrine Cancer, ,
I managed to avoid a C-19 infection all the way through several lockdowns, and I deployed a rigorous protection regime throughout. Ditto for Chris.  I have a chest infection history, so for me, it was a no-brainer to take advantage of the vaccines on offer.July 2022 - boom!  It slipped through the net (no pun).   I have to say it was not an enjoyable experience and I would not like to repeat it.   December 2023 - boom! Back to back COVID and chest infection.read more about that episode here:Ronny Allan - I delayed this post for two main reasons, firstly...…
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13 Dec 2020
By Ronny Allan
2 Comments
Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

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

Clinical Trials and Research, 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…
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08 Dec 2020
By Ronny Allan
0 Comments
Lanreotide: Eleven more years please!

Lanreotide: Eleven more years please!

Inspiration, Treatment, , ,
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 11 years of Lanreotide on 9th December 2021.  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…
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01 Dec 2020
By Ronny Allan
15 Comments
2 Million!

2 Million!

Awareness, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
Today, 27th October 2022, I can confirm the 2 million views milestone has been reached. I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and in December 2020, a Christmas present of one and a half million!  Fast forward to November 2021 and it's one and three-quarters million.That is THANKS to you guys for reading and sharing. When I first set up this blog in Apr 2014, it was just to help spread awareness (and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall…
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01 Dec 2020
By Ronny Allan
0 Comments
Ronny Allan Newsletter 1st December 2020

Ronny Allan Newsletter 1st December 2020

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This newsletter covers a busy November with a look ahead for December and beyond.  October 2020 was manic, but November was just as manic but in a different way.  It was also a better month in terms of growth (increased viewing statistics etc).In UK. most of November had been under new COVID restrictions but due to the weather this time of year, I was not able to exploit that as much as the first lockdown in April/May.  Despite that, I'm built…
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15 Nov 2020
By Ronny Allan
4 Comments
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…
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01 Nov 2020
By Ronny Allan
1 Comment
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…
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30 Oct 2020
By Ronny Allan
9 Comments
Piss off cancer – I’m 67.5

Piss off cancer – I’m 67.5

Awareness, Inspiration, ,
I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what…
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22 Oct 2020
By Ronny Allan
2 Comments
Early diagnosis of late stage cancer!

Early diagnosis of late stage cancer!

Awareness, , , ,
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…
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09 Oct 2020
By Ronny Allan
5 Comments
Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patient

Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patient

Awareness, 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). The Masters Trophy is one of the prestigious titles in the international snooker world and it was a belated honour that the trophy was renamed…
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30 Sep 2020
By Ronny Allan
0 Comments
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.…
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18 Sep 2020
By Ronny Allan
1 Comment
Clinical Trial: Phase II CLARINET FORTE Somatuline Autogel (Lanreotide) increased dosing frequency

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

Clinical Trials and Research, Treatment, ,
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 frequency (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…
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12 Sep 2020
By Ronny Allan
1 Comment
Clinical Trial of Tidutamab in Neuroendocrine Cancer (DUET-1)

Clinical Trial of Tidutamab in Neuroendocrine Cancer (DUET-1)

Clinical Trials and Research, , , , , ,
UPDATE:  13th July 2022Xencor halted this clinical trial due to disappointing results.  Click here to read moreXencor, 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 2021 Multidisciplinary NET Medical Virtual Symposium (note - it was also presented at NANETS 2020). What are monocloncal antibodies?  See here About Tidutamab Monoclonal antibodies are laboratory-produced molecules engineered to…
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10 Sep 2020
By Ronny Allan
4 Comments
“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…
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05 Sep 2020
By Ronny Allan
0 Comments
Flower power and the happy hormones

Flower power and the happy hormones

Inspiration, Living with Neuroendocrine Cancer, , , , ,
One of the featured pictures below is a sunflower from 2015, something I planted with my own hands, and it grew taller than me (not difficult), 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 with the outcome!  It made me happy just to look at it! My most liked Facebook posts in 2020 (the year of COVID) related to plant…
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02 Sep 2020
By Ronny Allan
0 Comments
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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31 Aug 2020
By Ronny Allan
2 Comments
RonnyAllan.NET – Newsletter 1st September 2020

RonnyAllan.NET – Newsletter 1st September 2020

Newsletters
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…
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01 Aug 2020
By Ronny Allan
0 Comments
RonnyAllan.NET – Newsletter 1st August 2020

RonnyAllan.NET – Newsletter 1st August 2020

Newsletters
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…
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28 Jul 2020
By Ronny Allan
3 Comments
Paraneoplastic Syndromes – the NET Effect

Paraneoplastic Syndromes – the NET Effect

Patient Advocacy, Survivorship, The NET Effect Series, , , , , , , ,
Although several hypotheses have been proposed regarding the pathogenesis of Paraneoplastic Syndromes (PNS), the precise mechanism that leads to the development of PNS remains largely unknown. In simple terms, pathogenesis means "the manner of development of a disease". Disclaimer. I read widely and noted various papers where there was clearly confusion about the classification of paraneoplastic in relation to Neuroendocrine Neoplasms.  Some papers grouped known Neuroendocrine Tumour hormonal syndromes in, but others were more specific by filtering these into ectopic scenarios.  I eventually filtered out papers based on the expertise of the authors and the common threads running in each…
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26 Jul 2020
By Ronny Allan
7 Comments
10 years, I’m still here

10 years, I’m still here

Awareness, Inspiration,
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…
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24 Jul 2020
By Ronny Allan
10 Comments
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  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,…
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17 Jul 2020
By Ronny Allan
4 Comments
After lockdown – the new normal is not normal

After lockdown – the new normal is not normal

Inspiration, , ,
The new normal is not normal 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…
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13 Jul 2020
By Ronny Allan
4 Comments
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,
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…
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30 Jun 2020
By Ronny Allan
0 Comments
RonnyAllan.NET – Newsletter 1st July 2020

RonnyAllan.NET – Newsletter 1st July 2020

Newsletters
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)…
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28 Jun 2020
By Ronny Allan
0 Comments
SSTR PET – Ga68-DOTA-JR11 vs Ga68-DOTATATE

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

Clinical Trials and Research, , , , , , , ,
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…
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26 Jun 2020
By Ronny Allan
0 Comments
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 -…
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24 Jun 2020
By Ronny Allan
0 Comments
Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Clinical Trials and Research, Treatment, , , , , , , , , , ,
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…
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22 Jun 2020
By Ronny Allan
0 Comments
Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Clinical Trials and Research, Treatment, , , , , , , , , , ,
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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19 Jun 2020
By Ronny Allan
0 Comments
Ronny Allan: Living with Neuroendocrine Cancer during lockdown (Episode 10) – A story of the Wall, Swans, Dundee and New Forest History

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

Living with Neuroendocrine Cancer,
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…
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18 Jun 2020
By Ronny Allan
1 Comment
My interview with ITM – I’m still here!

My interview with ITM – I’m still here!

Awareness, Clinical Trials and Research, Patient Advocacy, , , ,
Facebook X Pinterest WhatsApp 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 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…
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09 Jun 2020
By Ronny Allan
6 Comments
Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 9) – a story of cream teas, peaks and blue sky

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 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…
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01 Jun 2020
By Ronny Allan
2 Comments
RonnyAllan.NET – Newsletter 1st June 2020

RonnyAllan.NET – Newsletter 1st June 2020

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Newsletters have returned! I ceased publication of monthly newsletters over a year ago, mainly because they were time consuming to compile and the impact was less then my average post in terms of feedback. However, since going into COVID-19 lockdown, I've given that some more thought. Going forward, I'll be sending you out a newsletter each month including an email version as soon as I can get my mailing system software up and running (I've been busy during lockdown!) Coping…
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28 May 2020
By Ronny Allan
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Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 8) – a story of nurses, trees and Canada

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 8) – a story of nurses, trees and Canada

Survivorship,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 12th May 2020I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (….you should’ve seen the other guy). Bar the odd mandatory injection, I avoided nurses (….and boxing) for many years after that. But now ……Today is international nurses day. These guys have hit the headlines recently and many of us are dependant on them for ongoing…
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24 May 2020
By Ronny Allan
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Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Survivorship,
In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self isolation period, the government ordered a “lock-down” (a bit like the shelter in place term used…
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17 May 2020
By Ronny Allan
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Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Survivorship,
In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self isolation period, the government ordered a “lock-down” (a bit like the shelter in place term used…
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13 May 2020
By Ronny Allan
2 Comments
Ronny Allan: Living with Neuroendocrine Cancer during lockdown (Episode 5) – A story of greenery, sun, adventure and Irrfan

Ronny Allan: Living with Neuroendocrine Cancer during lockdown (Episode 5) – A story of greenery, sun, adventure and Irrfan

Living with Neuroendocrine Cancer
This is the fifth part of a new series entitled:  Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions – A story of greenery, sun, adventure and Irrfan During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read. In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was…
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11 May 2020
By Ronny Allan
2 Comments
Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 4) – A story of bikes, ponies, wisteria and Vitamin D 

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 4) – A story of bikes, ponies, wisteria and Vitamin D 

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is the fourth part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions.During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read.In the first update of this series, I explained that I kept my diary going, but again,…
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04 May 2020
By Ronny Allan
1 Comment
Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 3) – An injection, hair cut and a broken tooth

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 3) – An injection, hair cut and a broken tooth

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  This is the third part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions. During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read.In the first update of this series, I explained that I kept my diary going, but…
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25 Apr 2020
By Ronny Allan
0 Comments
Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 2) – the bench walk

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 2) – the bench walk

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is the second part of a new series entitled Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions. During my self imposed isolation of 14 days after developing "a new and continuous cough", I documented almost daily during this period but only on my public Facebook page entitled "my 14 day self isolation diary" - I compiled it here - click here to read. In the first update of this series, I explained that I kept my diary going,…
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