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

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

Clinical Trials, Patient Advocacy, Survivorship, Treatment
Background.  For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors.  There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com) Episode 2 - Neuroendocrine Tumor Pathogenesis and Molecular Testing Expert insight on the pathogenesis of neuroendocrine tumors and the best use of molecular testing to inform treatment decisions.…
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I thought I was going to die.  I didn’t

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

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

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

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

Let’s Talk About NETs (#LetsTalkAboutNETs)

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

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

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

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

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

A painting from America

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

The 6 E’s

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

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

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told.I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy.  I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'.  I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp speed'.So, why was I admitted to hospital during the diagnostic phase?…
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Ronny Allan Newsletter – 1st March 2021

Ronny Allan Newsletter – 1st March 2021

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

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

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email On Rare Disease Day, what's wrong with a bit of Neuroendocrine Cancer awareness?  Well, there are three main things wrong with Neuroendocrine Cancer awareness: 1. The incidence and prevalence of Neuroendocrine Neoplasms (the combination of Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)) have skyrocketed in the last 40 years to the point that many scientists, epidemiologists and Neuroendocrine specialists are starting to use different terminology, commensurate with the math. Read more by clicking here or on the picture below.  Let's do the math not the myth. 2.  Linked to the issue above, the community remains entrenched in 1907 terminology which needs bringing into 2021. Things have moved on so much…
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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 – I didn’t hear it coming

Neuroendocrine Cancer – I didn’t hear it coming

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

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

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email On World Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness?  Well, there are three main things wrong with Neuroendocrine Cancer awareness:1.  The community remains entrenched in 1907 terminology which needs bringing into 2021. Things have moved on so much but the use of this ancient terminology and what it infers, just keeps us marking time in the last century. It does not do us any favours in awareness terms, nor does it do us any favours in clinical terms.  If clinicians, scientific organsiations (including pharma) and patient advocate organisations will not move on, we as patients and advocates need to pull them along with us.   We need…
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Ronny Allan Newsletter – 1st February 2021

Ronny Allan Newsletter – 1st February 2021

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

Currently trending on RonnyAllan.NET

Patient Advocacy
I realise some of you are busy but if you wanted a quick catch up and summary of what's currently relevant on my site, you can bookmark this article and refer to it time and time again.  It will automatically update the top 10 list below which are the most read posts in the previous 48 hours on my site.  These views will have come from various sources of reading including my Facebook pages, Twitter, Pinterest, Wordpress, newsletters and in my private group.  I hope many of you will find this new tool useful.Thanks as usual for your phenomenal support. Ronny Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email My Facebook page is click here Click here to join my…
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Ronny Allan Newsletter – 1st January 2021

Ronny Allan Newsletter – 1st January 2021

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

A 2020 blog review (RonnyAllan.NET)

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

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

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

Thanks a MILLION …and then some!

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

Ronny Allan Newsletter 1st December 2020

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

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 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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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 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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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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After lockdown – the new normal is not normal

After 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

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) 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 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 ran by our friend and NET Patient Layla Stephen. I think we raised just over £4000 on that walk, more than expected. Plus it was the only reason at the time…
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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

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…
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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 care etc.I'd like to publicly thank all the nurses and healthcare assistants who helped me get better and brought me here today - and who continue to watch my back!Always thank…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 in USA) but out of self isolation, we were still…
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Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 in USA) but out of self isolation, we were still…
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Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email "An unusual disposition of tumours" A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases for late diagnoses. Apart from the primary tumour invading nearby tissue/organs, the most common spread is the lymph nodes, these can take you from a localised Stage 1 to loco-regional Stages 2 and 3. Often the term distant spread infers metastatic disease (stage 4) to the liver but I had some lymph nodes 'misbehaving' much further away than that. After my first nuclear scan (In-111 Octreoscan) during my diagnostic workup in Jul-Aug 2010, two areas lit up - left axillary nodes (armpit) and…
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We Remember – A message of hope in the time of the Coronavirus!

We Remember – A message of hope in the time of the Coronavirus!

Inspiration
I really like this video because it covers the positives of the coronavirus crisis, despite the daily gloom. At the time of writing, it's clear things will get worse before they improve. However, this crisis will end sometime, hopefully soon; and we'll look back on this period with multiple emotions. Of course we will be sad about those who died and for the lives that were changed. But we will also look back fondly at how we dealt with these changes, the new ways of thinking, new outlooks, new friends, new relationships and new communities. Personally, I can't wait for this crisis to be a distant memory but we should all remember the positive things happening now and that will hopefully be maintained going forward. There will be new communities…
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COVID-19 and Cancer Treatment and Surveillance

COVID-19 and Cancer Treatment and Surveillance

Patient Advocacy, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email NEW CONTENT added 14th June 2020.For US patients - see the recently produced NANETS guidelines which provides guidance on the following:How is treatment for patients with NET/NECs likely to change during the COVID-19 outbreak?What should providers do to prepare their clinic for patients?Should octreotide or lanreotide be delayed or stopped in NET?Surgery: Can/should surgery be canceled or delayed?Liver-directed therapy: Should liver embolization be performed? Is one modality preferable to another in the context of the COVID-19 outbreak?Lutetium Lu177 DOTATATE PRRT: Should PRRT be delayed if not yet started? Should the next treatment plan be postponed if in the middle of the planned PRRT course?Iobenguane I 131: Should iobenguane I 131…
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Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Patient Advocacy, Survivorship
OPINION. I guess many people are feeling pretty scared right now.  Add age, a chronic disease, cancer, a lung illness or any condition that has a level of immunosuppression, and it seems to become even more scarier when you read the news.  I think the 'not knowing' how this crisis is going to pan out has made the situation quite surreal.  We seem to have gone from a fairly routine day to day living, thinking coronavirus is something that happens in another faraway country and then BANG, it's on our doorstep.  I don't know about you but I would hate to have survived metastatic Cancer for the last 10 years only be taken out by a stupid tiny virus because I forgot to wash my hands. Thus why I intend…
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Coronavirus 19 (COVID-19): risks for cancer patients

Coronavirus 19 (COVID-19): risks for cancer patients

Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date.  For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation's guidance.UPDATED 22 Apr 2020 - COVID-19 and MEN patients. See article 7 below.UPDATED 5 Apr 2020 - excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article 6 below.UPDATED 28 Mar 2020 - see two links from…
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Neuroendocrine Cancer Nutrition Series Part 6 – featuring the 2020 video series by Tara Whyand RD

Neuroendocrine Cancer Nutrition Series Part 6 – featuring the 2020 video series by Tara Whyand RD

Diet and Nutrition
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer. In the previous parts of this series I focused on the following:Article 1 – Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietitian. This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.Article 2 – Malabsorption. Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.Article 3 – ‘Gut Health’. This followed on from the first…
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