All you need to know about Peptide Receptor Radionuclide Therapy (PRRT)

All you need to know about Peptide Receptor Radionuclide Therapy (PRRT)

NETwork with Ronny © – Newsletter April 2017

NETwork with Ronny © – Newsletter April 2017

Hi NETworkers! Welcome to my sixth 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). Highlights There are two main highlights for April which stood out for me: The publication of my WEGO Health Award PODCAST.  This was a radio interview prior to the announcement that I had won the WEGO 'Best in Show Community' award.  It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course).  If you missed it, you can listen to it by clicking…

NETwork with Ronny © – Newsletter March 2017

  Hi NETworkers! Welcome to my fifth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona.  I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time.  Some of them have been great supporters since the inception of my blog and community. March was a slower month in blogging terms due to…
NETwork with Ronny © – Newsletter February 2017

NETwork with Ronny © – Newsletter February 2017

Hi NETworkers! Welcome to my fourth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don't have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat).  Thank you all so much ♥ January's success…
It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

In 2012, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan.  I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection, and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications.  There had always been a plan to optimise cytoreduction of my…
Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed…
25 Life Lessons From a Two-Time Cancer Survivor

25 Life Lessons From a Two-Time Cancer Survivor

Sometimes, a blog post comes along and it just resonates!  I got chatting with the author who has given me permission to post it here.  Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast cancer 8 years later. I posted her full CV below.Her post "25 Life Lessons From a Two-Time Cancer Survivor" is a fantastic summary of a positive approach to life, despite a cancer diagnosis (or in Shari's case, two). I've seen some similar quotes before but Shari has collated…
NETwork with Ronny © – Newsletter January 2017

NETwork with Ronny © – Newsletter January 2017

Hi NETworkers! Welcome to my third 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). January was a month for breaking records.  I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they're broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer.  Thank you all so much ♥ January was also a month for making new friends after being invited to speak to an…
Endoscopy for NETs – taking the camera to the tumour

Endoscopy for NETs – taking the camera to the tumour

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom.  The mouth route is more accurately called a Gastroscopy…
Theranostics for Neuroendocrine Cancer –  A Find and Destroy Mission

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Theranostics is a joining of the words therapeutics and diagnostics. You may also see it conveyed as 'Theragnostics' and these terms are interchangeable. The basic aim of theranotistics is to find and then destroy the 'bad guys'. With Neuroendocrine Cancer, finding the tumours (the bad guys) can often be a challenge - they can be small and/or difficult to find - they are sometimes expert at camouflage. Moreover, once found, they can then be difficult to treat (destroy), as they can often prove resistant to conventional cancer drugs and many are inoperable due to sheer quantity, spread and positioning. When…
Does your body now have an extra organ? The MESENTERY

Does your body now have an extra organ? The MESENTERY

One of the very first words I heard at diagnosis was the word "Mesentery".  In the news today is the announcement that is now might just be a new organ following accepted findings from research conducted in the University of Limerick Ireland. I always knew it was something which held the small and large intestines in place within the abdomen so like many others, I just thought it was some kind of membrane type structure and I also knew there was some kind of interaction with the peritoneum, another word which I was to become familiar with. This is an important area…

NETwork with Ronny © – Newsletter December 2016

  Hi NETworkers! Welcome to my second 'community' newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!). December was a particularly special month.  For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards.  This paid off and I won the Best in Show 'Community' category in addition to being shortlisted as one of 5 finalists in the blog category.  The community award was special because it means we all won the award as…
Keep your lights burning

Keep your lights burning

I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that it's perfectly acceptable to make simple and light hearted statements about very difficult situations. The other great thing is that you can pick up where you left off 30 years ago, as if it were only yesterday.  And 'Bravado' is not only acceptable, it's mandatory! A week later,…
Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Updated 19th August 2025I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types?  As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why.  If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge.So, let's get definitions out of the…

Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Very happy to win the WEGO 2016 Best in Show Community which is some ways is a recognition for my blog based on the fact is at the core of what I do and in many ways, the other apps are (currently) just 'fronts' for this output.  Whether you read my blog direct from WordPress, Facebook, Twitter, Pinterest or any other platform you find it, you are all members of this award-winning community! My WEGO Profile is here - look out for…
NETwork with Ronny © – Newsletter November 2016

NETwork with Ronny © – Newsletter November 2016

    Hi, welcome to my first newsletter, a pilot for a monthly summary of NET news, views and ICYMI (in case you missed it!). What a month November has been - we had NET Cancer Day build up and I've been working hard to put on a good show for the 2016 WEGO Health Activist Awards (results expected around 6/7 Dec) whilst at the same time maintain my other campaigning activity across a wide range of social media platforms.  Due to increased activity, I recorded the second highest monthly viewing figures ever - over 13,000 hits on my blog site in…
Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

I've never used the "reblog" button until now ............ this is such a powerful post, so I wanted those following me on WordPress or email, and are not on Facebook, to have the opportunity to read it.Read the original article here from Nurse Lindsay Norris - Click here https://www.youtube.com/watch?v=c8vUETN8XVE Click to read more Sometimes people don't "get it" until they get it - read more here. Click here and answer all questions to join my private Facebook group Thanks for reading.RonnyPersonal Facebook. Like this page please.Blog Facebook. Like this page please.Awareness Facebook Like this page please.Sign up for my newsletters -…
Neuroendocrine Cancer – Exciting Times Ahead!  

Neuroendocrine Cancer – Exciting Times Ahead!  

In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc.  Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly.  However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time.  There's even more in the pipeline and I'm hoping…
Living with NETs – a patients included award winning site

Living with NETs – a patients included award winning site

It's no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients.  It was subsequently launched on NET Cancer Day 2016 and is very aptly named 'Living with NETs'.  Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative.  And, this is great awareness for Neuroendocrine Cancer at a major pharma event. I'm also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event…
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That's interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary - click here to read…

Neuroendocrine Cancer: Patient Power!

There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in…

“Not the Stereotypical picture of sick”

I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others?  I like to look for the positive things these well-meaning messages can convey.  Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell?  If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides".  Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few…

Procrastination – it’s a killer

It's amazing to think that one minute I'm back from a holiday in the Caribbean and the next minute I'm being told the inside of my body is a 'train crash'. Just how does that work?  In July 2010, I said to the Gastroenterologist investigating my low hemoglobin "I'm not even feeling ill". He sent me to an Oncologist who then told me that without treatment, the prognosis wasn't good (i.e. I would eventually die). I also told him I wasn't feeling ill ....as if my protest was somehow going to reverse the situation! The term 'silent cancer' was apt in…

Stop talking about it, just go do it!

"Yes, we must do this one day ......." and then we don't! We're all guilty of it aren't we?For years Chris and I have discussed travelling around the coast of Scotland and we're just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ....... "We must do this one day......."I've even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new "North Coast 500" campaign which…
Living with Cancer – if you’re reading this, you’re surviving

Living with Cancer – if you’re reading this, you’re surviving

You may sometimes feel like you're not surviving but if you're reading this then you most definitely must be! For the first few years after my diagnosis, I avoided using the word 'survivor' in relation to my incurable cancer. I had no idea what was going to happen. It just didn't seem to sit right despite the fact I'm a 'glass half full' kind of guy.However ........ I was studying the term 'Survivorship' and found it also applies to those living with incurable and long-term cancer. This piece of research totally changed my thinking.Today is National Cancer Survivors Day (which…

Exercise and Cancer: Forward is Forward

One of the very first blog posts I wrote was about exercise. Basically I said it was like medicine and I have not changed that view much.  Exercise improves mental health by reducing anxiety, depression, and negative mood but it's also known to help improve self-esteem and cognitive function.  You will not find a single healthcare institution that doesn't recommend exercise in any shape of form. All cancer patients should attempt to keep active and this is even more important if you are being treated for long-term cancer. Why? Because keeping active will not only help your physical condition but it will…
What you don’t know might kill you

What you don’t know might kill you

A few weeks before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday.  Both of us were looking forward to a nice break after a hectic start to 2010.  When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, what I didnt know all the time I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', was the fact that Neuroendocrine Tumours had been growing in my small intestine, had spread into my mesenteric lymph nodes, into my liver, into my left…

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

In a previous life, I used the term 'smoke and mirrors' quite a bit.  I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail.  Sometimes there was an element of 'covertness' or a 'hidden agenda'.  It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late.  Some of you will already be seeing where I'm going with this line of thinking -…

Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

New treatments seem to be appearing every month and that is good news for patients.  I have a personal connection to this one though.  In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England.  This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals).  It is the first ever deployment of this type of treatment in UK and Chris and I were…
Clinical Trial: PRRT and Chemo combination therapy

Clinical Trial: PRRT and Chemo combination therapy

Update 2022:  Trial complete.  Results:The final results of this trial were presented at ASCO 2022 where it was concluded as follows:"CONTROL NETs is the first randomized trial to demonstrate efficacy for PRRT in pNETs, in addition to a standard of care. Extended follow up confirms durable CAPTEM/PRRT activity, with superior PFS in pNETs. Late haematologic toxicity was seen in both mNET PRRT arms but was not higher with additional CAPTEM. The activity of CAPTEM/PRRT in pNETs should be tested in the phase III setting" - click here to read the abstract. Combination treatments are common in chemotherapy, but this trial was…
Neuroendocrine Cancer – unexpected detours

Neuroendocrine Cancer – unexpected detours

I've mentioned 'luck' a few times in many of my 'cancerversary' milestones - these tend to make me reflect on my experience.  Even though I was metastatic at diagnosis, I think of myself as lucky on the basis that my tumours were found by 'chance', or to be more accurate, found following an innocuous set of circumstances.  This is a common diagnostic experience for many - but more people need that luck via better education and awareness. Click here to hear me talk about my diagnosis. As we know, Neuroendocrine Cancer can sometimes be very difficult to discover and diagnose.…
Somatostatin Analogues and delivery methods in the pipeline

Somatostatin Analogues and delivery methods in the pipeline

NOTE - THIS IS IN NEED OF AN UPDATE AND IS ON MY LIST OF THINGS TO DOThis is my live blog post covering new developments in the area of new Somatostatin Analogues and new delivery systems. AbstractAs most of you will be aware, there are currently two main types of Somatostatin Analogues (SSA) in use for the treatment of mainstream Neuroendocrine Tumours (NETs) - Octreotide and Lanreotide.  You can click on the links for information on both of these well-known NET treatments.  This post will focus on the not so well known and anything in the pipeline including different delivery…

100,000 blog views – thank you!

NET Cancer Blog has just recorded 100,000 blog views. I'm extremely excited to have reached this major milestone. However, I'm also really grateful to my followers on this blog site, on Facebook, on Pinterest, on Google+ and on twitter for supporting me through thick and thin. Your engagement with my blog whether a simple 'like', a share, a comment, a pin, a tweet, a retweet, an email or via a private message; is not only extremely motivating but also very humbling. Thank you so much for giving NET Cancer 100,000 pokes in the eye! Onwards and upwards to 200,000! Ronny I’m also active on Facebook. …

Patient power – use it!

I recently wrote a blog entitled "Trust me, I'm a Doctor" which was a genuine attempt to say that we should try to work with our Doctors.  However, I also covered the issues that Neuroendocrine Tumour (NET) patients face in finding someone who understands their disease and how best to treat it; and that can on occasion lead to issues with doctor-patient relationships and communication.  The blog then commented on a number of tips for better doctor-patient relationship and communication.  These tips were provided by a Doctor via my friends in Cancer Knowledge Network. In the blog above, there was an underlying…
Tips for doctor patient communication – “Trust me, I’m a Doctor”

Tips for doctor patient communication – “Trust me, I’m a Doctor”

Reviewed and updated 4th June 2022Patient doctor communicationsOne of the most frequent posts on patient groups and forums is about the Patient-Doctor relationship (or occasionally a lack of it.....).   Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010.  The vast majority of people tend to trust Doctors and I'm a bit old-fashioned in this respect.  If you have metastatic Neuroendocrine Cancer, you see medical staff a lot!  Relationships and communication can therefore become more important than ever.However, people with less…

Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service

A team of radiologists and respiratory consultants who introduced a new and more efficient lung biopsy method at Barnet Hospital London, has been named the winner of the NHS Innovation Challenge Prize in the ‘cancer care’ category.  Barnet Hospital is run by the Royal Free London NHS Foundation Trust which is well known for its Neuroendocrine Cancer Centre of Excellence. Not happy with this, they've now gone on to introduce a new service combining this innovative biopsy system with Radio Frequency Ablation (RFA) of tumours in the same procedure. Combined Biopsy with Radio Frequency Ablation (RFA) This new service has significant advantages…
Clinical Trial: Neuroendocrine Cancer drug in the pipeline – Fosbretabulin Tromethamine CA4P (incl combo with Everolimus)

Clinical Trial: Neuroendocrine Cancer drug in the pipeline – Fosbretabulin Tromethamine CA4P (incl combo with Everolimus)

{NEW} added 4 June 2019 From ASCO 2019 conference extract: Of the 17 patients enrolled, 16 completed the 12-week trial. One patient was not evaluable due to noncompliance. No DLTs were observed at day 21. The highest dose of 10 mg daily oral everolimus in combination with weekly 60mg/m2 IV fosbretabulin is the RP2D. No grade 4 or 5 toxicities were noted. Grade 3 toxicities were seen in 5 patients; abdominal pain and hyperglycemia (not related to study drug), fatigue (possibly related), decreased lymphocyte count and anemia (related). Several patients had delay in treatment due to grade 2 AE’s (GI…

Neuroendocrine Cancer – a Doctor’s experience

UNFORTUNATELY, MILL HILL TIMES HAVE REMOVED THE DOCTOR'S STORY FROM THEIR WEBSITE BUT I'M TRYING TO OBTAIN THE SCRIPT ELSEWHERE. When I was undergoing my initial treatment and surgery I didn't really have the knowledge I have now.  I was initially treated by experienced Neuroendocrine Tumour (NET) specialists in an established NET Centre and I guess I felt comfortable with what was happening.  In hindsight, I wish I had studied the disease earlier as I would have understood at the time what was actually happening to my body and more fully understood the treatments I was to undergo. As we…
Your Money or Your Life

Your Money or Your Life

As I have a 2 year old post about Danielle, I wanted to preface it with this message. It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients.  I've been following her story for almost 2 years and she has really inspired me.  The title of this article is based on the title of a TV programme about…

Not all Cancer is simple

So Victoria Derbyshire has breast cancer and has used her 'workplace' as a platform to let people know she is a determined survivor. Nothing wrong with that, it's great cancer awareness for some and inspiration for others (including me). However, reading through various newspaper follow-up articles, blogs and social media comments, I can see criticism by many for producing an over simplified message (see picture below).  Although many of us will be wishing it was so, not all cancer is simple! Take Neuroendocrine Cancer for example. For some, this 'silent' cancer can take years to be finally diagnosed whilst the patient is misdiagnosed with…

PRRT and the NHS England Cancer Drugs Fund (now archived information)

Please note this post is now historic information - PRRT (Lutathera) was eventually approved for use in UK.  See the following post for the very latest on PRRT worldwide - CLICK HERE I was extremely disappointed to learn of the decision to remove PRRT (Lutetium or Yttrium) from the Cancer Drugs Fund (CDF).  You can read the detail of the decision here: CDF Statement.  PRRT has regularly been described by NET specialists and patients as the "magic bullet" due to its potential to shrink or kill tumours.  This is the second Neuroendocrine Cancer treatment to be withdrawn this year, after…

Screw that diagnosis and get on with it!

  Every now and then I see a positive story during my travels around the internet.  When I saw this one from K**** in Pennsylvania, I had to share.  If you're feeling a little bit down and need cheering up, dig out this blog and take a read :-) K**** wrote: "I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43.  I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life. But, things…
Neuroendocrine…..the little suckers get everywhere!

Neuroendocrine…..the little suckers get everywhere!

UNDER REVIEW FOR REPUBLISHING USING 2025 DATAOne of the key milestones in my awareness campaigns occurred when I featured as a guest blogger for one of the biggest cancer 'support' organisations in the world - Macmillan.The aim of the blog 'Sorry I'm not in service' was actually to highlight the consequences of cancer and its treatment (a Macmillan Campaign message), and to a certain extent to highlight the conflict that can often exist between work and cancer. However, it was also a fantastic opportunity for me to grab the interest of the general population with the word 'Neuroendocrine'.  The response was amazing and on twitter it was one…
Sorry, I’m not in service

Sorry, I’m not in service

This blog was first published in 2015 and featured by Macmillan Cancer UK - although they don't feature my guest blog now due to their revised publication rules (but you're reading it now so it doesn't matter!).  See this link to their Facebook post publishing my guest blog click here .....let's activate this 10 year old discussion in the Facebook post comments!  Let's get this post bumped up their Facebook feed - this generates awareness. It's good to be busy, it can take your mind off stuff you don't really want to think about. That was my tactic after being…

Chasing normality

Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be 'controlled' with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured.  More people are living with cancer than ever before and the ratio…

The C Word

'The C Word' or 'The Big C' - the subject which must not be discussed.  Or is this now an out of date phrase?  I read a useful article a month ago where the author debated where we might be if, 50 years ago, we were as open about cancer as we are now (there, I said the word).  Nowadays you cannot turn a page in a newspaper without seeing a story of sadness, inspiration or medical science progress. Certainly the latter has played a huge part in reducing cancer mortality rates and sending more people into remission. We now have much…

Turning a negative into a postive

Interesting piece in the news today and there's an amazing story behind it.  The "Lung Cancer Breathalyser" is not a new technology but following the death of his wife from advanced colon cancer, inventor Billy Boyle has produced something good enough to have been accepted on a trial basis by the NHS. If successful, it has the potential to save thousands of lives. Lung Cancer is a big killer and the survival rate at Stage 4 is around 5%. Let's hope this invention works. When I was reading the article, I immediately recognised his wife as a blogger I was following and who…

Lanreotide – Four more years

This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide:  10 (then 13) more years please! - click here. Lanreotide vs Octreotide - click here. Original post: The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015.  In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale…

Intelligent patients – just what the doctor didn’t order

    I'm extremely pleased and honoured to have been selected as the first guest contributor to feature in the Carcinoid Cancer Foundation's blog site! I've been following these guys since I was diagnosed.  They have been serving the Carcinoid/NET Community for over 44 Years and they are in my opinion the largest and most respected Carcinoid Cancer organisation on the planet. The Carcinoid Cancer Foundation began as the ‘Carcinoid Tumor and Serotonin Research Foundation’ in 1968 when the NIH fund for rare cancers was terminated. The name was changed to the Carcinoid Cancer Foundation in 1995. It is a non-profit…

Disobedient Objects

My wife and I were in London recently and we took the opportunity to visit the world-famous Victoria and Albert (V&A) Museum in South Kensington.  A particular display caught my eye entitled "Disobedient Objects" and I immediately thought it had a scientific sound to it.  Imagining a set of everyday objects which somehow didn't behave as you would expect, it sounded great fun so I wandered in.  How wrong I was, it was actually an exhibition examining the powerful role of objects in movements for social change.  The term 'disobedient' was used as these objects were designed by grassroots social movements mostly for use in street protests.  These ranged…