Ronny Allan - Living with Neuroendocrine Cancer

24Jun 2016 by Ronny Allan 14 Comments

What you don’t know might kill you

[caption id="attachment_16224" align="aligncenter" width="640"] Barbados heaven but I was oblivious to the fact that cancer was trying to kill me[/caption] 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 armpit and into my left clavicle area. I also had…

15Jun 2016 by Ronny Allan 4 Comments

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Awareness, Living with Neuroendocrine Cancer

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 - if so, you worked out my hidden agenda! 'Smoke and Mirrors' is basically a term connected to the art of deception, a con trick, a way in through confusion and…

13Jun 2016 by Ronny Allan 4 Comments

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

Awareness, Treatment

[caption id="attachment_6231" align="aligncenter" width="500"] IORT[/caption] 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 happy to shred the soles of our feet to support this worthy cause, particularly when the two guys behind the idea were my surgeon (Mr Neil…

09Jun 2016 by Ronny Allan 17 Comments

Let’s talk about living with NETs

Inspiration, Survivorship

Snoopy has a point Opinion. There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". I also see it occasionally in a list of internet search terms that led to a hit on my blog site (I don't know who searched, just that this search term led to my site being viewed). I just hope they found this post! Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question, but I believe there are times and places for it and that a public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die…

08Jun 2016 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Make some noise for this silent cancer

Awareness

Reviewed and updated 28th September 2021 OPINION: One of the key aims of my blog is to create more awareness of Neuroendocrine Cancer, its peculiarities, its effects, its ability to deceive, its ability to kill if left undetected and/or untreated; and its impact on Quality of Life (QoL). There are millions of people out there doing similar with thousands of other conditions. That means even to stand out a little, messages must be compelling, must attract attention; and must catch people's interest. Unfortunately, many campaigns I see are outdated, based on flawed themes from the 1980s and as a consequence, awareness of Neuroendocrine Cancer stands still. In the last 72 months, I've generated a few 'different' awareness campaigns, some of which have been more successful than others and I learn…

07Jun 2016 by Ronny Allan 7 Comments

It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy

[caption id="attachment_6092" align="alignnone" width="500"] that's me in the middle[/caption] When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date. As a novice NET patient, I found out my 5-year survival rate was only 38%. It looked like a credible site but I now…

28May 2016 by Ronny Allan 8 Comments

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine Cancer

[gallery type="square" ids="16946,16947,16934,16935,16936,16937,16938,16939,16940,16941,16942,16943,16944,16945"]In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more. A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited for signs of some stability.I was getting into some old habits…

25May 2016 by Ronny Allan 5 Comments

The 5 E’s (of Carcinoid Syndrome)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid syndrome" in this article, I only mean the syndrome that is caused by what was once called "Carcinoid Tumors", i.e. predominately serotonin secreting types which mainly metastatic cases where the well differentiated tumours are found in the small intestine, but much less commonly in appendiceal, very rarely in rectal (rarely even at stage IV), lung (more atypical and around 10%), and one or two other significantly less…

20May 2016 by Ronny Allan No Comments

Clinical Trial: PRRT and Chemo combination therapy

Clinical Trials and Research

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 different as it effectively combined the use of different therapies both with their own toxicity risks, albeit low in each therapy type. The use of PRRT and chemo (in particular…

19May 2016 by Ronny Allan 9 Comments

Don’t worry, I really am OK!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

[caption id="attachment_6843" align="aligncenter" width="377"] I really am OK![/caption] I read an interesting article in the BBC entitled "Why people keep quiet about their battle with cancer". The usual range of reactions and fears can be found in this story and it made me think about my own experience. I think there are two key themes involved here: Talking about Cancer Managing your illness Firstly, as I have an international audience, I thought I'd introduce what might not be a well-known British trait - the 'stiff upper lip'. For the uninitiated, I'm defining this as "One who displays fortitude in the face of adversity and within that, exercises great self-restraint in the expression of emotion, rarely asks for help and just suffers in silence." That perfectly explains the accompanying graphic! That definition also covers the two key themes above, talking…

09May 2016 by Ronny Allan 5 Comments

Neuroendocrine Cancer: I Can

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Opinion. Most people with an incurable Cancer will go through both good and bad periods. I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point. I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". I don't like playing the victim so I'm just trying to make my new normal ..... normal! And I make no apologies for my approach. When I wrote my blog post "Living with Neuroendocrine Cancer - it takes guts", that wasn't me being one of those trendy bloggers saying the sort of things people want to hear. Nor was my post "Neuroendocrine Cancer –…

21Apr 2016 by Ronny Allan 12 Comments

Neuroendocrine Cancer – unexpected detours

Awareness, Inspiration

I've mentioned 'luck' a few times in the past month following some more '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. Click here to hear me talk about my diagnosis.As we know, Neuroendocrine Cancer can sometimes be very difficult to discover and diagnose. However, sometimes with a bit of luck or a chance event, it can be intercepted and can then often lead to a much better outlook for the person concerned. But sometimes there is also a cost, and I don't just mean financial (although that is also a very real problem). Despite me…

15Apr 2016 by Ronny Allan 36 Comments

Neuroendocrine Cancer – it takes guts

Survivorship

The majority of Neuroendocrine Tumours (NETs) are slow growing (well differentiated). However, many tumours can be silent (non-functioning) for some years before they start to 'function' and inform you of their presence. Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments. Moreover, in most cases, the appearance of a functional tumour often indicates the disease has metastasised and could now be incurable. Some tumours will grow and metastasise without syndromes, i.e. they are non-functional. These may become functional at some point in the future. However, with most slow-growing NETs, this does not mean terminal as there are various treatment options even at Stage IV. In fact, NETs are one example where surgery at the metastatic stage can often provide prognostic advantages…

12Apr 2016 by Ronny Allan 12 Comments

Neuroendocrine Cancer – my liver surgery

Treatment

Laparoscopic Surgery ("Keyhole") From day 1 of my diagnosis, I knew my liver was going to need some attention, but I had always known that total removal of all tumours would not be possible - the diagnostic scan confirmed I had an incurable disease. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several with quite avid isotope activity.However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery which took place Nov 2010 - I wrote about this as Part 1 and Part 2 stories. As we are talking about my liver, it's worth noting that a bland Liver…

04Apr 2016 by Ronny Allan 3 Comments

Somatostatin Analogues and delivery methods in the pipeline

Awareness, Clinical Trials and Research, Living with Neuroendocrine Cancer

This 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 systems.Those who have read the Octreotide/ Lanreotide patient leaflets will know those SSAs are also used in the treatment of a condition known as Acromegaly. You can see why the drug is used for both as they control the release of excess secretions of various substances, a…

31Mar 2016 by Ronny Allan 20 Comments

Telotristat Ethyl (XERMELO) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues

Treatment

What is Telotristat Ethyl? Telotristat Ethyl is a significant introduction to the treatment of Carcinoid Syndrome diarrhea. It's the first addition to the standard of care in more than 16 years and the first time an oral syndrome treatment has been developed. The drug was previously known as Telotristat Etiprate but was changed to Ethyl in Oct 2016. 'Etiprate' was previously a truncation of 'ethyl hippurate'. The brand name is XERMELO® Who is the drug for? The drug may be of benefit to those whose carcinoid syndrome diarrhea is not adequately controlled by somatostatin analogues (Octreotide/Lanreotide). It doesn't replace somatostatin analogues - it is an additional treatment alongside. Where is it currently approved? The US FDA approved the drug 28 February 2017. On 19 September 2017,the European Commission approved Xermelo® (telotristat ethyl) for the treatment…

21Mar 2016 by Ronny Allan 5 Comments

100,000 blog views – thank you!

Living with Neuroendocrine Cancer

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. Like my page for even more news. Disclaimer My Diagnosis and Treatment History Most Popular Posts

21Mar 2016 by Ronny Allan 15 Comments

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship

[caption id="attachment_5240" align="aligncenter" width="600"] Scanning - a piece of cake![/caption] "I'm only as good as my last scan". I received this comment last week in response to one of my posts and I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5HIAA are clearly useful but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and a scan is normally the confirmation required whether it's a CT, MRI or PET (etc). IF YOU CAN SEE…

17Mar 2016 by Ronny Allan 10 Comments

Dear Doctors – There’s no such thing as a ‘good’ cancer!

Awareness

At a follow-up meeting during my diagnostic phase in July 2010, the specialist who was investigating my pre-diagnosis secondary care appointment, was clearly suspicious that I had cancer. As the results of my liver biopsy were not yet in, he was not in a position to declare his findings. However, following my revelation about flushing during this meeting, he immediately guessed the biopsy would confirm Neuroendocrine Tumour (NET). I can't remember much of the conversation but I vividly remember him indicating that of all the issues out there to get, this was one of the better ones. He was using a meter analogy action with his hands swinging towards the 'good' reading! I hadn't gone there that day to receive a cancer diagnosis but he was clearly trying to put me at ease and I'm sure it was with the best…

09Mar 2016 by Ronny Allan 4 Comments

A spotlight on Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine Cancer

This is an overview, if you require detail, try my more comprehensive post by clicking here or on the picture[caption id="attachment_38157" align="aligncenter" width="640"] Click on the picture to read more[/caption]OverviewWe all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN). I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine-related effects.MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues). Neoplasia is just another name for tumour and these can be non-cancerous (benign) or…

25Feb 2016 by Ronny Allan 4 Comments

Carcinoid – What’s in a name?

Awareness

A quick primer on the word 'CARCINOID'. It originates from the term 'Carcinoma-like'. 'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'. This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion (..... and anger!). The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour. That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed out by the World Health Organisation (WHO) in 2010 subsequently updated by WHO 2017. The correct term for all types is actually Neuroendocrine Neoplasm (NEN) which is an umbralla…

18Feb 2016 by Ronny Allan 12 Comments

Patient power – use it!

Inspiration, Patient Advocacy

[caption id="attachment_4931" align="alignleft" width="300"] Team Effort[/caption] 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 theme indicating certain cancer patients might need to know more about their disease than would be considered normal and that can influence the nature of the…

15Feb 2016 by Ronny Allan 6 Comments

Sometimes you just gotta climb that hill!

Inspiration

[caption id="attachment_31064" align="aligncenter" width="640"] It's not just the exercise, it's the mental health aspect[/caption]It was a little bit foggy, wet, windy and very cold and that was at the bottom of the hill we were looking up at. It wasn't a terribly big hill, but I knew it would need considerable effort and some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we simultaneously said, "do we really want to go up that in this weather?" Oh yes ....... no pain, no gain! So, we went up the hill and it hurt. Up there, it was wetter, windier and much colder! However, the 'euphoric high' was worth it. It was like medicine healing the mind.[caption id="attachment_4988" align="aligncenter"…

11Feb 2016 by Ronny Allan 12 Comments

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

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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 common conditions can perhaps be more difficult to satisfy. A 'generalist' doctor (i.e. a GP or PCP) is unlikely to be very knowledgeable about every single condition. Even at the…

02Feb 2016 by Ronny Allan 21 Comments

Metastatic Neuroendocrine Tumours – Incurable but treatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Metastatic Neuroendocrine Tumours - incurable is not untreatable.When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer". Fortunately, my wife Chris heard it all and I was refocused. "OK Doc - let's go" I said. Always take someone with you to take notes…

28Jan 2016 by Ronny Allan 4 Comments

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

Treatment

[caption id="attachment_4852" align="alignleft" width="301"] Image with permission from Dr Sam Hare (www.lungdiagnosis.com)[/caption] 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 for those who have localised tumours less than 3cm and can't for whatever reason have surgery. I've checked with…

26Jan 2016 by Ronny Allan 39 Comments

Ignore this post about Neuroendocrine Cancer

Awareness

Ignore this post about Neuroendocrine Cancer? Actually, you must share it widely, people out there will have this disease and need a diagnosis. When I was diagnosed, I wasn't feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me, and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the 'long game' and will sometimes take years before it's finally discovered. It is very very very sneaky.Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones, bung you up with fibrosis, and get into your…

15Jan 2016 by Ronny Allan 10 Comments

Alcohol – the NET Effect

Living with Neuroendocrine Cancer, The NET Effect Series

Opinion.Social Media is currently full of 'Dry January' articles and of course many charities will benefit as people will be motivated if they are abstaining from alcohol for a good cause. Nothing wrong with that and no doubt some individuals will also see it as a way to cut down or at least lessen the effects of a very wet December!I've never been a big drinker but I do like the odd beer now and then. When I was diagnosed with metastatic Neuroendocrine Tumours (NETs), I hadn't really thought much about how this might affect my body. It wasn't until I studied a bit more about my disease and the consequences of my treatment, that I decided I would cut right down. This turned out to be a pretty drastic cut as I can count…

10Jan 2016 by Ronny Allan 5 Comments

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

Treatment

[caption id="attachment_8939" align="aligncenter" width="500"] Click this picture to see how VDAs work[/caption] {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 symptoms, rash, thrombocytopenia) and one patient was unable to complete treatment due to pneumonitis. All evaluable patients except…

01Jan 2016 by Ronny Allan No Comments

NET Cancer Blog – 2015 in review

General

The WordPress.com stats team have prepared a 2015 annual report for my blog. Special thanks to those who got a mention! Why not review my posts which received a 2015 Mention in Despatches ? Here's an excerpt: Madison Square Garden can seat 20,000 people for a concert. This blog was viewed about 62,000 times in 2015. If it were a concert at Madison Square Garden, it would take about 3 sold-out performances for that many people to see it. Click here to see the complete report.

29Dec 2015 by Ronny Allan 2 Comments

Neuroendocrine Cancer – a Doctor’s experience

General

[caption id="attachment_4617" align="alignleft" width="225"] Dr Michael Richardson - NET Cancer Patient[/caption] 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 all know, Cancer knows no boundaries and even Doctors can succumb to his disease. Despite this, I was still surprised to…

15Dec 2015 by Ronny Allan 7 Comments

Not all cancers are black, white, blue, pink – some are very grey

Awareness

OPINION Over the last few years, I've seen quite a few posts entitled "Not all Cancer is pink". I suspect it's a reference to the ubiquitous publicity that many women's cancer-related advocates, bloggers and organisations attract. Although, whether this is publicity that reflects reality or actually works, is another thing Those who use this phrase are perhaps concerned there is an imbalance and inherent unfairness in the distribution of support and are frustrated that their own cancer does not fare as well publicly. I share that frustration; however, I take my hat off to the battalions of advocates, bloggers and organisations who work very hard for breast and the various gynaecological cancers whether they push pink or not - and for the record, they don't all push or even agree…

09Dec 2015 by Ronny Allan 22 Comments

Neuroendocrine Cancer: My experience with Lanreotide (Somatuline Autogel/Depot)

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

On 9th December 2021, I celebrated 11 years of Lanreotide - click here to read about that.My Lanreotide ExperienceWhen I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as Somatuline Autogel and elsewhere as Somatuline Depot). Technically this is a hormone therapy (it's not chemo).Somatostatin Analogues (Octreotide/Lanreotide) are mainstay treatments for many Neuroendocrine Cancer patients and their introduction is a very significant factor in the improvement of both prognostic outcomes and quality of life. Both drugs are designed to control Carcinoid Syndrome (but can be used selectively in other NET syndromes) and both have anti-tumour effects. Check out…

01Dec 2015 by Ronny Allan 6 Comments

My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!

Awareness, Inspiration, Living with Neuroendocrine Cancer

BREAKING NEWS I recently blogged about a well-known BBC political reporter who has Neuroendocrine Cancer with a Lung Primary. However, in the usual media 'double speak' which can sometimes pervade the coverage of such events, he is said to have Lung Cancer. As I said in that article, sometimes with Neuroendocrine Cancer - the devil is in the detail and you just need to dig to find it. Annoying, we shouldn't need to dig as he doesn't have Lung Cancer. I wrote about this anatomical issue here. This is exactly what happened to Steve Jobs and Aretha Franklin.No sooner had I published the Nick Robinson article, I was alerted to the broadcasting of a film about rock star Wilko Johnson who has the most amazing story to tell. Wilko is…

24Nov 2015 by Ronny Allan 1 Comment

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 2)

Treatment

The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce (on the left on the picture below), I tolerated it well. My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1. If you've not read it yet, please click on this link before reading any further.By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed was the urine catheter. It doubled my speed down the hospital corridor during my daily exercises. It was also so much easier to get to the toilet, a much-frequented area at the time 😊Surprisingly,…

17Nov 2015 by Ronny Allan 3 Comments

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)

Survivorship, Treatment

This is a personal story but a more technical description of Small Intestine surgery for a NET can be found by clicking here. This is not normal bowel surgery. Often the decision to cut or not to cut is a tough one. My own experience 8th - 26th November 2010Memories of my 18-day stay in the hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days when morphine was in control. For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease. In fact, I now know from my own research that NETs are one…

16Nov 2015 by Ronny Allan 7 Comments

Neuroendocrine Cancer – the devil is in the detail

General

Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day.Like a lot of people, Nick's life changed when he was diagnosed with Cancer in Feb 2015. A self-confessed workaholic, he is now hoping to live a more balanced life after surviving lung cancer according to an article in the Sunday Times this weekend.He assumes the post vacated by James Naughtie, an extremely hard act to follow - a man who would frequently sink his teeth into a politician's leg and not let go until he got an answer - or at…

06Nov 2015 by Ronny Allan 8 Comments

Neuroendocrine Cancer – a difficult jigsaw

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

A couple of years ago, I received a request from a reader asking if I would write an article about all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn't associated with NETs.Although I chuckled and raised eyebrows at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task. I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities. After it started to look like it might be bigger than the Empire State Building, I came to the conclusion that it's an almost impossible task for a wee Scottish guy with…

27Oct 2015 by Ronny Allan 25 Comments

Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes)

Patient Advocacy

One of the most discussed and sometimes confusing subjects on forums is the staging and grading of Neuroendocrine Neoplasms (NENs). Mixing them up is a common error and so it's important to understand the difference despite the apparent complexity.Stage vs GradeIn the most basic of terms, stage is the spread or extent of cancer and grade is the aggressiveness of cancer. They are totally different things and an understanding of both is important as they are critical to predicting outcomes (to a certain extent) and guiding therapy. There is no correlation between the two, you can have the lowest grade with the highest stage (actually very common with NETs). Remember S for Stage (Spread), G for Grade (Growing fast or slow)The stage is essentially worked out via scans and biopsy,…

22Oct 2015 by Ronny Allan 7 Comments

Your Money or Your Life

Inspiration, Survivorship, Treatment

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 her and her campaign to gain access to new drugs. I had chatted with Danielle online about some of the story below and I hope I've interpreted it correctly. RIP…

19Oct 2015 by Ronny Allan 28 Comments

Scanxiety – I just don’t get it!

Inspiration, Survivorship

OPINIONThe internet is full of blogs and articles about a subject which is described as 'scanxiety' - the joining of the words 'scan' and 'anxiety'. I also noted some authors using the words 'scanxiety' and 'anxiety' interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names - at the end of the day, it's just anxiety regardless of whether it is waiting on the results of a biopsy, blood test, urine test, or anything else related to an illness. No-one goes around saying 'blood-testxiety' or 'biopsyxiety'. Why just scans?‘Scanxiety’ - I just don't get it ......or more accurately I just don't get overly anxious about having a scan…

15Oct 2015 by Ronny Allan 17 Comments

Not all Cancer is simple

General

[caption id="attachment_4135" align="alignleft" width="670"] Not all Cancer is simple[/caption] 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 other conditions often with debilitating symptoms. Once diagnosed, surgery (if it's possible) is just one of a number of treatment options…

08Oct 2015 by Ronny Allan 4 Comments

Other people get cancer, not me

Inspiration, Treatment

Denial I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told.I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp speed'.So why was I admitted to hospital during the diagnostic phase? Because I was stupid. In fact I was double-stupid. Firstly, despite having had to undergo a liver biopsy and…

05Oct 2015 by Ronny Allan 7 Comments

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

BackgroundNeuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some. Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, many diagnoses of NET can be extremely challenging. Even for an experienced doctor, it can be a difficult jigsaw!Most types of NET can have associated 'syndrome' i.e. the tumours are 'functional' and this is normally (but not always)…

30Sep 2015 by Ronny Allan 15 Comments

Opinion: Let’s attack Cancer metaphors

General

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email In the past 24 months, I've read dozens of articles on the subject of cancer metaphors and in particular their use in describing cancer experiences with the words 'fight', 'battle' and other 'military' sounding terms. The authors say that perhaps this is not the best language to use. One author used the term 'violence' to describe these type of metaphors. A ridiculous misrepresentation of the metaphor in my opinion.Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use. I don't like Cancer - it attacked me, it attacked my family, it attacked others I know, it has killed people I know....... it has killed…

18Sep 2015 by Ronny Allan 32 Comments

Opinion: Neuroendocrine Cancer Awareness – let’s move into the 21st century

Awareness

OPINIONThe build up to (so called) NET Cancer Day has begun and I can hear hoofbeats becoming louder every day. Is it a horse, is it a zebra etc etc. However, is this aged equine medical adage still applicable as an awareness tool for Neuroendocrine Cancer or should we be looking for something which is more impactful, up to date, more compelling, more likely be taken seriously and attract new audiences? p.s. even our day has a ridiculous name - "NET Cancer" decodes to "Neuroendocrine Tumour Cancer" which is quite ludicrous not only because of the grammar but also because it precludes a whole bunch of people from the Neuroendocrine Carcinoma area of the disease. The term World Neuroendocrine Cancer Day is so much betterFor those unaware, the term 'Zebra'…

07Sep 2015 by Ronny Allan 11 Comments

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

Treatment

[caption id="attachment_3922" align="aligncenter" width="425"] cost cutting vs life cutting?[/caption] 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 the earlier decision on Everolimus (Afinitor) in April . In fact, the recent cuts to the CDF were described in the…

04Sep 2015 by Ronny Allan 2 Comments

Screw that diagnosis and get on with it!

General

[caption id="attachment_3902" align="alignleft" width="300"] Screw that diagnosis and get on with it![/caption] 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 get in the way and can get bumpy - cancer, being one of them (and a now, 16yo…

27Aug 2015 by Ronny Allan 22 Comments

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Diet and Nutrition

Nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients and nutrition and gut health can become more important issues. It is also a key factor in maintaining a decent quality of life and for most countries without adequate NET Specialist Dietitian support, it remains an unmet need. In this article, I'm discussing the use of probiotics to combat the potential issue of small intestine bacterial overgrowth (SIBO) in Neuroendocrine Tumours. When I first indicated this nutrition series was under construction, a few people got quite excited anticipating me to produce advice on what to eat. However, that was never my intention. What people should or should not eat is such a varied problem (or solution?) and that anything I said would only really be of help to those…

18Aug 2015 by Ronny Allan 35 Comments

Neuroendocrine…..the little suckers get everywhere!

Awareness

One 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 of Macmillan's most retweeted posts over that period. The Macmillan Facebook post was also very popular and still rising with around 500 likes and around 40 shares so far. There are some great comments on…