Neuroendocrine Cancer – the diarrhea jigsaw

Neuroendocrine Cancer – the diarrhea jigsaw

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.There are other reasons that might be causing or contributing, including (but not limited to) endocrine problems such as hyperthryoidism, mastocytosis or Addison's disease (which may be secondary illnesses in those with NETs). It's also possible that 'non-sydromic' issues such as stress and diet are contributing. It could be caused by other things…
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Serotonin – the NET effect

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy
picture shows an actual serotonin receptor BackgroundI'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Cancer patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to give in response to a complex set of circumstances. It's difficult to get a definitive answer and the science behind the behaviour of our hormones isn't really 100% tied down - the human body is extremely complex.You may see serotonin referred to as a 'neurotransmitter', a 'chemical' and a 'hormone' - this…
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Neuroendocrine Cancer – not average, just mean

Neuroendocrine Cancer – not average, just mean

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene.Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of disease is a common term I see).Most NETs are not like that! Whilst it has a reputation for being a generally slow-growing type of tumour at the lower grades (but very…
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Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
reviewed and updated 12th Feb 2022Background.Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (I listed the other parts below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another.I like to focus on why such things might have an effect - patients can then experiment and see what works for them. Sometimes very few changes are required and settling on a diet that works for you is the optimum solution. p.s. Not everyone has…
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Somatostatin Receptors

Somatostatin Receptors

Awareness, Treatment
Don't understand Somatostatin Receptors? Join the club! I got my head around the term 'Somatostatin' and 'Somatostatin Analogues' some time ago but the term 'Somatostatin Receptor' (SSTR) is still a bit of a mystery. SSTRs do come up in conversation quite often and I'm fed up of nodding sagely hoping it will eventually become clear! On analysis it looks like a technical subject - and therefore a challenge.I've taken a logical approach working from 'Somatostatin' to 'Somatostatin Analogue' before commencing on the 'receptor' bit. It is intentionally brief and (hopefully) simplistic!SomatostatinIt's important to understand this hormone and then why your 'butt dart' is generically called a 'Somatostatin Analogue'.Some Neuroendocrine Tumours secrete hormones and peptides that cause distinct clinical syndromes, including but not limited to, carcinoid syndrome.Somatostatin is a naturally occurring…
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What you don’t know might kill you

What you don’t know might kill you

Awareness, Treatment
[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…
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Living with Cancer – Turning points

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…
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The 5 E’s (of Carcinoid Syndrome)

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. mainly serotonin secreting types but include tumours which are well differentiated found in the small intestine, appendiceal, rectal, lung, and one or two other less common places. There are many variations of this list, but this is my take! I suspect some of this also applies to…
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Neuroendocrine Cancer – my liver surgery

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

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® 4th April 2022 updateSERB is pleased to announce it has acquired the rights from Ipsen to commercialize Xermelo® (telotristat ethyl) in Europe and other countries outside the US and Japan.  Xermelo® will be commercially available from SERB outside the US and Japan starting in July 2022.   The announcement appears to infer that SERB are working with BTG Specialty Pharmaceuticals to complete this task. (SERB…
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Carcinoid – What’s in a name?

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…
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Alcohol – the NET Effect

Alcohol – the NET Effect

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

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 Experience When 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…
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Neuroendocrine Cancer – a difficult jigsaw

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…
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I bet my flush beats yours?

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment
Neuroendocrine 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…
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Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Diet and Nutrition
OPINION.  Nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients.  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?) that anything I said would only really be of help to those for whom it worked - ergo this area is not…
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The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

Awareness
One of the curious things about Neuroendocrine Cancer (NETs elsewhere in the text) is that it can very often exhibit one or more vague symptoms collectively known as a 'syndrome'.  Syndrome is an apt word to describe these complications as the most general meaning in medical terms is a group of symptoms that together are characteristic of a specific disorder or disease".  Having a syndrome can often be the difference between having a 'functional' condition or a non-functional' condition - see more below.This frequently makes Neuroendocrine Cancer very difficult to diagnose quickly.  It's a very devious disease.It's NOT all about Carcinoid Syndrome!Most people think of Carcinoid Syndrome when they discuss NETs. Anyone suggesting that all NET patients get carcinoid syndrome or that all symptoms of NETs are caused by carcinoid…
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‘Chinese Dumplings’ and Neuroendocrine Cancer

Treatment
One of my daily alerts brought up this very interesting article published in the Journal of Gastrointestinal Oncology last month (June 2015).  I personally found it fascinating. Moreover, it gave me some hope that specialists are out there looking for novel treatments to help with the difficult fight against Neuroendocrine Cancer.This is an article about something generally described as "Intra-operative Chemotherapy", i.e. the administration of chemo during surgery.  This isn't any old article - this is written by someone who is very well-known in Neuroendocrine Cancer circles - Dr. Yi-Zarn Wang.March 2022: Note Dr Wang has a new post.“I am now in Permian Basin-Odessa Midland Texas as the new Program Director of a new general surgery residency program. I have officially joined the faculty of Texas Tech University Health Sciences Center on…
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I’m still here

I’m still here

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I was diagnosed with metastatic Neuroendocrine Cancer - 26th July 2010.  Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions.  I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do.There are several types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will handle it their own way - and that's perfectly understandable.The 5-year milestone was significant, I…
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Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment
This is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that malabsorption issues can be caused by other reasons unrelated to NETs. Additionally, malabsorption and nutrient deficiency issues can form part of the presenting symptoms which eventually lead to a diagnosis of Neuroendocrine Cancer; e.g. in my own case,…
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Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Diet and Nutrition
Always speak to your specialist before taking vitamin and mineral supplementsFeaturing Tara WhyandDespite learning early on in my journey that nutrition was going to be a challenge, I sensed the initial focus of my treatment was on getting rid of as much tumour bulk as possible and then controlling (stabilising) the disease through monitoring and surveillance. Clearly I'm happy about that! However, it eventually became clear that the impact of this constant treatment/controlling, meant that some of the less obvious signs of nutrient deficiency were potentially being missed.This is one of the key reasons I believe there is a gap in specialist follow on support for Neuroendocrine Cancer patients - at least in the UK. As I said in my article 'I may be stable but I still need support', Neuroendocrine Cancer patients…
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Neuroendocrine Cancer Online Forums: frighteningly good or good at frightening?

Neuroendocrine Cancer Online Forums: frighteningly good or good at frightening?

Awareness, Patient Advocacy
OPINIONWhen I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'. I found it quite 'cliquey' and I should have listened to the initial advice of that fellow patient!  So I left it after the reigning clique found I didn't want to be part of their pity party.Joining forums/Online patient groupsIn 2013/14, I joined several large Facebook closed groups which function as forums. After 4 years, I felt more experienced and…
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Neuroendocrine Cancer – don’t break my heart!

Neuroendocrine Cancer – don’t break my heart!

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment
Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome.  Neuroendocrine Tumours secreting excess amounts of serotonin, can be accompanied by Carcinoid Syndrome which if not diagnosed and treated early enough, can lead to an additional complication known as Hedinger Syndrome (often known as Carcinoid Heart Disease (CHD)). However, very late diagnoses can present with CHD already in place.Excess serotonin, a hormone released by NETs into the bloodstream seems to be the prime and lead suspect for causing thick ‘plaques’ or fibrosis tissue within the heart muscle and damage to (mainly) the tricuspid and pulmonary valves on the right side of the heart which can become ‘tightly narrowed’ or ‘leaky’.  It's very similar to the reasons for mesenteric and peritoneal fibrosis…
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Please flush after use!

Please flush after use!

Awareness, Diet and Nutrition, Humour, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
In the past couple of years, I've read so many stories about the quite natural act of using a toilet (.....some more repeatable than others).  I think if there was a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours. I jest clearly but it's strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses. I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso - the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer.  "Please flush after use" - erm...yes sure but actually -…
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Neuroendocrine – what’s that?

Neuroendocrine – what’s that?

Awareness, Patient Advocacy
Neuroendocrine??? what's that! I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?".  Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again!Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most…
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The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship
But it works, I read it on the internet! “But it works… I read it on the internet!”You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media.Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer.  They also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks.  The vast…
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Carcinoid vs Neuroendocrine

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy
OPINIONThere's a constant debate regarding the validity of the term 'Carcinoid'.  I've posted about this a few times and as far as I know, the debate has been raging for some years.EDIT MARCH 2022.  The latest classification system for Lung Neuroendocrine Neoplasms (NEN) confirms the word "carcinoid" is now a choice - the WHO Lung Committee bottled it.  I made my choice some years ago, I hope others follow suit.  Read more about changes to Lung NEN by clicking here. EDIT APRIL 2020.  The latest classification system for Neuroendocrine Neoplasms confirms the word "carcinoid" no longer forms part of the terminology used in Digestive System tumours (effectively removing the term from GEP NETs) - read more - click hereEdit May 2020.  So, what about other areas not included in GEPNETs above? Please note there…
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Exercise is Medicine

General
  I suspect we all know exercise is good for us but it does sometimes take quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!).  I did write about this in 2014 (Exercise - it's a free prescription).  In fact, my blog  was actually created to document my return to fitness and good health 12 months ago! I was prompted to write this blog after discovering a piece of advice for NET Cancer patients, specifically those with carcinoid syndrome. The advice is one of those catchy 'single letter' lists called the "5 E's" of things to avoid - one of which is 'Exercise'.  Clearly 'Exercise' needs putting into some context as everybody needs…
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Things are not always how they seem

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, Survivorship
In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border.  It was a fantastic experience, and we met some really interesting people on our 6-day journey.  On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I was with Chris and other people were also present, so I kept quiet.  I later discovered this lady was autistic and I was, therefore, relieved I hadn't responded to her initial rudeness. However, it got me thinking about the number of times I had perhaps been too hasty to judge people in the past without thinking about what was going on inside their heads and bodies.Visible Illness can have awareness benefitsConversely in 2018, I was absolutely humbled when I met a…
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Surgery for NETs – Chop Chop

Surgery for NETs – Chop Chop

Treatment
At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other than some detail of the surgery, I didn't get too technical, I just wanted to generate a thankful and festive mood. However, a recent private message from a subscriber prompted me to study the current benefits of surgery for Neuroendocrine Tumours (NETs) in more detail just to ensure my understanding was still in line with best practice. …
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Lanreotide – Four more years

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide:  10 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 which makes 4 or 5 years ago look prehistoric. In 2012, Barack Obama's 'four more years' tweet was the biggest retweeted post ever up to that point after he thanked his 22 million…
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Surgery – the gift that keeps on giving

Survivorship, Treatment
As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking confers some survival advantage.  Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by removing or destroying disseminated tumour metastases'.  Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation.  I'm still alive and kicking and don't feel too…
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Chocolate – the NET effect

Chocolate – the NET effect

Diet and Nutrition, Humour
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I've always had a 'sweet tooth' and the softer the sweet the better - toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts, 'tablet' and macaroon bars (both from Scotland), are all on my list of favourites.  In terms of desserts, I love those too - ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn't complete without a biscuit (or three....). Don't get me wrong, I'm not stuffing my face with sweet stuff 24/7, however I do need my sugar 'fix' now and then. I'm not a large person, I'm small 'framed' and although I was starting…
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Neuroendocrine Cancer – not an exact Science

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study.  Different teaching methods? different teachers?  Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since being diagnosed with Neuroendocrine Cancer (NET Cancer).  Like many other NET Cancer patients, I feel I need to know a lot more than the average cancer patient.  For me, this can be attributed to a number of…
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Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

General
The papers and social media seem to be full of awareness and early diagnosis articles this month.  This coincided with world NET Cancer Day on 10 Nov and world Pancreatic Cancer day on 13 Nov.  Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types.  These issues also made it to the conventional media outlets of newspapers, radio and television.  Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of Pancreatic Cancer and I was struck by the similarities with NET Cancer. However what really caught my ear was Ali saying how important it was for individuals to think whether the symptoms they…
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I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment
1 year after 2 x surgery 5 years after 3 surgeries 10 years after diagnosis 11 years after first surgery Macmillan Cancer Support featured this post CKN featured this post It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body.  I can still remember the feeling today; it was like I was pinned to the bed and I was completely…
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Detective Doctors

Detective Doctors

Awareness
Share this post please 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.  Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays.  In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! In some cases, it can be a little bit noisy. For example, some of the most common misdiagnoses appears to be Irritable Bowel Syndrome (IBS), asthma, or menopause.  Patients complain of abdominal pain, wheezing, shortness of breath, diarrhea, flushing, palpitations and a whole host of other minor issues.  There are…
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Neuroendocrine Cancer – Horrible Hormones

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy
Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases.  In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos!Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you suddenly appreciate how important they are.  Hormones are involved in many conditions, not just an issue with Neuroendocrine Tumours (NETs) but the presence of over-secreting hormones (often called peptides throughout) is useful to aid a diagnosis, albeit…
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Living with an incurable cancer – does mind over matter help?

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going.  That suddenly made it more difficult! In my early blogs, there were several 'no go areas' which were either too complex or potentially controversial.  I didn't really have much time to think them through properly at that point in time. However, I've since dabbled in some of these areas to test the waters.   I'm not a healthcare…
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If your Doctors don’t suspect something, they won’t detect anything!

If your Doctors don’t suspect something, they won’t detect anything!

Awareness, Patient Advocacy
Opinion:One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default scenario as no intervention was possible without a symptomatic patient.Neuroendocrine Neoplasms - Under-diagnosed or Under-reported?Like many other Cancers, Neuroendocrine Neoplasms (NEN) is one of a number of 'difficult to diagnose'…
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Met an old friend today; his name is Gym

General
I think I first met Gym at school in the sixties - we normally met on a weekly basis. We were reacquainted when I joined the army and hooked up more frequently! It was there I met some of Gym's friends, known as PTIs (Physical Training Instructors). Their opening line was normally "Ten times round my large bronze chest...... GO! " and then we would proceed with the 'beasting'.  I suspect I might now be prodded by the PTIs on my facebook page - there are one or two out there :-) I've always been a fairly fit guy but over time my fitness had faded.  I'm to blame entirely for this but I suppose it hasn't been helped by a diagnosis of metastatic Neuroendocrine Cancer.  However, I'm now turning this negative…
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I’ve just been nuked!

General
When I was in the military, I was given basic training in how to deal with the threat of Nuclear, Biological and Chemical Warfare (known then as NBC).   However, there was a focus on the chemical side as that was classed as the most defendable of the 3 and probably the most likely scenario (but that's only my opinion!).  I think the training for nuclear attack consisted of the following advice: 'put your head between your legs and kiss your arse goodbye' :-)  Some 13 years after departing that wonderful organisation, I'm now allowing radioactivity to be injected into my body! At my age I'm no longer physically able to put my head between my legs but in any case, I need not be concerned about this controlled 'contamination'…
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My stomach sometimes cramps my style

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship
When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!).  In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'.  Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......).As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain.  One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur.  If you've had abdominal surgery, you might be having to deal with issue. Many Neuroendocrine Tumour (NET)…
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