Proton Pump Inhibitors – the NET Effect

Proton Pump Inhibitors – the NET Effect

Survivorship, Technical NETs, Treatment
Proton pump inhibitors (PPIs) reduce the production of acid by blocking the enzyme in the wall of the stomach that produces acid. Acid is necessary for the formation of most ulcers in the oesophagus, stomach, and duodenum, and the reduction of acid with PPIs prevents ulcers and allows any ulcers that exist in the oesophagus, stomach, and duodenum to heal. PPIs are prescribed to treat acid related conditions such as: Esophageal duodenal and stomach ulcers NSAID-associated ulcer Ulcers Gastroesophageal reflux disease (GERD) Zollinger-Ellison Syndrome - ZES (note this is a syndrome associated with a functioning duodenal or pancreatic NET known as a Gastrinoma) They also are used in combination with antibiotics for eradicating Helicobacter pylori, a bacterium that together with acid causes ulcers of the stomach and duodenum for eradicating…
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Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
Diarrhea is a huge subject for NET patients, whether it's caused by the tumor itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life.  Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer - the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate.  I don't normally write articles on over the counter commercial products but this one is an exception given that it has been classed as a medical food since 2012 and is also used to rehydrate patients undergoing radiotherapy and chemotherapy for cancer (so not just for NETs).…
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I now take food with my medicine!

I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Technical NETs
If you want to strike up a friendly conversion with a Brit, ask him or her about the weather - we're really famous for our weather conversations and they normally focus on rain or clouds!  However, despite the famous British 'reserve' and 'stiff upper lip', they also frequently talk about being 'under the weather', a phrase meaning slightly unwell or in low spirits. I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests.  Here, conversations bypass the weather and focus on being under the weather! I thought I was a regular when I started to recognise people in the queue (line!) and their pill conversations.  Statements such as "Yes, I just started a 'blue chap' "…
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Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
After 7 years of avoiding pancreatic enzyme replacement therapy (PERT), I finally asked for some on a trial basis at the end of 2017.  To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs).  I've always known I've had some digestive issues related to malabsorption. However, I'm not losing weight - this has been stable for some years (but see below).  Plus my key vitamin levels (B12 and D) are in range.  However, I had been struggling with a lot of bloating issues, thus the trial.  You know me, I like to research and analyse such things! I've actually written about a lot of these issues in my Nutrition series ..... so this is now 'Article Number…
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Living with Neuroendocrine Cancer – the 7 Year Itch

Living with Neuroendocrine Cancer – the 7 Year Itch

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs, Treatment
I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery.  It had taken 12 days for me to feel strong enough to venture onto social media with a simple message "I'm feeling perkier".  For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed.  I guess I met some of these descriptors most of the time! I had gotten through the worst and the light at the end of the tunnel was now a faint glimmer. I've recently had a ton of '7…
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Weight – the NET Effect

Weight – the NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment
[caption id="attachment_11145" align="aligncenter" width="500"] Weight - The NET Effect[/caption] Firstly, let me say that I have no intention of advising you how to lose or gain weight!  Rather, I'd like to discuss what factors might be involved and why people with NETs might lose or gain weight either at diagnosis or after treatment.  Clearly I can talk freely about my own experience and associated weight issues. If nothing else, it might help some in thinking about what is causing their own weight issues. I once wrote a patient story for an organisation and the headline was "Did you mean to lose weight".  Those were actually the words a nurse said to me after I nonchalantly told her I thought I'd lost some weight (....about half a stone).  I answered the…
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The shock effect never wears off

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment
Patient stories are key to any awareness campaign.  Nothing like a human being standing up and letting you know about their experience.  Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the 'kick ass' type stories, some are just thankful, some are reflective - all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like "I'm still here", although I can veer left and right when the mood takes me! Because of my social media footprint, I get a lot of private messages from people across the globe. Many are from people who have no wish to go public and that's fine. Many are from…
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NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest:   The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.   The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.   The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding…
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NETwork with Ronny © – Community Newsletter AUGUST 2017

NETwork with Ronny © – Community Newsletter AUGUST 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
[caption id="attachment_10710" align="aligncenter" width="500"] background scene from my Instagram account - to see more check out the newsletter. Photo credit to Nick Lucas[/caption] Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is August 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here. However, in UK, there is a threat that PRRT won't be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK's drug approver NICE's negative recommendation. …
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NETwork with Ronny © – Community Newsletter JULY 2017

NETwork with Ronny © – Community Newsletter JULY 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is July 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!).  July 26th was the 'Cancerversary' of my diagnosis - I'm still here after 7 years and I'm apparently a veritable newbie!  There's some great comments on my 'I'm Still Here' post - check them out ... 'click here' NET News The following news items may be of interest: Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here. PRRT takes a step forward to being approved in USA.  Click here. Ipsen launches the German version of 'Living with NETs' website.  Click here. What's happening on my Blog Site?   As per above, a quiet month.  Due to the vagaries of…
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Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and a period beyond, people tend to feel emotions of shock, denial, anger and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then. As things progressed in the weeks after 'D-Day', I started to work out the sort of things to ask but even then it was limited. I had been referred to an experienced NET team so I felt confident they would do whatever…
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Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  OPINION. There's a lot of inaccurate and out of date information out there.  Some is just a lack of understanding, often with a combination of patient forum myth spreading. Some can only be described as propaganda. Myth 1:  All Neuroendocrine Tumours are benign Not true.  By any scientific definition, the word 'tumour' means 'an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)'.  Sure, some NETs will be benign.  However, The World Health Organisation (WHO) 2010 classification for digestive system is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential.  This has been…
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In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
OPINION.  Date of Article March 2017.  In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including  immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new 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, regardless of where they live, need access to the best diagnostics and treatments for them; and at the requisite time. This alone is…
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Road ahead closed – Bowel Obstructions

Road ahead closed – Bowel Obstructions

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
OK - we've gone through diagnosis, we've gone through treatment and now we need to live with the consequences of cancer and it's treatment.  Not a day goes by when I don't feel some twinge or some minor pain and I think 'what was that?'.  Fortunately, many things can just be day-to-day niggles. It's the cancer .... easy to say, sometimes not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel obstruction is quite a scary thought (I suspect this is also an issue for other cancer types).  In fact, even before diagnosis, a bowel obstruction rears its head as it can be how the condition is diagnosed in the first place, i.e. pain leads to more pain and that can sometimes result in…
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Happy Thanksgiving

Happy Thanksgiving

Diet and Nutrition, Living with Neuroendocrine Cancer, Technical NETs
Just a note to say Happy Thanksgiving to my friends in USA or who may be celebrating it elsewhere.  I am so thankful for the support I get from the US who make up the biggest proportion of subscribers to my blog and associated Facebook page.  So I'm thinking of y'all today! Now ........ I hate to stereotype but I guess a lot of you might be eating turkey today?  No Thanksgiving is complete without a turkey at the table (... so I'm told!).  And also a nap right after it’s eaten..... right? As you know I like to analyse such things ...... Apparently, the meat has a bad reputation for making eaters sleepy, but is there really science to back that up?   My google alerts feed increases around this time of…
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Did you hear the one about the constipated NET patient?

Did you hear the one about the constipated NET patient?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
[caption id="attachment_7646" align="aligncenter" width="591"] did you hear the one about the constipated NET Patient?[/caption] In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke.   However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments.  Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to find myself with feelings of constipation from around 4-5 years after my treatment and I set…
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Neuroendocrine Cancer – were you irritated by your misdiagnosis?

Neuroendocrine Cancer – were you irritated by your misdiagnosis?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (Irritable Bowel Syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future?  I just spent a few hours doing an online training course on IBS and I want to pass on some stuff I found to be very useful. I have never been diagnosed with IBS but having researched the issue through some training, I can understand why it might be in the thoughts of a general practitioner for many scenarios.  Much of my research was focussed on the British Society of Gastroenterology (BSG) who sponsored the online course I completed which also…
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Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

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

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment
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 more. I've mentioned Steve Jobs a few times previously, mainly in my blog The Human Anatomy of Neuroendocrine Cancer. I wrote that blog when I was frustrated about the constant…
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Neuroendocrine Cancer – the diarrhea jigsaw

Neuroendocrine Cancer – the diarrhea jigsaw

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, 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 such as Irritable Bowel…
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Serotonin – the NET effect

Serotonin – the NET effect

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Technical NETs
[caption id="attachment_14036" align="aligncenter" width="750"] A team of researchers from Case Western Reserve University School of Medicine have used high-powered microscopes for the first time to view serotonin activating its receptor[/caption] Background I'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. "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. You may see serotonin referred to as a 'neurotransmitter', a 'chemical' and a 'hormone' - this is complex…
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Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought?

Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought?

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
  Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer.  In the previous parts of this series I focussed on the following: Article 1 - Vitamin and Mineral Challenges.   This was co-authored by Tara Whyand, UK's most experienced NET Specialist Dietician.  This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario. Article 2 - Malabsorption.  Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand. Article 3 - 'Gut Health'.  This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as…
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Let’s talk about living with NETs

Let’s talk about living with NETs

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
[caption id="attachment_4893" align="aligncenter" width="500"] Graphic courtesy of Ellie McDowell[/caption] There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". 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.  I can see a list of search terms for hits on my blog site (I don't know who searched just what was searched). Would you believe this also appears from time to time?  I just hope they found this post! I don't tend…
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Alcohol – the NET Effect

Alcohol – the NET Effect

Diet and Nutrition, 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 the…
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My Neuroendocrine Cancer Surgery – a patient experience (part 2)

My Neuroendocrine Cancer Surgery – a patient experience (part 2)

Living with Neuroendocrine Cancer, 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, the…
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My Neuroendocrine Cancer Surgery – patient experience (part 1)

My Neuroendocrine Cancer Surgery – patient experience (part 1)

Survivorship, Treatment
8th - 26th November 2010 Memories of my 18 day stay in 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 where the 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 is one of a small number of cancers for which surgical debulking can in many cases confer some survival advantage in a metastatic scenario. However, the nature of Neuroendocrine Cancer means that treatment and surveillance will need to continue for many patients. Prior to being…
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Neuroendocrine Cancer – a difficult jigsaw

Neuroendocrine Cancer – a difficult jigsaw

Awareness, 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 less common disease :-)  I also started…
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I bet my flush beats yours?

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs, Treatment
[caption id="attachment_7911" align="aligncenter" width="500"] There are different types of flush![/caption] Neuroendocrine Cancers 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 which have similar symptoms.  Textbook diagnostics just don't make sense, sometimes even when the doctor suspects Neuroendocrine Cancer 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 Neuroendocrine Cancer can be extremely challenging.  Even for an experienced doctor, it can be a difficult jigsaw! Most types of Neuroendocrine Cancer can be accompanied by a 'syndrome' i.e. the tumours are 'functional' and…
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Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Diet and Nutrition, Living with Neuroendocrine Cancer, Technical NETs
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 - this area is…
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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, Technical NETs, 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, Living with Neuroendocrine Cancer
Always speak to your specialist before taking vitamin and mineral supplements Featuring Tara Whyand. Despite 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…
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I may be stable (..ish) but I still need support and surveillance

I may be stable (..ish) but I still need support and surveillance

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal.  The surveillance must continue in case of a recurrence. It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing the cancer hasn't changed over time. One of the disadvantages of 'incurable but treatable' is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in…
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Chocolate – the NET effect

Chocolate – the NET effect

Diet and Nutrition, Humour, Living with Neuroendocrine Cancer
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 and macaroon 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 to look a bit 'chubby' early 2010, my Neuroendocrine Cancer diagnosis and subsequent treatment took care of that. Coping with cancer is hard and it can lead to certain lifestyle…
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Neuroendocrine Cancer – Hormones

Neuroendocrine Cancer – Hormones

Awareness, Living with Neuroendocrine Cancer, Technical NETs
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 ........like a lot of other things in life I suppose! The presence of over-secreting hormones (often called peptides throughout) is useful to aid diagnosis albeit it often (but not always) means the tumours have metastasized. It's also a frequent indication that the person has an associated NET syndrome. This is a really complex area and to understand the hormone problems associated with Neuroendocrine Cancer, you need to have a basic knowledge of the endocrine and neuroendocrine systems.  I've no intention…
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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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