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

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

Clinical Trials, Patient Advocacy, Survivorship, Treatment
Background.  For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors.  There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com) Episode 2 - Neuroendocrine Tumor Pathogenesis and Molecular Testing Expert insight on the pathogenesis of neuroendocrine tumors and the best use of molecular testing to inform treatment decisions.…
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Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Cancer-related fatigue (CRF) – Neuroendocrine Cancer

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
In my patient support group of 6000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers.  I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day.  In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for quite a while leading up to the diagnosis.  That said, I gradually got back into old ways after diagnosis and pretty much continued to put my tiredness down to the same…
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Let’s Talk About NETs (#LetsTalkAboutNETs)

Let’s Talk About NETs (#LetsTalkAboutNETs)

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

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

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Treatment
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text.  This post will auto update as new blogs are published. thanks for reading and sharing!  Click here to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading.RonnyI’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’Sign up for my newsletters -  Click Here DisclaimerMy Diagnosis and Treatment…
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The 6 E’s

The 6 E’s

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

Early diagnosis of late stage cancer!

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION: What a strange title for a cancer blog post!   However, what a strange cancer I have.  Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor.  To cut a long story short, you can read about me here."The cancer has been growing for years"One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in most cases. I'm fairly certain my surgeon once said something similar.  Clearly doctors are 'guesstimating' so these…
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Neuroendocrine Cancer: The Perfect Storm

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed.  I'm one of the lucky ones, even though I still ended up with distant metastases.  It does feel odd to say that having distant metastasis is lucky! I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for many cancer patients. I also think I was lucky because I had instant access to Neuroendocrine Cancer specialists and got quick treatment,…
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“Please find something wrong with me”

“Please find something wrong with me”

Awareness, Patient Advocacy
I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer. When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again…
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Neuroendocrine Cancer: Double, Double Toil and Trouble

Neuroendocrine Cancer: Double, Double Toil and Trouble

Awareness
Double Neuroendocrine Cancer is a complex and difficult disease to diagnose, many people struggle with symptoms for some time before they are formally diagnosed.  Some continue to struggle after diagnosis. There are many facets that can confound a physician - at diagnosis and beyond. Double Toil If it's not enough just to have tumours growing inside your body, this cancer can also be uncannily quiet delaying diagnosis.  At the same time, the tumours can still be 'functional' and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma - also delaying diagnosis.   In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux,…
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The Other 5 E’s

The Other 5 E’s

Inspiration, Living with Neuroendocrine Cancer
Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E's, read about them here.I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say "I can't" than it is to say "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So this is the story of the my daytrip at the end of summer (and pretty much many days out). [caption id="attachment_14267" align="aligncenter" width="960"] Motivation is often difficult[/caption]ExerciseEverywhere you look, there are experts telling us that exercise is good…
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Neuroendocrine Cancer: No one gets it until they get it

Neuroendocrine Cancer: No one gets it until they get it

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', they have real difficultly understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions through to very aggressive versions similar to many dangerous adenocarcinomas.  Unlike…
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Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Survivorship
I have a lot of be thankful for[caption id="attachment_24013" align="aligncenter" width="1024"] I'm still here for starters![/caption] BUT......… here's a list of 10 things I'm NOT thankful to Neuroendocrine Cancer for!Thanks for growing inside me for years before making your vague announcementSorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY!No thanks for making a right mess inside my body!I mean, I look really good, I look really well, but you should see my INSIDESNo thanks for generating fibrosis throughout my mesentery and retroperitoneum!I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important!  Fortunately, I had a surgeon who had operated on many NET patients and has seen this issue…
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Diabetes – The NET Effect

Diabetes – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship
My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream. Bubbling behind the scenes and clamoring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes One of my followers entitled a post in my group with "The hits keep coming" in reference to encountering yet another problem in the journey with Neuroendocrine Cancer. I now know how she feels, this issue is a bit…
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Neuroendocrine Cancer: Diagnosing the Undiagnosed

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if left too long it can be life threatening - CLICK…
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Don’t be underactive with your Thyroid surveillance

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email From other posts, you'll be aware of the thyroid lesion (now 17x19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range.  On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement.  One month after taking these drugs, my thyroid blood levels are now normal for the first time in 4 years…
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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, 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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Ronny Allan – Top 6 posts of 2017

Ronny Allan – Top 6 posts of 2017

Awareness, Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email These are my top performing posts for 2017 - comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum. Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017 The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906 Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis…
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Neuroendocrine Cancer – surveillance and follow up

Neuroendocrine Cancer – surveillance and follow up

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Since 2010 I've had a lot of surveillance and testing. More than people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than me. It's not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, even age. In the first year or two after diagnosis, I seemed to be a continuous testing phase but that was mainly due to seeing so many different doctors for so many different issues. In reality I was seeing and being assessed by my…
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Neuroendocrine Cancer – normally slow but always sneaky

Neuroendocrine Cancer – normally slow but always sneaky

Awareness
Share to save a life There's a lot of scary diseases in this world but some of them are particularly spooky.  One such spooky disease is the lesser known type of cancer that infiltrated my body - Neuroendocrine Cancer (aka Neuroendocrine Tumors or NET for short).  Not only is it scary and spooky, but it's also cunning, devious, misleading, double-crossing, and it likes nothing better than to play tricks on you.  It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum and a host of other places. It can be fiendishly small to avoid being seen.  Once it's established in the primary location (....or locations), it will try to break out via your blood and lymphatic systems.  It…
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Opinion: Neuroendocrine Cancer – Can it be cured?

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION: "Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community held groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions. But the latest statistics (which are now quite old)…
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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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Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET   Thanks for reading Ronny I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan Disclaimer My Diagnosis and Treatment History Most Popular Posts Sign up for my twitter newsletter Read my Cure Magazine contributions Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life! Please Share this post Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email
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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
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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,…
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Lanreotide vs Octreotide

Lanreotide vs Octreotide

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved.  So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone overscretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors.  They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed. Somatostatin is actually a naturally occurring hormone produced by the hypothalamus and some other tissues such as the pancreas and the gastrointestinal tract. However, it…
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Neuroendocrine – don’t let it be a Crisis

Neuroendocrine – don’t let it be a Crisis

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment
Update 4th July 2021.  A study where perioperative octreotide (i.e. crisis protection) completely eliminated, resulted in neither increased rate nor duration compared with previous studies using octreotide. The study concluded as follows:"We conclude perioperative octreotide use may be safely stopped, owing to inefficacy, though the need for an effective medication is clear given continued higher rates of complications".This is a paid article, but the abstract is good enough for most of us. Sarah M. Wonn, Anna N. Ratzlaff, SuEllen J. Pommier, Belinda H. McCully, Rodney F. Pommier, A prospective study of carcinoid crisis with no perioperative octreotide,Surgery, 2021, ISSN 0039-6060, https://doi.org/10.1016/j.surg.2021.03.063.(https://www.sciencedirect.com/science/article/pii/S0039606021004529)Author's notes:  This is possibly a controversial conclusion in some circles and it's worth pointing out that so called 'carcinoid crisis' isn't going away, just the need for time consuming and…
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NET Syndromes – chicken or egg?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
We’ve all heard the age-old question about the chicken and the egg?  Scientists claimed to have 'cracked' the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken's ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it! On a similar subject, I'm often confused when someone says they have been diagnosed with 'Carcinoid Syndrome' and not one of associated 'Neuroendocrine Tumours'.  So which comes first?  I guess it's the way you look at it. In terms of presentation, the syndrome might look like it comes first, particularly in cases of metastatic/advanced disease or other complex scenarios.  Alternatively, a tumour…
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Palliative Care – it might just save your life

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example.  Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared as a death sentence is now an illness in which…
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Serotonin – the NET effect

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email [caption id="attachment_16272" align="aligncenter" width="640"] Credit background picture: 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]This is an opinion postBackgroundI'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…
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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…
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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
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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.…
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Neuroendocrine – what’s that?

Neuroendocrine – what’s that?

Awareness, Patient Advocacy
[caption id="attachment_3076" align="aligncenter" width="350"] You have what?[/caption] 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…
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Carcinoid vs Neuroendocrine

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION There'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 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 here Edit May 2020.  So what about other areas not included in GEPNETs above? Please note there are still loose ends in some of the blue books, particularly Pulmonary, Urinary and Female Reproductive Organs. Hopefully these blue books will be updated in…
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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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