Flushing – Ronny Allan – Living with Neuroendocrine Cancer

04Aug 2021 by Ronny Allan 8 Comments

Let’s Talk About NETs (#LetsTalkAboutNETs)

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

Caption: Talking to Ipsen 2016 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. I will keep adding them so they're all in one place. Published talks CNETS Canada - 16th January 2022 I was invited by their President Jackie Herman to talk to patients and caregivers via a CNETS Canada-sponsored webinar. The topic was "patient perspective and journey". Have a listen by clicking on the picture below (or here). Click on the picture to play Ipsen Pharma - 2016…

13Jul 2021 by Ronny Allan No Comments

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! Scroll, point, click, read, share! Click here and answer all questions 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. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…

17Jun 2021 by Ronny Allan 1 Comment

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, Survivorship

An opinion post 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 (so called) 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!…

19Jul 2020 by Ronny Allan No Comments

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine Cancer

I see so many questions and comments in my private group about 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the list of known symptoms directly attributed to any of the syndromes except for the group of catecholamine secreting tumours known as Pheochromocytoma and ParagangliomaI decided to extend it to diet because diet can…

27Mar 2019 by Ronny Allan 6 Comments

Rosacea – the NET Effect

Awareness, Patient Advocacy

Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today. It normally starts with a stinging feeling, an indication I'm about to experience some sort of inflammation. What eventually happens is something which looks like a 'whitehead' which I now know to be a 'pustule'. Sometimes there are multiples, and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering, but they tend to leave reddish marks which eventually fade. Very infrequently, these pustules would appear on my chin. My nose is slightly discoloured and more reddish than the rest of my face since the issue started. Shortly after I started experiencing this issue, a doctor diagnosed me…

07Sep 2018 by Ronny Allan 3 Comments

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Patient Advocacy

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 HERE to find out why.The road to a diagnosis of Neuroendocrine Cancer is often not straight or easy to navigate.…

08Jul 2018 by Ronny Allan 8 Comments

“What are you doing this afternoon”

Awareness

"Don't ignore symptoms because you're too busy at work". I had what was really an incidental diagnosis in 2010 that took around 2 months to be diagnosed from me saying "I think I've lost some weight". This is actually crazy because I had metastatic (Stage IV) cancer and how can cancer get to that stage without any hints? Well, often that's what happens with Neuroendocrine Cancer - it's a sneaky little disease. I didn't hear it coming but there were a few clues. I'm putting that down to my own intransigence, doctors need you to tell them about your issues. However, in 2022, I'm still here. https://youtu.be/n17KUCiFaqU?t=7On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried…

12Dec 2017 by Ronny Allan 3 Comments

Update: Management of Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Treatment

This is an excellent and positive video based overview of where we are with the Management of NETs. This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference. This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too! I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains the different facets of NETs and how NETs are classified and categorised in a general way - not seen it done this way before. Slightly out of date as…

19May 2017 by Ronny Allan 5 Comments

ASCO 2017 – Let’s talk about NETs #ASCO17

Clinical Trials

ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 'extracts' submitted for review and display. This is fairly complex stuff but much of it will be familiar to many. I've filtered and extracted all the Neuroendocrine stuff into one list providing you with an easy to peruse table of contents, complete with relevant linkages if you need to read more. For many the extract title and conclusion will be sufficiently educational or at least…

28Dec 2016 by Ronny Allan 28 Comments

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Treatment

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 can only handle the normal release of hormones. When NET syndromes occur, the naturally occurring somatostatin is unable to cope. The…

28Sep 2016 by Ronny Allan 23 Comments

Neuroendocrine Cancer – tumour markers and hormone levels

Patient Advocacy

BackgroundI think most people have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. In a nutshell, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a physician's reaction to symptom presentation or maintenance/surveillance of an existing diagnosed condition. Sometimes, abnormal results will lead to more specialist tests.In cancer, these tests are frequently called 'markers'. Most tumour markers are made by normal cells as well as by cancer cells; however, they are produced at much higher levels in cancerous conditions. These substances can be found in the blood, urine, stool, tumour tissue,…

15Sep 2016 by Ronny Allan 19 Comments

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…

08Sep 2016 by Ronny Allan 20 Comments

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…

25May 2016 by Ronny Allan 5 Comments

The 5 E’s (of Carcinoid Syndrome)

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

Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid syndrome" in this article, I only mean the syndrome that is caused by what was once called "Carcinoid Tumors", i.e. 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…

04Apr 2016 by Ronny Allan 3 Comments

Somatostatin Analogues and delivery methods in the pipeline

Awareness, Clinical Trials, Living with Neuroendocrine Cancer

This is my live blog post covering new developments in the area of new Somatostatin Analogues and new delivery systems. Abstract As most of you will be aware, there are currently two main types of Somatostatin Analogues (SSA) in use for the treatment of mainstream Neuroendocrine Tumours (NETs) - Octreotide and Lanreotide. You can click on the links for information on both of these well-known NET treatments. This post will focus on the not so well known and anything in the pipeline including different delivery systems. Those who have read the Octreotide/ Lanreotide patient leaflets will know those SSAs are also used in the treatment of a condition known as Acromegaly. You can see why the drug is used for both as they control the release of excess secretions of…

26Jan 2016 by Ronny Allan 39 Comments

Ignore this post about Neuroendocrine Cancer

Awareness

When I was diagnosed, I wasn't feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the 'long game' and will sometimes take years before it's finally discovered. It is very very very sneaky.Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones, bung you up with fibrosis, and get into your heart where it can cause the most damage. It will also try to get into your head, metaphorically speaking - however, it will also…

09Dec 2015 by Ronny Allan 22 Comments

Lanreotide – it’s calling the shots!

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

On 9th December 2020, I celebrated 10 years of Lanreotide - click here to read about that.My Lanreotide ExperienceWhen I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as Somatuline Autogel and elsewhere as Somatuline Depot). Technically this is a hormone therapy (it's not chemo).Somatostatin Analogues (Octreotide/Lanreotide) are mainstay treatments for many Neuroendocrine Cancer patients and their introduction is a very significant factor in the improvement of both prognostic outcomes and quality of life. Both drugs are designed to control Carcinoid Syndrome (but can be used selectively in other NET syndromes) and both have anti-tumour effects. Check out…

05Oct 2015 by Ronny Allan 7 Comments

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 which have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly those are extreme cases and just like other complex diseases, many diagnoses of NET can be extremely challenging. Even for an experienced doctor, it can be a difficult jigsaw!Most types of NET can have associated 'syndrome' i.e. the tumours are 'functional' and this is normally (but not always)…

19May 2015 by Ronny Allan 5 Comments

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 -…

10Nov 2014 by Ronny Allan 10 Comments

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…

16Oct 2014 by Ronny Allan 14 Comments

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…

26Aug 2014 by Ronny Allan 3 Comments

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'…

12Jun 2014 by Ronny Allan No Comments

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)…