Living with Neuroendocrine Tumours – the 14 year itch
Following a diagnosis of metastatic small intestine NET in 2010, I wrote a blog in 2017 entitled "The 7 year itch". I thought I would re-release it having reached 14 years and almost 7 years since it was published. When I wrote it, I was inferring a link between Lanreotide and my ongoing leg itching. After some years, I also started to see correlations between itching and many other things including but not limited to the seasons of the year (i.e. it seemed to be worse in the winter). As another example, I also noticed itchy skin could be caused…
Hives (urticaria) The NET Effect
Background to why I created this blog post. For many years, I've read numerous comments and posts where people mention hives (full medical term urticaria). As far as I know, this is an issue that has never bothered me all of my life ...... until recently. I've never had any allergies other than certain cats and dogs (....I guess there might be a connection there). I'm currently taking an anti-histamine tablet each day until the issue resolves. My normal reaction to these changes is to research, so here is my research! The response in patient groups to questions about hives…
Serotonin – the NET effect
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%…
Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?
Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought? Reviewed and updated 23rd January 2024 Background 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 (listed 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. Often the the best diet…
I bet my flush beats yours?
Background 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, diagnoses of NET can be…
Neuroendocrine Cancer – Horrible Hormones
Updated and reviewed 20th March 2024 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…
Histamine – NET or NOT?
Histamine is mentioned a lot in both patient groups and in literature as somehow connected with NETs, particularly with so called carcinoid syndrome (CS). In fact, various putative mediators, including serotonin, catecholamines, brady- and tachykinins, kallikrein, histamine, motilin, and prostaglandins, have been suggested as potential causative factors for the symptoms and complications associated with CS. It is generally believed that most of these tumour-derived secretory products are inactivated by hepatocytes and, therefore, only cause symptoms when they either bypass or are secreted outside of the portal vein drainage system. I wanted to focus on Histamine in this article. But what…
Living with Neuroendocrine Cancer – the 7 Year Itch
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…