The NET Effect Series - Ronny Allan - Living with Neuroendocrine Cancer

18Aug 2023 by Ronny Allan No Comments

Blood pressure – The NET Effect

Blood pressure (BP) is a commonly discussed subject in my 8600 strong group. But when you look at the prevalence of elevated BP beyond nationally stated thresholds (hypertension), it's patently obvious that many people with a NET will have elevated BP issues regardless (see figures below). Nonetheless, patients often attempt to link it to NET, even when a diagnosis of NET comes after their hypertension diagnosis, although this is possible sequence in certain scenarios covered in this blog post. I also noted there were several causal sources of hypertension but with many other contributory factors. The aim of this blog post is to look at known linkages to elevated BP and NETs. Prevalence of Hypertension Clearly differences will emerge from country to country and region to region, but I found they…

23Apr 2023 by Ronny Allan No Comments

Low FODMAPs – The NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series

Background Many people with NET have had issues prior to diagnosis and then continue to have similar issues after. For some it will be either one, i.e. no issues before but issues after or vice versa. However, it's even possible that some people have will have different issues after diagnosis than they had before, e.g. the side effects of the treatment will produce new problems for those people. In the early days, I once said to my Oncologist "I was never misdiagnosed with irritable bowel syndrome (IBS) but I sometimes feel like I have it now". IBS is said to affect up to 1 in 7 of the 'western' population in varying degrees of severity with the symptoms of abdominal pain and abnormal bowel habits (constipation, diarrhea or a mixture…

10Apr 2023 by Ronny Allan No Comments

Semaglutide (e.g. Ozempic) For adults with type 2 diabetes – The NET Effect

Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series

BackgroundThis subject of semaglutide (e.g. Ozempic) is appearing regularly in my private Facebook group, and I can see there might be some confusion out there. But first, I wanted to state that this post is not about me saying semaglutide (or whatever brand names are included in this post) is something you should be taking or not. That is the responsibility of your doctors in conjunction with you the patient. Nor is this post to be considered in any way a promotion for the drug or the manufacturer, I have no relationship or communications with the manufacturer, nor am I taking this drug. I merely wanted to point out some facts about this drug, mainly from the manufacturer's website and hopefully provide some context for those who may be confused. That said, clearly…

10Mar 2023 by Ronny Allan No Comments

Fructose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series

Background When I cast my mind back to my very first surgery, I remember all sorts of 'plumbing' issues but was told it would take a while for my adjusted plumbing to repair and do its work once more. It's not gone fully back to normal, but I accept minor side effects of getting rid of cancer (metastatic with small intestine NET primary). My diet is slightly different nowadays as I endeavour to return to that normality, and I have a good handle on what makes me move faster AND slower. Constipation is not good either, so I try to find a middle ground. I started taking pancreatic enzyme replacement therapy in 2018 and often use that to offset a meal containing more fat than other meals, similar reducing dosages for lower fat…

11Jan 2023 by Ronny Allan 3 Comments

Lactose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series

Background When I cast my mind back to my very first surgery, I remember asking my Oncologist what I could do to put on weight. He said to drink full-fat milk. I was compliant in those days without reverting to Dr Google. Anyway, I did put on weight but perhaps the milk played a small part in that, and I eventually returned to semi-skimmed which I continue to use today (12 years on). My breakfast regime in the last 12 years since that surgery contains regular semi-skimmed milk and my many cups of tea have the same milk added. I guess there is milk in many other things such as dairy products which I happily consume. I don't believe I have any lactose intolerance to worry about. Given the…

28Jul 2020 by Ronny Allan 3 Comments

Paraneoplastic Syndromes – the NET Effect

Patient Advocacy, Survivorship, The NET Effect Series

Spectrum of paraneoplastic humoral syndromes secondary to NETs. CT, calcitonin; PTHrP, parathyroid hormone related peptide; CGRP, calcitonin gene related peptide; GLP, glucagon like peptide; ANP, atrial natriuretic peptide; VIP, vasointestinal peptide (*). Citation: Endocrine-Related Cancer 17, 3; 10.1677/ERC-10-0024 (* Author's note: not the usual description of VIP indicating a potential ectopic context) Although several hypotheses have been proposed regarding the pathogenesis of PNSs, the precise mechanism that leads to the development of PNS remains largely unknown. (In simple terms, pathogenesis means "the manner of development of a disease"Disclaimer. I read widely and noted various papers where there was clearly confusion about the classification of paraneoplastic in relation to Neuroendocrine Neoplasms. Some papers grouped known Neuroendocrine Tumour hormonal syndromes in, but others were more specific by filtering these into ectopic scenarios. …

27Mar 2019 by Ronny Allan 7 Comments

Rosacea – the NET Effect

Awareness, Patient Advocacy, The NET Effect Series

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…

05Feb 2019 by Ronny Allan 1 Comment

Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

The NET Effect Series, Treatment

What are Proton pump inhibitors (PPIs)?Proton pump inhibitors (PPIs) are among the most commonly used medications in the world. They 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 ulcersNSAID-associated ulcerUlcersGastroesophageal 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…

16Sep 2018 by Ronny Allan 3 Comments

Diabetes – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, The NET Effect Series

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…

09Oct 2017 by Ronny Allan 5 Comments

Weight – the NET Effect

Diet and Nutrition, Survivorship, The NET Effect Series

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 question with "no" and this response triggered a sequence of…

08Sep 2016 by Ronny Allan 20 Comments

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series

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…

15Jan 2016 by Ronny Allan 10 Comments

Alcohol – the NET Effect

Living with Neuroendocrine Cancer, The NET Effect Series

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…

12Dec 2014 by Ronny Allan 9 Comments

Chocolate – the NET effect

Diet and Nutrition, Humour, The NET Effect Series

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

Category: The NET Effect Series