Ronny Allan - Living with Neuroendocrine Cancer

02Dec 2023 by Ronny Allan 2 Comments

Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus

I was delighted to see this clinical trial which looks at the efficacy of PRRT (Lu177) vs the efficacy of Everolimus (Afinitor). The latter is approved for the treatment of adult patients with progressive, well-differentiated non-functional, neuroendocrine tumors (NET) of gastrointestinal (GI) or lung origin with unresectable, locally advanced or metastatic disease (US FDA wording, Europe is similar). What is this trial? This phase II trial studies the effect of lutetium Lu 177 dotatate compared to the usual treatment (everolimus) in treating patients with somatostatin receptor positive bronchial neuroendocrine tumors that have spread to other places in the body (advanced). Radioactive drugs, such as lutetium Lu 177 dotatate, may carry radiation directly to tumor cells and may reduce harm to normal cells. Lutetium Lu 177 dotatate may be more effective…

02Dec 2023 by Ronny Allan 15 Comments

Opinion: Let’s attack Cancer metaphors

Patient Advocacy, Survivorship

Since I started blogging, I've read dozens of articles on the subject of 'cancer metaphors' and in particular their use in describing cancer experiences with the words 'fight', 'battle' and other 'military' sounding terms. The authors say that perhaps this is not the best language to use. One author used the term 'violence' to describe these type of metaphors. A ridiculous misrepresentation of the metaphor in my opinion. Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use. I don't like Cancer - it attacked me, it attacked my family, it attacked others I know, it has killed people I know....... it has killed millions of people and changed many lives. I'm 'fighting' Cancer. I'm in a 'battle' with Cancer. But I…

30Nov 2023 by Ronny Allan No Comments

A review of November 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

Newsletters

November is always busier as I help spread awareness for 10th Nov (remembering that every day is 10th Nov on my site!). I also managed to push out quite a few blogs, some 'remasters' from 2014 but with their originality from that time. Others include the ENETS Guideline series, a work in progress. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites, we might be heading off in the snow soon! It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night. I am very grateful. Below, I'll…

29Nov 2023 by Ronny Allan No Comments

European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Digestive Neuroendocrine Carcinoma

Latest ENETS Guidelines

This ENETS guidance paper, developed by a multidisciplinary working group, provides up-to-date and practical advice on the diagnosis and management of digestive neuroendocrine carcinoma, based on recent developments and study results. These recommendations aim to pave the road for more standardized care for our patients resulting in improved outcomes. However, it's true to say that the prognosis for differentiated Neuroendocrine Carcinomas (NEC) is generally poorer than the less aggressive Neuroendocrine Tumours (NET).Surgery can be of benefit for localized disease after extensive preoperative imaging. Carboplatin in combination with etoposide is recommended as first-line treatment for metastatic disease. Irinotecan with fluoropyrimidines has the best evidence as second-line treatment. Immunotherapy plays a minor role in biomarker-unselected patients. Molecular profiling if available is encouraged to identify new targets. More prospective clinical trials are highly…

20Nov 2023 by Ronny Allan No Comments

Neuroendocrine Cancer – Clinical Esoterica

Awareness

One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, weight loss, weight gain, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood pressure.…

19Nov 2023 by Ronny Allan 1 Comment

Neuroendocrine Cancer – The F Words

Patient Advocacy

When I first created my blog in April 2014, I had to find some material to lead up to my 84 mile walk (at the time, it was a temporary vehicle for the single purpose of raising money for charity). An idea I had probably led to the longer term survival of this blog after people quite liked the descriptions of well known words used in NET parlance. I managed this using an A to Z list over approximately 26 days which was perfect for my timeline. I gradually renamed those early blog posts and I just noticed that the "F words" survived and this is a remaster! Enjoy the F words, I'm sure we have all used them many times 🤬😊 Flushing In early 2010, I had been experiencing…

17Nov 2023 by Ronny Allan 2 Comments

Laughter is the best medicine

Humour

Laughter is important. This is a remastered version of one of my early blog posts. It centred on a 'get-well' card I received recuperating in hospital after my first major surgery. The person who sent it knew I had a sense of humour, and it did make me smile. My surgeon's secretary came to visit me, and I invited her to check out my cards....... she fell about on the floor laughing! That caused me to laugh (carefully!). All the nurses looking after me had a good laugh too! How many times have you heard it said that laughter is the best medicine? I can certainly remember this phrase being said when I was a child. But it's much older than the 1960's, apparently humour was introduced as a viable medical option…

14Nov 2023 by Ronny Allan No Comments

European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for gastric neuroendocrine tumours (NETs) G1–G3

Latest ENETS Guidelines

The ENETS 2023 guideline for gNETs are combined with the guidelines for Duodenal NET (dNET) due to their close relationship in anatomical terms. Gastric neuroendocrine neoplasms (gNENs) are tumours with an increasing annual incidence and. The vast majority of gNENs are well-differentiated neuroendrocrine tumours (NETs), which are usually classified according to the background gastric pathology into three major categories known as "types" - these should not be confused with "grades" which are generated by histopathological tissue sampling (biopsy). Type I when chronic atrophic gastritis (CAG) is present resulting in hypergastrinaemia (high Gastrin) and high gastric pH. They are the most common type, accounting for 75%–80% of all gNENs. Type I gNETs are normally 'indolent' with negligible risk of metastases (<5%) and excellent long-term survival (almost 100%). Type II when the tumour occurs due…

13Nov 2023 by Ronny Allan 1 Comment

European Neuroendocrine Tumor Society (ENETS) 2023 guidance paper for Duodenal neuroendocrine tumours (NETs) G1–G3

Latest ENETS Guidelines

The ENETS 2023 guideline for dNETs are combined with the guidelines for Gastric NET (gNET) due to their close relationship in anatomical terms. But there are functional linkages to the pancreas, therefore also links to that as above. The duodenum is technically part of the small intestine, and you can find that in most anatomy-based descriptions. One of the research references I used was titled “Somewhere between the pancreas and the small intestine” and in the case of Duodenal NENs (dNENs), I can understand why they adopted that unconventional anatomy description. I suspect they contextually meant that they are not like either of these organs, but they share some similarities. This seems at odds with the ENETs decision to link guidelines for stomach and duodenal in one. They are not…

10Nov 2023 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 Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after surgery 13 years after first surgery 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…

09Nov 2023 by Ronny Allan 6 Comments

Piss off Cancer, it’s been 13 years since my “big surgery”

Awareness, Inspiration

D Day I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention, didn’t have a much grander announcement than the one presented to me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if…

08Nov 2023 by Ronny Allan No Comments

When Should Genetic Testing Be Performed in Patients With Neuroendocrine Tumors?

Patient Advocacy

Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jennifer Eads talks about the tricky issue of when Genetic Testing Be Performed in Patients with Neuroendocrine Tumors? Jennifer R. Eads, MD Associate Professor of Clinical Medicine Physician Lead, GI Clinical Research Director, National Clinical Trials Network Director, Penn Neuroendocrine Tumor Program Division of Hematology and Oncology University of Pennsylvania, Abramson Cancer Center Perelman Center for Advanced Medicine Philadelphia, PA The discussion is centred on the following statement and question When Should Genetic Testing Be Performed in Patients with Neuroendocrine Tumors? Expert Perspectives | When Should Genetic Testing Be…

07Nov 2023 by Ronny Allan 2 Comments

8th November 2010 – on the way to hospital for surgery, alert the crash team!

Treatment

The Journey to the Hospital on 8th November didn’t go smoothly!I had to be admitted to hospital for my surgery on 8th Nov 2010, but the surgery was not taking place until 9th November. The technical reason for that is explained further below. Not a good start, 13 years ago today, Chris was driving me to the hospital for my first surgery, the "my big surgery" as I call it. It was "debulking" i.e. get as much as possible. In the end, the liver was left for another day.I had been working since being diagnosed and was still sending work emails during the journey on an ancient device called a Blackberry! Remember them? Both my thumbs would have been going ten to the dozen! After all, loose ends must be tied…

06Nov 2023 by Ronny Allan 5 Comments

Neuroendocrine Cancer: Make time for your wellness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I’m sorry to hear that you have been diagnosed with Neuroendocrine Cancer. It’s normal to feel scared, angry, or sad when dealing with such a difficult situation. However, there are some ways to cope with these emotions and find some hope and optimism. Here are some tips that may help you think more positively during cancer:You could try to surround yourself with positive people and positive energy. Seek support from your friends, family, or a support group who can listen to you, encourage you, and even make you laugh. You can also read inspirational books, listen to uplifting music, or watch funny movies to boost your mood.As difficult as this may sound, minimise (within reason) the time you spend with negative people. Some people may drain your energy, criticize you,…

05Nov 2023 by Ronny Allan 1 Comment

Systemic Treatments for Advanced, Well-Differentiated, Small-Bowel Neuroendocrine Tumors That Progress on Somatostatin Analogues

Treatment

Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jonathan Strosberg is another favourite of mine, not only because he is a prodigious researcher, writing and helping to write various studies on NETs. Plus, I've actually met him!Jonathan R. Strosberg, MDProfessor of Gastrointestinal OncologySection Head, Neuroendocrine Tumor DivisionChair, Gastrointestinal Department Research ProgramMoffitt Cancer CenterTampa, FLThe discussion is centred on the following statement and questionSmall-bowel neuroendocrine tumors (NETs) will eventually progress* during ongoing somatostatin analogue (SSA) therapy. Treatment options for progressive disease are limited, but emerging therapies may offer new hope for these challenging-to-treat patients. (* remember the title…

04Nov 2023 by Ronny Allan No Comments

Imaging to Monitor Treatment Response in Patients With Advanced Neuroendocrine Tumors

Patient Advocacy

Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. "Dr Thor" is a favourite of mine. Worth pointing out that Dr Thor is giving is own view on this and that view may not be the same as your own doctor and/or hospital in terms of frequency and type of imaging devices used. Nonetheless, his opinions are always interesting. Also, worth pointing out this is based on "advanced" NETs, e.g. metastatic cases and is mainly focussed on gastroenteropancreatic (GEP) NETs, particularly small intestine and pancreatic. Thorvadur R. Halfdanarson MD from Mayo Rochester (and at the time of writing, President…

03Nov 2023 by Ronny Allan 2 Comments

Neuroendocrine Tumors and Carcinoid Syndrome: Individualizing Treatment to Match the Tumor Burden and Symptoms

Treatment

Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Jonathan Strosberg MD from Moffitt Cancer Center FloridaJennifer Eads MD from University of Pennsylvania, Abramson Cancer CenterThorvadur R. Halfdanarson MD from Mayo RochesterThe discussion is centred on the following statement and questionSomatostatin analogues (SSAs) are a therapeutic mainstay for the treatment of neuroendocrine tumors (NETs) and carcinoid syndrome, but, when progression occurs, additional interventions are needed. Some of the novel strategies that are being explored to treat patients with advanced NETs of varying origins include chimeric antigen receptor (CAR) T-cell therapies and peptide receptor radionuclide therapy (PRRT) using alpha-particle emitters.Q: How…

02Nov 2023 by Ronny Allan No Comments

Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

Patient Advocacy, Treatment

I thought this series might be useful for some of you after an interesting 'google alert' brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Jonathan Strosberg MD from Moffitt Cancer Center FloridaJennifer Eads MD from University of Pennsylvania, Abramson Cancer CenterThorvadur R. Halfdanarson MD from Mayo RochesterThe discussion is centred on numerous scenarios, and I'll list them all below. What are some of the recent developments in the treatment of NETs and carcinoid syndrome, and what might be on the horizon?The first oneSomatostatin analogues (SSAs) are a therapeutic mainstay for the treatment of neuroendocrine tumors (NETs) and carcinoid syndrome, but, when progression occurs, additional interventions are needed. Some of the novel strategies that are being explored to treat patients with advanced NETs…

31Oct 2023 by Ronny Allan No Comments

A review of October 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

Newsletters

October was a strange month, due to a combination of holiday recovery from September and terrible weather in UK, I managed to push out quite a few blogs, many 'remasters' from 2014 but with their originality from that time. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites, albeit October was a one off. It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night. I am very grateful. Below, I'll list the top 10 performing blog posts in October, I can assure you there is some great…

30Oct 2023 by Ronny Allan 1 Comment

Piss off cancer – I’m 68

Awareness, Inspiration

I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It's amazing to think something that would eventually kill me without intervention, didn't have a much grander announcement than the one presented to…

29Oct 2023 by Ronny Allan 2 Comments

European Neuroendocrine Tumor Society 2023 guidance paper for functioning pancreatic neuroendocrine tumour syndromes

Latest ENETS Guidelines

There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places. In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009. But underneath that are some excellent MDTs not yet accredited who may still utilise ENETs guidelines to treat and manage their patients. This 2023 guideline paper sets the scene for an important and complex group of tumours - pancreatic NETs. It's well known and accepted that the minority of pancreatic NETs are nonfunctional, depending on where you look, anything between 50 and 85%. This means functional pancreatic NETs are less common than nonfunctional. The reason for emphasis is that patient support…

28Oct 2023 by Ronny Allan 2 Comments

European Neuroendocrine Tumour Society (ENETS) 2023 guidance paper for nonfunctioning pancreatic neuroendocrine tumours

Latest ENETS Guidelines

There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places. In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009. But underneath that are some excellent MDTs not yet accredited who may still utilise ENETs guidelines to treat and manage their patients. This 2023 guideline paper sets the scene for an important and complex group of tumours - pancreatic NETs. It's well known and accepted that the majority of pancreatic NETs are non-functional, depending on where you look, anything between 50 and 85%. “Non-functional” means that the tumour doesn’t produce a sufficient set of symptoms to cause a hormonal syndrome.While the…

26Oct 2023 by Ronny Allan 2 Comments

Every Day is World Neuroendocrine Cancer Day!

Awareness, Patient Advocacy

Opinion:In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me. Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery. Read about this here - I even woke up on November 10th after major surgery. You'll note the title of this post is "World Neuroendocrine Cancer Day" and that is because (so called) "NET Cancer Day" is not good awareness. It's a terrible joining of cancer words and does not make sense as there is no such term as "Neuroendocrine Tumour Cancer". And if we use just "NET" then in cancer classification terms, it can be perceived we excluded the Neuroendocrine Carcinoma (NEC) guys…

24Oct 2023 by Ronny Allan No Comments

No flushes please!

Patient Advocacy, Survivorship, Treatment

Remastered 24th Oct 2023 Original Blog 6th Sep 2014 (but talking in public about my 2010 experiences). Despite people's expectations, diagnosing Cancer isn't a two-minute job. There is a whole host of stuff to consider, and medical staff clearly want to get it 100% correct in order to plan and manage the patient's treatment. I wrote a blog on 26 July "celebrating" 4 years since diagnosis - it's worth a read, check it out by clicking here. Continuing with the 'four years on' theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis. I think many people might expect a quicker execution of treatment. However, I cannot remember becoming impatient, albeit mine was to be palliative/cytoreductive (tumour debulking) rather than curative. Sometimes it's…

21Oct 2023 by Ronny Allan 1 Comment

The right awareness can lead to speedier diagnoses and save lives

Awareness, Living with Neuroendocrine Cancer, Treatment

ORIGINAL POST (20th May 2014) I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away. I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog. I'm thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the issues he faced are well known to Neuroendocrine Cancer patients, many of whom are readers. In the past week, the newspapers have published…

20Oct 2023 by Ronny Allan 4 Comments

My treatment is a pain in the butt!

Living with Neuroendocrine Cancer, Treatment

This title is a bit 'tongue in cheek' (....did you see what I did there?) I'm very happy to have had treatments for my stage IV cancer, I can think of far worse scenarios.When I was first diagnosed, the dreaded word 'Chemo' was discussed. Actually, Chemo isn't particularly effective in treating low grade Neuroendocrine Cancer, although I've heard of cases where it has made a difference. It's mainly used in high grade (Grade 3) but also in Grade 2, particularly at the higher end of the grading scale of KI67/Mitotic Count. I was pleased later when that was dismissed as an option. For some cancer patients the word can cause concern and anxiety. Some of my treatments ended up being a pain in the butt both literally and metaphorically.Lanreotide (Somatuline Autogel)This…

18Oct 2023 by Ronny Allan 2 Comments

Exercise – it’s a free prescription

Inspiration, Patient Advocacy

Exercise is a free prescription. Clearly, I need to be careful with that statement given my aversion for cancer myths but it was once prescribed to me to get me through an awful period in 2013. The vast majority of doctors will tell you exercise is good for us but like me they must realise that it sometimes takes quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!). In fact, my blog was actually created to document my return to fitness and good health 12 months prior to that! I'm no stranger to exercise having served for 29 years in the military. However, I'm not 21 anymore and I have some health…

17Oct 2023 by Ronny Allan 4 Comments

Blogging is a full-time job – and I walked right into it!

Inspiration, Living with Neuroendocrine Cancer, Survivorship

My very first blog post - 'remastered' in 2023! The original post as I published it on 29 Apr 2014 This is a new skill so bear with me, please! The aim of this blog is to post a running commentary of a walk of Hadrian's Wall with my wife Chris. The walk commences 26 May 14 at Wallsend in East Newcastle and completes on the evening of 31 May 14 at Bowness-on-Solway. The walk is for two purposes: 1. To raise awareness of Neuroendocrine Cancer 2. To promote and fundraise for PLANETS Charity (Pancreatic, Liver And Neuroendocrine Tumours). As a lead-up to the actual walk itself, I'll be blogging daily with an A to Z of my life-changing experience together with any interesting stories arising from the training and preparation…

16Oct 2023 by Ronny Allan 2 Comments

The Big C – a subject nobody wants to talk about

Patient Advocacy

When I launched my blog with the sole aim of fundraising for a walk along Hadrian's Wall, the first couple of posts I published were all about why Chris and I were doing this 84-mile walk. After that, it suddenly got difficult. I then had a brainwave ..... let's do an A to Z and I started with a short list (some letters had shorter lists than others (Q, J, Z etc). I've been gradually recycling these early posts as a way of updating their templates plus totally changing the content of most. This one was previously the "C words". Curiously, the only one which also still exists is the "F words" 😁 I might update that one next! Now, there actually is a term "C word" and it's used in…

15Oct 2023 by Ronny Allan 11 Comments

Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

Awareness

Share this post please An awareness post from Ronny Allan The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned. However, some cancers are in the 'difficult to diagnose' category. Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays. In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! [caption id="attachment_35516" align="aligncenter" width="640"] Click to read my own story[/caption] In some cases, it can be a little bit noisy. For example, some of the most common misdiagnoses appears to be Irritable Bowel Syndrome (IBS), asthma, or menopause. Patients complain of abdominal pain, wheezing,…

14Oct 2023 by Ronny Allan No Comments

Meet Edison® Histotripsy System – powerful bubbles

Clinical Trials and Research, Patient Advocacy, Treatment

Please read this before asking questionsThis is the story of a new treatment, a technique rather than a drug. It can be equated to liver embolization or tumour ablation but uses what would appear to be a more effective targeted therapy. It's early days, the fact that it has been approved by FDA (see wording below) is about all we know but this blog will be kept live. You are firing off questions to me, but I do not have many answers yet. 1. I do not know for sure which hospitals will be purchasing. But I will open up a section below if I get firm details. This does not mean you can access the treatment. 2. No, there are no trials just for NET (why would there be? It's not a…

12Oct 2023 by Ronny Allan 10 Comments

Always thank your Nurse – sometimes they’re the only one between you and a hearse!

Inspiration, Survivorship

I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (you should've seen the other guy). Bar the odd mandatory injection, I avoided both boxing and nurses for many years after that. But now ...... You may remember I discussed how my cancer was diagnosed following a fairly innocuous conversation at my GP's Surgery in May 2010, see blog post 'Diagnosis - I'm no longer in control'. That nurse was professional, thorough and she clearly went the extra mile for her patients. She has my eternal thanks for sending me down a different path in the game of chance that is life. I often wonder where I would be…

11Oct 2023 by Ronny Allan 3 Comments

My stomach 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......).This major undertaking was within 4 years of my diagnosis and within two years of 3 surgeries and I was borderline stable. I wanted to get it done while I was able!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…

09Oct 2023 by Ronny Allan 7 Comments

Neuroendocrine Cancer: Troublesome Thyroids

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

In 2013, just when I thought everything seemed to be under control, I was told I had a 'lesion' on the left upper lobe of my thyroid. At the time, it was a bit of a shock as I had already been subjected to some radical surgery and wondered if this was just part of the relentless march of metastatic NET disease. The thyroid gland does in fact get mentioned frequently in NET patient discussions but many of the conversations I monitored didn't seem to fit my scenario - cue relentless study! I've been meaning to write this blog for some time but here is a synopsis of my research translated into 'patient speak'. This is intentionally brief, it's a big subject. I'll finish off with an update on where I…

08Oct 2023 by Ronny Allan No Comments

Another dartboard event, another first

Patient Advocacy, Survivorship

On 7th October 2023, another dartboard event, another first. I think I've lost count of my Covid 19 and Flu vaccinations, particularly the latter which has been going on for 20+ years. But this year was the first time I received both vaccinations at the same time. This is known in healthcare circles as 'coadministration' and is widespread practice. Both references below (UK and US) confirm this strategy. Coadministration of Covid-19 and Flu is new on the basis that Covid-19 is relatively new. Clearly a sign of the times but from what I've read and studied, it's safe and effective with no compromise in the efficacy of the vaccines. There are no contraindications with these vaccines and any of my Neuroendocrine Cancer medications, or indeed any of my medications. 24…

07Oct 2023 by Ronny Allan 3 Comments

Shrek and Princess Fiona

Humour, Inspiration, Survivorship

I was looking through some old photographs and came across this one I thought you guys might like. It's pre-diagnosis round 2008 (although I didn't know cancer was growing inside me). As you can see, despite being an ogre, Shrek is actually quite a handsome chap! Moreover, Princess Fiona is as you would expect, beautiful and radiant. There's a bit of a story behind this picture as Chris (Princess Fiona) was in fact not very well at the time.This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (mad ex paratrooper) and his lovely wife Babs. Poor Chris developed a mild pneumonia on day 1 when we were in San Francisco having been a bit 'peaky' on the plane. Despite a…

06Oct 2023 by Ronny Allan 1 Comment

Just got (a) shot in the buttocks

Humour, Inspiration, Patient Advocacy, Treatment

I love watching films and Tom Hanks is one of my favourite actors. He's played such a wide range of parts and I've found every single one of his films enjoyable. I think the first one I remember was 'Big' - a cracking family film for all ages. When I saw the large floor piano keyboard in Schwartz toy store in New York, I had to give it a go (video or photo to follow if I can find it!). On the opposite side of the scale, he's also been in some quite gory films such as 'Saving Private Ryan' - the first 20 minutes sure tested out my surround sound and subwoofer!However, one of my firm favourites is Forrest Gump. A multi-decade spectacular, amazing acting, amazing locations, amazing visual…

05Oct 2023 by Ronny Allan 2 Comments

Dr Google will see you now

Patient Advocacy, Survivorship

Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA 'Alexa' to look for me! I even dabble in artificial intelligence (AI) (but I tread carefully on both). However, you need to be very careful in acceptance of what is credible information and what isn't. As a relatively experienced health blogger and activist, I like to think of myself as 'internet savvy', so I occasionally find myself using 'Dr Google' to diagnose my own aches, pains and unusual feelings (and I confess to using it to help others). I mostly find there are no real or definitive answers online for many patient- reported issues. All of that said, there is no doubt that I am a big supporter of…

04Oct 2023 by Ronny Allan 7 Comments

My right-hand woman – Chris

Inspiration, Living with Neuroendocrine Cancer, Survivorship, Travel with Ronny

There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life.I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was in 2010-2014 but I have a lot of people to thank for some excellent progress. My son & daughter's families have all been there for me and although my 4 grandsons don't fully understand the situation, their presence in my life is a great tonic.When I…

03Oct 2023 by Ronny Allan 1 Comment

Who needs a gallbladder anyway?

Diet and Nutrition, Treatment

We can survive without a gallbladder, but clearly it is a useful, functioning organ, and we are better off to keep it if we can. There are times when things can go wrong such as gallstones, sludge and blocked ducts, and then it may need to be removed. However……even though there wasn’t really anything wrong with my gallbladder in 2010/2011, I was convinced it had to go. For info, gallstones incidence in the general population makes it considerably more common than NETs so it follows that some NET patients will have a gallstone issue totally unrelated to their NET. Gallstones are thought to be caused by an imbalance in the chemical make-up of bile inside the gallbladder. Bile is a liquid produced by the liver to help digestion. For some,…

02Oct 2023 by Ronny Allan 3 Comments

Neuroendocrine Cancer Clinical Trial – Lutetium-177Lu (Satoreotide)

Clinical Trials and Research

What is Satoreotide? It's an agonist treatment. i.e. a 'next generation' radiologand for Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds to both activated and unactivated somatostatin receptors which are upregulated on these tumours. There is far higher binding via this mechanism than standard octreotate. The technical name of the radiopharmaceutical is Satoreotide tetraxetan lutetium-177 (author's note, I'm guessing but it could be a variant of Lanreotide). Somatostatin type 2 (SST2) receptor is overexpressed in many around 80% of NETs, some NEC and in certain hard-to-treat cancers such as small cell lung cancer (SCLC) and neuroblastoma, an aggressive, rare type of cancer that occurs mainly in young children. It was once named JR11 when owned by Ipsen (see history below). The term 'antagonist' is important and…

30Sep 2023 by Ronny Allan No Comments

A review of September 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

Newsletters

On my website RonnyAllan.NET, September was an interesting month because I had pushed out some blogs before I went on a planned overseas holiday from 6th - 25th Sep and then pushed out some more on return. This had the effect of producing higher figures than August. Normally holidays mean lower figures. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night. I am very grateful. Below, I'll list the top 10 performing blog posts in September, I…

29Sep 2023 by Ronny Allan 3 Comments

Never mind the Bollocks – here’s the cancer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

I don't tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to be teased out. For those who follow my blog in detail, you may remember the post entitled "Neuroendocrine Cancer - Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences" (now named "a difficult jigsaw) As you can see from the title above, I got hooked on a bunch of 'synonyms' that represent the difficulty in sorting out what can be attributed to Neuroendocrine Tumours (NETs) and what might be something else. You'll note they all begin with the letter 'S' except 'Comorbidities' and 'Coincidences'. However, these 2 were actually retrospective add-ons to the blog title and there is a potential overlap between both. Life…

28Sep 2023 by Ronny Allan No Comments

First and only FDA-cleared, fully automated chromogranin A assay

A Spotlight on NENs - Testing Series, Clinical Trials and Research, Patient Advocacy

There has been controversy about the utility of Chromogranin A for many years now. Specialists have been critical about its use but to be fair even those less critical still confirm that alone it would not be trusted to formally diagnose Neuroendocrine Cancer. That said, it was still controversial when certain US guidelines were updated to recommend it is not regularly tested. It's well known for being a sensitive but non-specific marker for most tumours of Neuroendocrine type, the non-specificity is mostly due to the other conditions, some of which are highly prevalent in many countries, including but not limited to the use of proton pump inhibitors, heart disease and kidney disease. Another criticism has been the lack of faith in using it to assess reaction to treatment.I have to say,…

27Sep 2023 by Ronny Allan No Comments

Neuroendocrine Cancer: Question, Clarify, Confirm

Patient Advocacy

One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not. And I don't always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date. I attempted to pin this down in my much read "10 questions to ask your specialist" but perhaps this post will supplement this list extending it to any doctor at any type of appointment, not just diagnosis. If your doctor or pathology report says you have…

25Sep 2023 by Ronny Allan No Comments

Clinical Trial – Lutathera NETTER-2 Important Update

Clinical Trials and Research, Treatment

UPDATE - Sep 25th, 2023 - Novartis radioligand therapy Lutathera® demonstrated statistically significant and clinically meaningful progression-free survival in first line advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs)Phase III NETTER-2 trial met primary endpoint of improvement in progression-free survival (PFS) and key secondary endpoint of objective response rate (ORR) in patients with Grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs) who received first line treatment with Lutathera® in combination with long-acting octreotide, versus high-dose long-acting octreotide alone. Lutathera is the first radioligand therapy (RLT) to demonstrate clinically meaningful benefit in a first line setting. Findings to be presented at an upcoming medical meeting and discussed with regulatory authorities, with submissions to follow What this great news means for NET patients is not yet clear, but the implications suggest a first line…

10Sep 2023 by Ronny Allan No Comments

Lanreotide: Ipsen injection devices vs generic injection devices

Treatment

Whenever I get a chance to talk to a pharma involved in somatostatin analogue injection devices, I tell them one very important thing ...... "To the patient, the injection delivery is almost as important as the drug". I also add that my opinion is based on thousands of comments about the patient experience in my patient online group. My own experience is based on the use of Sandostatin Acetate (Octreotide) daily shots (the ones where you break an ampule open and suck the drug into the syringe etc). I was pleased to see some later developments in this area such as the BYNFEZIA PEN. However, the use of octreotide daily shots was a short-term solution to prepare me for surgery and this was followed by monthly somatuline autogel (Lanreortide) which I…

06Sep 2023 by Ronny Allan 17 Comments

Cancer doesn’t take holidays (but I do)

Inspiration, Living with Neuroendocrine Cancer

Glen Etive Scotland in 2018 [caption id="attachment_2911" align="alignleft" width="300"] Mt Jacinto near Palm Springs[/caption] After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my 'big surgery', holidays were put on the back burner, there were too many problems and too many risks - not least of which was the lack of overseas insurance cover for my condition. After 2 years of treatment including several surgeries, I was feeling more confident and my body had become stronger, holidays were put back on the agenda, but nothing too strenuous, nothing too far away. We stuck to Europe over the period 2012-2014. However, in 2015, I was getting more confident and managed to get back to one of my all-time favourite places - California. A total…

05Sep 2023 by Ronny Allan 10 Comments

Update from Ronny Allan: No evidence of progressive disease at any site

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

Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site".Very pleased!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…

04Sep 2023 by Ronny Allan 12 Comments

Exercise is Medicine

Inspiration, Survivorship, Travel with Ronny

Exercise is medicine. Clearly I need to be careful with that statement given my aversion for cancer myths. However, those who know me will totally get where I'm coming from, they will know that there is no way I am saying it cures cancer. What I am saying is that the vast majority of doctors will tell you exercise is good for us but like me they must realise that it sometimes takes quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!). I did write about this in 2014 when I was doing an A to Z of terms way back then - notice the difference in quality of blog template!!! (Exercise…