Ronny Allan - Living with Neuroendocrine Cancer

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…

03Sep 2023 by Ronny Allan No Comments

Jimmy Buffett 1946-2023 – Neuroendocrine Carcinoma (Merkel Cell Carcinoma)

Awareness

US singer-songwriter Jimmy Buffett, best known for his 1970's hit Margaritaville, has died aged 76. "Jimmy passed away peacefully on the night of September 1 surrounded by his family, friends, music and dogs," said a statement on his website. The cause of death has been given as Merkel Cell Carcinoma, a type of Neuroendocrine Carcinoma of the skin. Read more about Merkel Cell Carcinoma on Dana Farber - click here Many people in US and elsewhere will have heard of Jimmy and love his music. I vividly remember going into the Jimmy Buffett's Margaritaville in Universal Orlando Resort CityWalk and found his music very pleasant to listen to. RIP Jimmy, your name and music lives on! https://youtu.be/ohDqjRGqpIU Disclaimer I am not a doctor or any form of medical professional, practitioner…

03Sep 2023 by Ronny Allan 4 Comments

Passive patient or active advocate?

Awareness, Inspiration, Survivorship

I've been researching Neuroendocrine Cancer for some time now. Why do I do this? Whilst I have a great medical team, I'd also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don't want to be a passive patient, I want to be an active advocate for my own health. I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd). [caption id="attachment_1938" align="aligncenter" width="500"] Passive vs Activated Patient[/caption] I actually enjoy researching neuroendocrine disease and I'd like to think it was all in one book somewhere - this simply isn't the case! From what I've read since diagnosis, I suspect the 'all encompassing' book would need to be about 10…

02Sep 2023 by Ronny Allan 5 Comments

Childhood Cancer Awareness Month – Neuroendocrine Cancer (featuring Elizabeth)

General

September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many childhood cancer articles. You may not see one about NET though. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. I don't know that much about Childhood cancers, but I do know that over half of childhood cancers are either Acute Leukaemias or Brain Cancer, both of which are frequently in the news. It always breaks my heart when I read stories of children with cancer. I do know a…

31Aug 2023 by Ronny Allan No Comments

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

Newsletters

On my website RonnyAllan.NET, August was as quiet as July but in the second half, I accelerated publication of some posts. The month was also helped by the publication of a solid tumour clinical trial and the breaking news of the CABOZANITINIB trial for NETs (if you missed those see 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 August, I can assure you there is some great information in there, and you may have missed some of my newest…

30Aug 2023 by Ronny Allan 16 Comments

Is your glass half empty or half full?

Inspiration, Living with Neuroendocrine Cancer

Most people have probably heard of the saying "is your glass half empty or half full". If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way. I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to time. I'm only human and I've been in some dark places since diagnosis. However, I believe to continuously be in 'half empty mode' can have a detrimental effect on your…

28Aug 2023 by Ronny Allan 1 Comment

Neuroendocrine Cancer – normally slow but don’t be fooled!

Awareness

An awareness post from Ronny Allan. There are a lot of scary diseases in this world but some of them are particularly sneaky. One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. Don't be fooled, it's the great pretender. 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…

27Aug 2023 by Ronny Allan 15 Comments

Diagnosis – I’m no longer in control

Awareness, Survivorship

The clouds are gathering. Diagnosis. The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my General Practitioner (GP), referred to a specialist, had a bunch of tests, and now referred to an Oncologist. There were many hints along the way, but it did not reduce the out of body experience I was having that day. This happens to other people but not me. I felt in control. Rewind 2 months to May 2010...... I was happily working, getting stuff done, making things work. I had sufficient autonomy and freedom of manoeuvre. I felt in control. I'm happy as a pig in the proverbial! My annual Asthma clinic comes along and it's an opportunity to work…

26Aug 2023 by Ronny Allan 1 Comment

Phase 3 CABINET Clinical Trial – Cabozantinib for Advanced Neuroendocrine Tumours

Clinical Trials and Research

BREAKING NEWS - 24TH AUG 2023Exelixis Announces Remarkable Efficacy in CABINET Trial for Advanced Neuroendocrine TumorsOn August 24, 2023, Exelixis made an exciting announcement regarding the Phase 3 CABINET pivotal trial. This trial focused on evaluating the effectiveness of cabozantinib in treating advanced pancreatic and extra-pancreatic neuroendocrine tumors. The CABINET trial was a significant undertaking, involving multiple centers and enrolling a total of 290 patients who were divided into two groups.The trial progressed smoothly, but to everyone’s surprise, it was stopped early. The reason for this premature conclusion was the remarkable improvement in efficacy observed. The Alliance for Clinical Trials in Oncology independent Data and Safety Monitoring Board unanimously recommended ending the trial due to these unprecedented results."CABINET trial will be unblinded and stopped early due to a dramatic improvement…

26Aug 2023 by Ronny Allan 16 Comments

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my own experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity. This blog you are reading now was only ever intended to be a temporary supporting tool for that hike and its build up; but I was persuaded by good reviews and viewing numbers to keep it going. That suddenly made it more difficult!In my early blogs, there were several 'no go areas' which were either too complex or potentially controversial. I didn't really have much time to think them through properly at that point in time. However, over time, I started to realise the important of some of these…

21Aug 2023 by Ronny Allan 2 Comments

Piss off cancer, you’ve been annoying me for 13 years but I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

Actually it has been bothering me for more than 13 years, I just didn't know what was bothering me in the lead up. On 26 July 2010, had you said I'd be writing this 13 years later, I would have said no. I was diagnosed on 26th July 2010. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought. 10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think. Think great doctors, better treatments, better guidelines and sprinkle some luck on top. Some might say attitude helps but clearly scientific proof might be lacking there. One thing though, everyone is…

18Aug 2023 by Ronny Allan No Comments

Blood pressure – The NET Effect

The NET Effect Series

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…

12Aug 2023 by Ronny Allan 2 Comments

Lung cancer diagnosed early because of new tool

Clinical Trials and Research, Patient Advocacy

I'm a believer in science overtaking mortality figures and there is evidence of that already happening when you read the latest survival figures. But too many are still succumbing to this killer disease. I also believe that artificial intelligence (AI) has the potential to help. Even with cancers of the lung, where known causes are heavily linked to death rates, are decreasing but that is mainly due to preventative measures such as stopping smoking. However, not all cancers of the lung are caused by smoking. Most low-grade Lung NETs is a good example, there are others. I've had a flurry of initiatives appear in my inbox in the last month or two and wanted to document those here. These may not have an impact on you currently but a sign…

05Aug 2023 by Ronny Allan 2 Comments

The Cancer Legacy of Steve Jobs?

Awareness, Clinical Trials and Research

Just about everyone knows who Steve Jobs is but not many people have heard of Reed Jobs. Clearly a relative and is actually his son. Now aged 31, he wants to get into the cancer business via a venture capitalist initiative. The headline below looks great but it means cancer, not just Neuroendocrine Cancer (note the use of Steve Jobs' actual diagnosis). I first heard about this and switched off after the news article stated that Steve Jobs had Pancreatic Cancer. Don't get me wrong, I strongly believe that Pancreatic Cancer needs lots of attention and lots of funding and research. But so does Neuroendocrine Cancer including the actual cancer that Steve had, a Neuroendocrine Tumor of pancreatic origin. The article which brought back my attention to the usual Steve…

05Aug 2023 by Ronny Allan 3 Comments

Still here, just reshaped

Inspiration

The tallest tree in Wales had been damaged by a storm and was supposed to be cut down, but chainsaw artist Simon O'Rourke - Tree Carving found a better solution to symbolize the tree's last attempt to reach the sky. I suspect you could also call Simon a tree surgeon. I was reshaped too! In one of my diagnostic stories, I said that my body was slowly dying and that was just how it felt having been diagnosed with something that had not made some grand announcement. It slowly just crept into my life, occasionally giving small clues that it was there but nothing that pointed to a stage IV cancer that could not be cured. I guess that is what happens to many people and without screening for just…

02Aug 2023 by Ronny Allan No Comments

Phase 1 Clinical Trial AOH1996 for the Treatment of Refractory Solid Tumors

Clinical Trials and Research

Facebook Twitter Pinterest WhatsApp Email The City of Hope-developed small molecule AOH1996 targets a cancerous variant of the protein PCNA. In its mutated form, PCNA is critical in DNA replication and repair of all expanding tumors. Here we see untreated cancer cells (left) and cancer cells treated with AOH1996 (right) undergoing programmed cell death (violet). (Photo credit: City of Hope) This particular clinical trial for solid tumours has been widely reported in the news this week (July/august 2023). It is touted as a "cancer-killing pill" has appeared to "annihilate" solid tumours in early research - leaving healthy cells unaffected. Whether these are the words of the sponsor or the media is not clear. Some of the media wording may have been based on preclinical data on animal testing. The new…

31Jul 2023 by Ronny Allan No Comments

A review of July 2023 on RonnyAllan.NET

Newsletters

On my website RonnyAllan.NET, July was a bit quieter mainly due to my holiday and other commitments. However, there was still significant support within and without the community. Below, I'll list the top performing blog posts in July, I can assure you there is some great information in there, and you may have missed some of my newest blogs which made it to the top 10. Number 1 is the story of US Representative Joaquin Castro, great diagnostic story and showing signs of being vocal about NET and the US healthcare system to a much wider audience - this is great awareness too! Bonus photos of our walk in Dartmoor at the end. Best wishes to Joaquin Castro Do not miss this story [caption id="attachment_44523" align="aligncenter" width="640"] Click on the…

26Jul 2023 by Ronny Allan 4 Comments

13 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

I finally made 13 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 48 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes, and settled in my liver and beyond including, strangely, in my left armpit. It was incurable, and unique to serotonin secreting midgut Neuroendocrine Tumours, it had caused a dense fibrotic…

24Jul 2023 by Ronny Allan 2 Comments

Sometimes you gotta climb that hill, even if you get wet!

Inspiration, Patient Advocacy, Survivorship

Sometimes you gotta climb that hill, even if you get wet is another metaphor post. Earlier this month in July 2023, Chris and I set off to climb a hill on Dartmoor. The weather was unpredictable, and we anticipated getting wet alongside the physical effort needed to climb Cox Tor. We spent an hour steadily climbing up an approach path just to get to the base of Cox Tor and it had already rained twice at this point. The clouds were moving fast over our heads, dropping their rain each time. We still had to climb to the top and it was steeper than the first hour of the walk. I won't lie and say it never crossed my mind to cut this bit of our walk out and head south on…

23Jul 2023 by Ronny Allan No Comments

A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

Clinical Trials and Research, Patient Advocacy, Treatment

A major challenge that cancer surgeons face currently is that there are no reliable methods to identify the tissue type during surgery (other than fast tracking tissue sampling). The surgical procedures, therefore, rely extensively on the experience and judgment of the surgeon to decide on how much tissue to remove around the tumor margins. Sometimes this can result in the removal of excessive healthy tissue. On the other hand, not removing some tumour cells can often need a follow-up surgery to remove residual cancer tissue. This just adds to patient morbidity and long-term detrimental effects on the patient’s outcome. The use of tumour finding probes is not new and scientists have been looking at this for a number of years. Some healthcare commentators described some of these tools as working in…

19Jul 2023 by Ronny Allan No Comments

Biopsies – tissue is the issue!

Patient Advocacy

Biopsies for suspected cancer 13 years ago on 19th July 2010, I had a liver biopsy. Following some low hemoglobin and some weight loss reported to my GP surgery in May, I met with a specialist on 8th July and after sending me straight for a CT scan on the same day, I eventually had to have a liver biopsy done to confirm the cancer. I won't lie and say it was an enjoyable experience. I vividly remember a lot of discomfort including pain. At the time no-one knew I had metastatic Neuroendocrine Tumours; no-one knew I had associated carcinoid syndrome. I suspect that may have played a part in the discomfort of that important procedure. The doctor carrying out the biopsy had several assistants in the room and sent for…

18Jul 2023 by Ronny Allan 1 Comment

A person with Cancer fell into a hole and couldn’t get out……….

Awareness, Patient Advocacy, Survivorship

A person with Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper.A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper still and filled the bucket.A healthcare professional walked by. The person called, “Help! I can’t get out!” so the healthcare professional gave the person some drugs and said, "Take this it will…

17Jul 2023 by Ronny Allan 2 Comments

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny AllanWhat is a NET Specialist?"What is a NET Specialist" is a frequently asked question but there's no official definition of what constitutes a "NET Specialist", and it may differ from country to country/from region to region. Similarly, many people ask what makes a doctor an expert and that is a difficult question but let's just say specialist and expert are the same thing given there is no exam or special qualification to become one. In the broadest sense, a NET Specialist is a doctor who is not only knowledgeable about NETs but is also experienced in treating and managing this type of cancer. It is someone who sees a lot of NET patients in their clinics and…

04Jul 2023 by Ronny Allan 2 Comments

Joaquin Castro

Awareness

Who is Joaquin Castro? I have an international following so many people outside of USA may not know much about Joaquin Castro. He is an American lawyer and Democratic politician who has represented Texas's 20th congressional district in the United States House of Representatives since 2013. The district includes just over half of his native San Antonio.He was diagnosed with a Small Intestine NET in July 2022 after an incidental finding while he was working in Spain. His car hit a boar on a highway the night before he was due to fly home to the US. He was taken to hospital for a check-up. The hospital spotted some abnormalities in his scan and advised him to visit his doctor on return to US.One year later, he has told his story…

01Jul 2023 by Ronny Allan No Comments

Summary of June 2023 on RonnyAllan.NET

Newsletters

Summary - June was a relatively quiet month on my website RonnyAllan.NET - mainly due to me being on holiday for much of it! However, a respectable 18,000 blog views are not to be sniffed at! The top 10 for June are now listed. Take a look please, open them up, read them, share them. 1 Sometimes, you gotta climb that hill, even if it hurts (ronnyallan.net) This must have struck a chord. It's not a story about physical fitness, it's a metaphor about the mental challenges of living with cancer. [caption id="attachment_43915" align="aligncenter" width="640"] Click on the picture to read[/caption] 2 Currently trending on RonnyAllan.NET - Ronny Allan - Living with Neuroendocrine Cancer My post for busy people to catch up. [caption id="attachment_43009" align="aligncenter" width="640"] Click picture to read…

10Jun 2023 by Ronny Allan 6 Comments

Sometimes, you gotta climb that hill, even if it hurts

Inspiration, Patient Advocacy, Survivorship

I started my "sometimes you gotta climb that hill" series/campaign some years so. I used it as a metaphor based on my own experience of actually climbing up hills. In the first couple of years after diagnosis, there was no way I could have done some of the physical stuff I can do now - having 3 surgeries and recovering from all 3 put paid to that. But in hindsight, I don't believe I could have done some of these hills before I was diagnosed! To be bluntly honest with myself and you guys, I was too busy at work to keep myself in shape. The "climbing hills" metaphor can also be applied to living with a diagnosis of cancer - there are many metaphorical hills to climbOne of the first…

07Jun 2023 by Ronny Allan No Comments

A spotlight on duodenal Neuroendocrine Neoplasms (dNENs)

A spotlight on NENs - Types

What are Duodenal Neuroendocrine Neoplasms (dNEN)? 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. They are not normally treated like small intestine NETs (SI NETs) or pancreatic NETs (pNETs) but they share some relationships, particularly with the latter. They are also closely aligned to the stomach (Gastric NENs) in terms of symptoms and syndromes that they sometimes present. Although they are a type of NEN (i.e. dNENs),…

06Jun 2023 by Ronny Allan No Comments

Neuroendocrine Cancer: Awareness is key, but it must be the right message

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010. But it should be further forward, much further forward. In some areas, we appear to be going backwards. It's not where it should be because some people, some organisations, including some so-called advocacy organisations, at least one regional scientific organisation and some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message. A recent ASCO publication suggested the perceived rarity of NETs is holding back clinical research and in the same paragraph, also stated that NETs are uncommon but definitely not rare). It's no secret that I have been fairly 'pushy' for some years on this subject, and I will continue to…

04Jun 2023 by Ronny Allan 2 Comments

Summary of May 2023 on RonnyAllan.NET

Newsletters, Patient Advocacy

Summary May produced the best statistics in 2023, mainly due to your support for my blog post on Maria Menounos whose announcement headlined as "Pancreatic Cancer" caused a storm within the Neuroendocrine Cancer community. Below, I'll list the top performing blog posts in May and no secret which one is listed first. Repeat after me: Maria Menounos has Neuroendocrine Cancer (ronnyallan.net) [caption id="attachment_42595" align="aligncenter" width="640"] Click picture or heading to read more[/caption] Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3) (Beta plus) - (ronnyallan.net) [caption id="attachment_42803" align="aligncenter" width="640"] Read more by clicking on the picture or the heading above[/caption] The Human Anatomy of Neuroendocrine Cancer - Ronny Allan - Living with Neuroendocrine Cancer [caption id="attachment_42728" align="aligncenter" width="640"] Click to read more on the picture or the…

03Jun 2023 by Ronny Allan 1 Comment

Getting back in the saddle

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

The "getting back in the saddle" metaphorI thought back about a few periods since my diagnosis on 26th July 2010 about how I would 'get back in the saddle'. I suspect many cancer patients experience similar junction points in their own journeys. After I was told about my metastatic Neuroendocrine Cancer, work was my anchor, something that I felt comfortable and in control, so in effect that was my metaphoric saddle in the early days. But as my treatment came into view, particularly major surgery, clearly new thoughts about how quickly I could get 'back into the saddle' were on my mind. In fact, one of the first questions I asked my surgeon was "how much time off do I need before I can drive and also go to work". …

01Jun 2023 by Ronny Allan 2 Comments

Clinical Trial: Phase 1/2a Study of 23ME-00610 in Patients With Advanced Solid Malignancies (incl Neuroendocrine Neoplasms)

Clinical Trials and Research

Who are 23andMe?I personally had not heard of 23andMe but many people in North America might have. When you first look at what they do, you can be excused for thinking they are just another 'Ancestry' company, but they are more than that. They also get involved in genetics and health. To quote their marketing "we’re all of these things". Read more here: About us - 23andMe But what I found most interesting is that they have a clinical trial involving Neuroendocrine Tumors using their product 23ME-00610. However, an analysis of the documentation available indicates it is aimed at Grade 3 both well and poorly differentiated. Also includes small cell lung cancer (SCLC) and Merkel Cell Carcinoma. The results from this clinical trial were presented at a recent conference and I will…

24May 2023 by Ronny Allan No Comments

A spotlight on Chromogranin A

A Spotlight on NENs - Testing Series, Patient Advocacy

What is Chromogranin A? Chromogranin A (CgA) is an acidic protein released along with catecholamines from chromaffin cells and nerve terminals. This statement alone might explain why it's a good marker to use with Neuroendocrine Neoplasms. It is said to be a measure of tumour bulk. Depending on the test kit being used, you may also see test results for Chromogranin B (CgB) alongside CgA. CgB is said to be less affected by false positives and forms a useful adjunct to the more established chromogranin A measurement. The brand of test kit which includes CgB tends to be confined to Europe. Immunohistochemical Testing. CgA is one the most commonly used immunohistochemical (IHC) markers for neuroendocrine cells and their tumours. You may find the mention of CgA in your biopsy reports…

18May 2023 by Ronny Allan No Comments

Neuroendocrine Cancer: Catch them early, not late!

Awareness, Patient Advocacy

Diagnosing Neuroendocrine Neoplasms (NENs). It's no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can sometimes be difficult to see. Plus, many patients present with relatively routine day to day symptoms suggesting a myriad of day-to-day illnesses seen daily in every GP/PCP practice. But conversely, many are found incidentally while checking for something else, or in reaction to a visit to the ER/A&E or as a referral by primary care physicians for further checks at secondary facilities. A few examples: 1. Most appendiceal NETs are found when patients present with pain in the right lower quadrant i.e. symptoms of appendicitis. The resulting appendectomy will find the tumour. However, it's true to say that most appendectomies will be connected to appendicitis…

12May 2023 by Ronny Allan No Comments

A spotlight on Rectal Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy

What are Rectal NENsRectal Neuroendocrine Neoplasms (NENs) (rNENs) account for approximately 1-2% of all primary cancers in the rectum. The other main cancer types found in the rectum are regular adenocarcinomas (the vast majority) and some other rare types including Gastrointestinal stromal tumors (GIST) and Lymphoma. The vast majority of rNENs will be well differentiated, i.e. rectal Neuroendocrine Tumours (rNETs) and are mostly indolent tumours treated effectively with surgical procedures if less than 1cm in size. Above that size there are different scenarios. Most will be found incidentally upon presentation of classic rectal symptoms or via colonoscopy screenings and faecal tests which lead to colonoscopy follow ups. They are typically diagnosed in older patients but the incidence in younger patients is on the increase, see author's note below in epidemiology section. Poorly differentiated…

10May 2023 by Ronny Allan No Comments

Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3) (Beta plus)

Clinical Trials and Research, Treatment

A new clinical trial post.What is Terbium-161 (161Tb-DOTA-LM3) (Beta plus).Terbium-161 is a radioactive substance. DOTA-LM3 is a novel somatostatin antagonist targeted using somatostatin receptor number 2 (SSTR2). Combined they form a radioligand for use in Pepetide Receptor Radionuclide Therapy (PRRT). It's a beta emitter but labelled 'plus' on the basis it offers more than the currently approved Luthera product (lutetium 177 or 177Lu Dotaxxx series). There is evidence that terbium-161 (161Tb) is more powerful than 177Lu, not only in combination with SST2 agonists but particularly with SST2 antagonists.Agonist vs Antagonist in the context of PRRTThe currently approved Luthera product (lutetium 177 or 177Lu Dotaxxx series) are SST2 agonists. SST2 antagonists are more efficient because they can access more binding sites on the cell surface, resulting in higher tumour uptake and…

03May 2023 by Ronny Allan 3 Comments

Repeat after me: Maria Menounos has Neuroendocrine Cancer

Awareness

Like many people from outside USA, I don't really know anything about Maria Menounos. For those in the same boat, let me confirm she is a very well-known personality in USA. A journalist, television presenter and actress. She has hosted Extra and E! News; she was a TV correspondent for Today, Access Hollywood, and co-hosted the Eurovision Song Contest 2006 in Athens, Greece. She also co-created and is currently CEO of online podcast series network AfterBuzz TV. She is currently signed to WWE where she has served as an ambassador since 2013. She hosts the podcast 'Conversations with Maria Menounos'. She also has an impressive website here. All in all, she looks like an impressive and inspiring person. News broke today that she survived "Pancreatic Cancer" and that headline is currently…

01May 2023 by Ronny Allan 1 Comment

Summary of April 2023 on RonnyAllan.NET

Living with Neuroendocrine Cancer, Newsletters

Summary of RonnyAllan.NET website activity in April 2023 The top 10 most read posts in April are included below as the main product of this summary of my website RonnyAllan.NET in April 2023. A challenging month given other commitments and a rib injury sustained on holiday but pleased with my output. I hope there is something you missed and can catch up here. As usual, share this with anyone you think may benefit. Many thanks for reading. Oh yes, it's the great pretender - a new entry A new RonnyAllan.NET awareness campaign and it deserves to be shared to the world (oh yes!) as it may lead to a diagnosis. If this floats your boat - Click here or on the picture. [caption id="attachment_41518" align="aligncenter" width="640"] Click picture to read more[/caption]…

28Apr 2023 by Ronny Allan 2 Comments

A spotlight on 5-HIAA

A Spotlight on NENs - Testing Series, Patient Advocacy

Background. It's important to note that not every type of Neuroendocrine Neoplasm will get the same tests due to the heterogenous nature of this cancer type. Some are more specific than others. A wide range of tests may be necessary at diagnosis if the type of NET is not clear. This post will cover one of the main tests to check for a common type of Neuroendocrine Tumour (NET) that is known to secrete excess amounts of the hormone Serotonin leading to symptoms indicative of Carcinoid Syndrome. These tumours are often labelled using the antiquated and misnomer term ‘Carcinoid Tumour’ but more and more healthcare organisations and specialists are avoiding use of this term for several reasons. Mainly because the word has been 99% removed from the widely accepted World Health Organisation…

24Apr 2023 by Ronny Allan 5 Comments

The NET Detectives

Awareness, Patient Advocacy

The NET Detectives is an awareness post.Detecting NETsIn general, it's probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary. In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don't have a range of imaging devices on site, referrals are often necessary to investigate more. I don't believe it's right to say this referral is a misdiagnosis, it's just another stage in the investigation, another hunt for clues.The number of cases where incidental diagnoses occur is fairly significant in certain types. I have no numbers but appendiceal NETs are a good analogy. Symptoms are…

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…

16Apr 2023 by Ronny Allan 3 Comments

Neuroendocrine Cancer: looks can be deceiving

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Is this the face of a cancer patient?Yes, it is actually. This photo was taken on 31st October 2010. Three months prior, on 26 July 2010, Ronny Allan was diagnosed with metastatic Neuroendocrine Cancer, a small intestine primary, extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas, retroperitoneal fibrosis, some suspect areas above the diaphragm and multiple liver metastases. Twelve (12) days prior to this photo, Ronny had a liver embolization which resulted in a week's recuperation plus pain. Nine days after this photo was taken, Ronny had his first major surgery spending 18 days in hospital. Other surgeries followed. In 2023, despite many side effects of treatment since 2010, he still looks like a picture of health, ......... but you should see his insides! [caption id="attachment_41830" align="aligncenter" width="640"]…

12Apr 2023 by Ronny Allan No Comments

Piss off cancer, it’s 12 years since my liver surgery!

Patient Advocacy, Survivorship, Treatment

I'm still here 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 me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if a much…

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…

03Apr 2023 by Ronny Allan 4 Comments

Neuroendocrine Cancer: oh yes, it’s the great pretender

Awareness, Patient Advocacy

When I was diagnosed, I didn't even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment.It was hidingBut it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor. And what would this doctor have said at the time?I was never misdiagnosed because I was never diagnosed with anything that wasn't already there and documented. But despite my late stage and advanced diagnosis, some people were not as fortunate as me, an observant and efficient nurse sent me for blood tests, one thing or another led to…

01Apr 2023 by Ronny Allan No Comments

RonnyAllan.NET – Summary of March 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient Advocacy

Summary - Many thanks for supporting my social media in March. I remain keen to hear any suggestions of the sort of thing you would like me to research and publish. I am working on two or three more blog posts due to come in in the next 10 days, please stay tuned. The top 10 most-read posts in March are listed below: Tribute to the life and legacy of Miranda Filmer A story of strength and inspiration in the most trying of circumstances. Miranda and her parents are determined to help others despite the loss of Miranda. Click here or on the picture. [caption id="attachment_40842" align="aligncenter" width="640"] Click the picture to read more[/caption] My Home Page I turned it back on for a change of scenery. Click the picture…

30Mar 2023 by Ronny Allan No Comments

Pancreatic NET with carcinoid syndrome – not as common as you think

Patient Advocacy

Why do I need to write about this?I've been watching confusion surrounding symptomatic pancreatic NETs for years and it never ceases to amaze me that people automatically think "carcinoid syndrome". Despite the fact that pancreatic NETs were never included in the category of "carcinoid tumours"; and despite the fact that there are at least 6 or 7 known pancreatic NET hormonal syndromes, this myth persists. Don't misunderstand me though, a serotonin secreting pancreatic NET is possible, it's just not nearly as common as it's made out in patient groups and on some websites. It's a highly unusual scenario. Why is this a problem? A mixture of issues, including but not unlimited to; poor moderation in patient groups, websites out of date, doctors out of date, even the names of patient advocacy…

26Mar 2023 by Ronny Allan No Comments

A spotlight on Appendiceal Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series

What are Appendiceal NENsAppendiceal Neuroendocrine Neoplasms (NENs) account for approximately 60% of all primary cancers in the appendix. The other main cancer types found in the appendix are regular adenocarcinomas (including signet ring cell and goblet cell) and mucinous neoplasms such as Pseudomyxoma Peritonei (PMP) or Low-Grade Mucinous Neoplasms (LAMD). Appendiceal neuroendocrine tumours (aNET) (i.e. well differentiated) account for 75% of all aNENs, are mostly indolent tumours treated effectively with simple appendectomy. In fact, most are incidentally found upon presentation of right lower quadrant (RLQ) pain in keeping with appendicitis. They are typically (but not exclusively) diagnosed in younger patients. Poorly differentiated appendiceal Neuroendocrine Carcinomas (aNEC) resemble small-cell or large-cell neuroendocrine carcinomas of the lung, have aggressive behaviour, and usually present with metastatic disease at diagnosis.Mixed neuroendocrine-non-neuroendocrine neoplasms (MiNEN) are possible, particularly…

24Mar 2023 by Ronny Allan No Comments

Nuclidium wins award to study NET radiopharmaceutical – Phase 1 Clinical Trial of TraceNET (TM)

Clinical Trials and Research

What is TraceNETTM TraceNETTM is a a novel copper-based 'radiodiagnostic' for detecting neuroendocrine tumours (NET). The PET imaging agent candidate is the diagnostic component of NUCLIDIUM’s theranostic program, which comprises a true theranostic pair for diagnosing and treating NET patients, leveraging the company’s unique copper-based approach. The Phase 1 program for the diagnostic is the first step in its clinical development and is planned to commence in the first half of 2023. Nuclidium’s TraceNETTM program aims to overcome key limitations of existing radiodiagnostics and their corresponding therapeutics by increasing the sensitivity and diagnostic accuracy of NET imaging, including detecting metastases, while reducing the radiation burden for the patient. The TraceNETTM diagnostic consists of an imaging radioisotope (61Cu) and a somatostatin receptor (SSTR) antagonist-targeting molecule that binds with high affinity and specificity to…

16Mar 2023 by Ronny Allan No Comments

Experimental drug for Gastric NET – Netazepide

Clinical Trials and Research, Treatment

Gastric NETs When I wrote my post entitled "Spotlight on Gastric Neuroendocrine Neoplasms", I explained what these were with some emphasis on the association with hypergastrinemia (elevated fasting serum gastrin levels) with Type 1 and 2 gNETs being differentiated by the settings in which this occurs. This oversecretion is not the same as so called carcinoid syndrome found in other gastrointestinal NETs. Many people with a Gastric NET will already have acid reflux related issues and many will be taking medications such as proton pump inhibitors. But I was surprised to find there was not an approved targeted medication that aims to decrease gastrin levels. It's true to say that somatostatin analogues (SSA) inhibit the secretion of many NET associated hormones including gastrin but SSAs are not routinely prescribed for…

12Mar 2023 by Ronny Allan No Comments

A Newsletter from RonnyAllan.NET – 13th March 2023

Awareness, Newsletters

Newsletter from Ronny Allan - 13th March 2023 Welcome to my new template newsletter compiled using WordPress (my blog app). This is the 2nd in this format, and I will continue in the absence of a Newsletter app that meets my needs. It's been another busy month as you will see below. But please take the time to read through as I can almost guarantee there will be something you missed and want to read and share! Some of the items below will make you laugh but others may make you cry. Latest Blog Posts My award-winning blog is central to everything I do, without it, there is no Facebook, twitter or private group. It follows that supporting my blog is also supporting those other outlets. The widget below displays…