Advanced neuroendocrine cancer - Ronny Allan - Living with Neuroendocrine Cancer

09Nov 2023 by Ronny Allan 6 Comments

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

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…

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,…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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]…

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…

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…

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…

09Mar 2023 by Ronny Allan 1 Comment

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials and Research, Inspiration

It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that. But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease. There are others but I find these are the most common scenarios I see in younger people. For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to write about one of the latter scenarios, a younger than average person with an aggressive version of our disease and one that eventually was the cause of her death. It…

19Feb 2023 by Ronny Allan 6 Comments

Sometimes I climb hills just to piss my cancer off

Inspiration

Pissing off cancer is both metaphorical and physical Being diagnosed with a Grade 2 metastatic Neuroendocrine Cancer in 2010 was a bit of a shock. I didn't feel ill enough to have a stage IV cancer. At first, I just kept working thinking this was 'something and nothing' and normality would return in due course. Optimum and realism sometimes conflict but I eventually found myself in the middle of both, tweaking the path as I went along it. Occasionally, my path took me upwards and downwards in a metaphorical sense and with advanced cancer, sometimes a metaphorical hill climb is necessary but needs motivation. I do a lot of walking and climbing hills is not easy when your get older, but the motivation is often there. I do believe there…

18Feb 2023 by Ronny Allan No Comments

Belzutifan for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), or Von Hippel-Lindau (VHL) Disease-Associated Tumors

Clinical Trials and Research, Treatment

What is von Hippel-Lindau disease (VHL)?Von Hippel-Lindau disease (VHL) is an autosomal dominant disease that can predispose individuals to multiple neoplasms. Germline pathogenic variants in the VHL gene predispose individuals to specific types of benign tumors, malignant tumors, and cysts in many organ systems. These include central nervous system hemangioblastomas; retinal hemangioblastomas; clear cell renal cell carcinomas and renal cysts; pheochromocytomas, cysts, cystadenomas, and neuroendocrine tumors of the pancreas; endolymphatic sac tumors; and cystadenomas of the epididymis. What is Belzutifan (Welireg)?It is an oral hypoxia-inducible factor-2 alpha (HIF-2α) inhibitor. As an inhibitor of HIF-2α, belzutifan reduces transcription and expression of HIF-2α target genes associated with cellular proliferation, angiogenesis and tumor growth.On August 13 2021, FDA approved belzutifan (Welireg) to treat adults who have several tumors associated with VHL. Specifically, the drug is approved to treat VHL-associated renal cell carcinoma (a type of kidney…

03Jan 2023 by Ronny Allan 2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, Treatment

ReviewIn 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost. It takes 3-4 years to get a million hits based on current performance. To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened! I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal but 2022 has seen some pickup. Some of it is due to less writing but much is due to a change in Facebook algorithms which affected many ‘pages’ reducing their scope (the more cynical might say it was done to drive advertising revenue but …….). 2022…

26Dec 2022 by Ronny Allan 8 Comments

Piss off cancer – 12 years of Christmas and I’m still here!

Awareness, Inspiration

12 Christmas celebrations since diagnosis and I'm still here. My Facebook memories today are full of Christmas day activities including my first Christmas after diagnosis and major surgery in 2010. I remember the whole of my own family attended, my son and daughter's families and 3 grandsons (I now have 4 💜). The main thing I remember was falling asleep after the dinner and I suspect it was due to post-surgical fatigue plus ongoing issues with low haemoglobin and B12 and a long shot - an infusion of tryptophan from the meal 😏 My Facebook memory from today 12 years ago, involves the film Avatar, known for its special effects. It had a special effect in that I saw the first 30 minutes and the last 10 minutes 😊 It…

08Dec 2022 by Ronny Allan No Comments

Lanreotide: 12 more years

Inspiration, Treatment

I once wrote a blog entitled "Four more years". I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times). As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views. I can tell you now, it worked as I still get hits today from unsuspecting political buffs! I've since written updates at the 11-year point and will update you each year. This year I wanted to recount my story about the events leading up to Injection 1 on 9th December 2010. 9th December 2010I was at home recuperating from major surgery wondering what the next event in my surveillance and treatment…

27Nov 2022 by Ronny Allan 5 Comments

Metastatic Neuroendocrine Cancer: Incurable isn’t always terminal

Awareness, Patient Advocacy

Opinion Words are important I was diagnosed with stage IV cancer in 2010. OK, it wasn't a really aggressive type, but it had caused a lot of damage. It's amazing to think that someone is still adding to their stage IV cancer story since diagnosis of "incurable cancer". You can read a chronological list of what happened to me and what treatment I had (and still get) by clicking here. So, am I terminal? No, in my opinion, and by any stretch of the imagination, someone who has lived with stage IV cancer for 13 years (2023) cannot be considered terminal. Let's look at some definitions which are generally agreed with similar wording wherever you look: Terminal Cancer Terminal cancer refers to cancer that can’t be cured or treated. It’s…

18Nov 2022 by Ronny Allan 1 Comment

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient Advocacy

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions to very aggressive versions similar to many dangerous adenocarcinomas. Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex…

07Nov 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: Beware But Be Aware

Awareness

An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer. Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.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 systems. It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones, and any…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

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

Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list:1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list.2. For numerical terms, please click on the hashtag (#) symbol in the A-to-Z strip.3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary, and ensuring all definitions are…

19Sep 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Inspiration, Patient Advocacy

Self Pity or Self Help? I'm not one for wallowing in self-pity or accepting invites to pity parties. It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in the world because I'm known for helping. I admit that some people are beyond my type of help, but I always suggest they should speak to specialists in the area…

14Sep 2022 by Ronny Allan No Comments

Clinical Trial: Phase 1b/3 Targeted Alpha-Emitter PRRT RYZ101 (Ac225)

Clinical Trials and Research

Update 31st May 2023 - RayzeBio doses first patient on Phase 3 ACTION-1 Study, Evaluating RYZ101 (Actinium-225 DOTATATE) in Neuroendocrine Tumors RayzeBio, Inc., a targeted radiopharmaceutical company developing an innovative pipeline against validated solid tumor targets, today announced that the first patient has been dosed in the Phase 3 trial of RYZ101 in patients with SSTR+ gastroenteropancreatic neuroendocrine tumors (GEP-NETs) that have progressed following prior Lutetium-177 labelled somatostatin analogue therapy. “Patients with GEP-NETs have very limited options upon progression after Lutetium-177 labelled somatostatin analogue therapy,” said Dr. Thomas Hope, M.D., Vice Chair of Clinical Operations and Strategy in the Department of Radiology. “With existing results using Actinium-225 DOTATATE suggesting clinical benefit, we are excited to be moving this therapy forward in the ACTION-1 study.” The Phase 3 trial is…

23Aug 2022 by Ronny Allan 1 Comment

Neuroendocrine Cancer: At least 50 shades of grey

Awareness, Patient Advocacy

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............". The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy.And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only one syndrome. Once again, this is partly related to the lingering use of the term Carcinoid. However, while I applaud national and international NET foundations for providing GP (PCP) with symptom lists, they are…

05Aug 2022 by Ronny Allan No Comments

Curtis Crump: “If I’m going down, it won’t be without a fight.”

Clinical Trials and Research, Inspiration, Patient Advocacy, Survivorship

Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell. Given 6 months to live, he refused to accept that prognosis and looked elsewhere. He found a top hospital that directed him to an established clinical trial. Although the story I am attaching says "Neuroendocrine Tumors" throughout, with that prognosis and the treatment he received (chemotherapy and immunotherapy), I'm reasonably confident he had a Neuroendocrine Carcinoma (Colon primary) or a Grade 3 Well Differentiated NET. Nonetheless, his story is relevant to many people's experiences across the broad spectrum of Neuroendocrine Neoplasms (NENs). And if I am right in my assumption, even with a poorly differentiated type, there is the hope of a better prognosis. Wishing Curtis the very best. Read his story below.(Please see my disclaimers…

26Jul 2022 by Ronny Allan 14 Comments

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

I finally made 12 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 47 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 Neuroendocrine Tumours, it had caused a dense fibrotic reaction…

20Jul 2022 by Ronny Allan No Comments

Assessment of Clinical Response Following Atezolizumab and Bevacizumab Treatment in Patients With Neuroendocrine Tumors: A Nonrandomized Clinical Trial

Clinical Trials and Research

BackgroundWell differentiated NETs have been described as an "immunological desert" in recent years mainly due to the poor response rate data coming out of clinical trials of immunotherapy drugs. Poorly differentiated NEC has favoured better but mainly in the more obscure types. Which is why these data of a combo treatment containing one immunotherapy drug caught my eye. What is atezolizumab? It is a type of monoclonal antibody and a type of immune checkpoint inhibitor. It's a Programmed cell death protein -1 (PD-1)/ Ligand 1 (PD-L1) inhibitor. A drug that binds to the protein PD-L1 to help immune cells kill cancer cells better and is used to treat many different types of cancer, including cancers that express PD-L1. Atezolizumab is used alone or with other drugs to treat certain types of…

19Jul 2022 by Ronny Allan 3 Comments

Neuroendocrine Cancer: diagnostic dilemmas in July 2010

Awareness

Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010. I guess one of the reasons I do this is to be thankful that I'm still alive but also, I have a sneaking suspicion that I'm still trying to remember small detail from that period. It had felt surreal ever since 8th July when the secondary care investigating doctor sent me for a CT scan leading to a biopsy on 19th July. That scan and subsequent biopsy were to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just something chipping away over the years. My diagnostic triggers were incidental in many ways and a reaction to me telling a GP Nurse that I thought I'd lost a bit…

15Jun 2022 by Ronny Allan No Comments

CAPTEM for Neuroendocrine Tumours

Clinical Trials and Research

What is CAPTEM? Capecitabine is an oral drug used alone or with other drugs to treat certain types of colorectal cancer and breast cancer. It is also being studied in the treatment of other types of cancer including in combination with a second drug. Capecitabine is taken up by cancer cells and breaks down into fluorouracil, a substance that kills cancer cells. Xeloda is a type of antimetabolite. Also called Xeloda.Temozolomide is an oral drug used to treat adults with certain types of brain tumors. It is also being studied in the treatment of other types of cancer including in combination with a second drug. Temozolomide damages the cell’s DNA and may kill cancer cells. It is a type of alkylating agent. Also called Temodar.Capecitabine (brand name Xeloda) plus Temozolomide (brand…

08Apr 2022 by Ronny Allan 1 Comment

My illness may be invisible, but I am not – Neuroendocrine Cancer

Awareness, Living with Neuroendocrine Cancer, Survivorship

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years before making a vague announcementI had no idea the cancer was growing in me for years. Perhaps some of my routine illnesses weren't as routine as I thought. Sorry too late, I'm metastatic,…

20Jan 2022 by Ronny Allan 3 Comments

External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

Patient Advocacy, Treatment

Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of candidates and predictions on who will benefit most are still not an exact science (....and possibly never will be). Neuroendocrine Neoplasms are a heterogenous grouping of cancers, and heterogeneity also includes (but is not limited to) age, stage, gender, functional/non-functional, and pre-existing condition constraints. All of this complicates the task of therapeutic decision-making and sequencing. The attached cohort study aims to bound the issue and describe a method of allocating a Clinical Score (CS) to assist doctors and patients in their decision-making. According to the lead author, the CS is the initial prognostic score to help NET patients anticipate expected benefit from PRRT and is…

Tag: Advanced neuroendocrine cancer