Ronny Allan’s weekly roundup – 23rd – 29th September 2024
Weekly roundup 23rd - 29th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/29/f-you-cancer-im-still-here/ https://ronnyallan.net/2024/09/28/cessation-of-somatostatin-analogues-after-prrt-in-mid-hind-gut-and-pancreatic-neuroendocrine-tumours-stopnet/ https://ronnyallan.net/2024/09/25/sometimes-you-gotta-climb-that-hill-even-if-you-dont-want-to/ https://ronnyallan.net/2024/09/24/i-am-not-a-zebra/ https://ronnyallan.net/2024/09/24/weekly-roundup-from-ronny-allan-16th-22nd-september-2024/ https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to browse my website Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my blogs…
F*** you cancer, I’m still here!
On 26 July 2010, had you said I'd be writing this 14 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…
Cessation of Somatostatin Analogues After PRRT in Mid, Hind-Gut and Pancreatic Neuroendocrine Tumours (STOPNET)
One of the common question areas I see in my patient group of 10,000+ members is about the use of somatostatin analogues (SSAs) prior to, during and after treatment with Peptide Receptor Radionuclide Therapy (PRRT). On a similar subject, I also see people asking about stopping SSAs long term regardless of PRRT, particularly if they are NED and stable. People also ask about individual patients who have decided to stop them and how they managed etc. Clearly these are difficult discussions and anyone reading should be listening to their doctors, not mimicking what they read on patient groups. But they are…
Sometimes you gotta climb that hill, even if you don’t want to
When I was diagnosed, I was very compliant with my doctors and nurses. Whatever test they wanted, I'd cooperate. Whatever hurdle they wanted me to jump over, I would jump. I always had questions though, I find an inquisitive mind helps with coping. That's not to say I enjoyed each experience but what I knew it was required to move onwards to the next step - everything was on the critical path. In particular, the liver biopsy was a challenge but totally necessary to get to the diagnosis which would then dictate treatment and prognosis. Surgery for Stage IV small intestine…
I am not a zebra
One thing I've discovered when posting about this subject..... I'm not alone. In fact, I was actually surprised how many people cannot abide the infatuation with black and white striped animals eminating from certain parts of the NET community (incuding certain doctors). The main issue I have within the NET communiity is that it's based on 1940s thinking and in the days when science and statistics were not advanced as they both are today. Certain countries, organisations and individuals focus on this more than others, perhaps they're just out of date or quite like being part of the 'cult of…
Weekly Roundup from Ronny Allan – 16th – 22nd September 2024
Weekly roundup 16th - 22nd September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Click picture to subscribe New or Republished Blog Posts this week https://ronnyallan.net/2024/09/22/dont-be-underactive-with-your-thyroid-surveillance https://ronnyallan.net/2024/09/21/weekly-roundup-9th-15th-september-2024/ https://ronnyallan.net/2024/09/20/cabozantinib-for-advanced-neuroendocrine-tumours-another-tool-in-the-treatment-toolbox/ https://ronnyallan.net/2024/09/19/childhood-cancer-awareness-month-neuroendocrine-cancer-featuring-elizabeths-story/ https://ronnyallan.net/2024/09/19/the-trouble-with-the-net-it-can-spread-false-hope/ My Facebook Activity Page Neuroendocrine CancerThis is my biggest and oldest page, mostly generating blog posts for reading and sharing Click the graphic to read and share the post Page Ronny AllanThis is a personal themed page but also posts blogs. Follow this page for my…
Don’t be underactive with your Thyroid surveillance
From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement. One month after taking these drugs, my thyroid…
Weekly Roundup 9th – 15th September 2024
Weekly roundup 9th - 15th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Latest Blog Posts My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group. It follows that supporting my blog is also supporting those other outlets. Click on the 4 blogs below published over this period. https://ronnyallan.net/2024/09/09/weekly-round-up-2nd-8th-september-2024/ https://ronnyallan.net/2024/09/10/ever-wonder-what-caused-your-neuroendocrine-cancer/ https://ronnyallan.net/2024/09/11/neuroendocrine-cancer-turn-surveillance-into-a-positive/ https://ronnyallan.net/2024/09/15/eat-that-doughnut/ Blog posts currently trending (last 48 hours) My Facebook Acivity Public Page…
CABOMETYX® (cabozantinib) for pNET and epNET
18th October 2025. Exelixis Announces Results from Subgroup Analysis of CABINET Phase 3 Pivotal Trial Evaluating CABOMETYX® (cabozantinib) in Advanced Lung and Thymic Neuroendocrine Tumors at ESMO 2025 | Exelixis, Inc. – CABOMETYX reduced the risk of disease progression or death by 81% versus placebo in patients with advanced lung or thymic neuroendocrine tumors (NET) – – The lungs are the second most common NET site of origin, yet limited treatment options are available Read announcement from Exelixis here. 23rd September 2025. UK MHRA grants marketing authorization Ipsen (Euronext: IPN) announced today that UK MHRA has granted marketing authorization for cabozantinib…
Childhood Cancer Awareness Month – Neuroendocrine Cancer featuring Elizabeth’s story
September is Childhood Cancer Awareness Month! The newspapers and social media have been featuring many childhood cancer articles. It's known that NENs do occur in childhood, particularly those associated with familial/hereditary syndromes including (but not limited to), Multiple Endocrine Neoplasia (MEN), hereditary Pheochromoctyoma/Paraganglioma (PPGL), familial medullary thyroid carcinoma (FMTC); Von-Hippel Lindau (VHL) syndrome. But I also see young people diagnosed with sporadic (not hereditary) appendiceal Neuroendocrine Tumours (NET), most often incidentially found following appendicitis investigations. There are very rare instances of sporadic findings in regular NENs of varying primary types (including Neuroendocrine Carcinomas (NEC)).I dedicate this post to Elizabeth Rooney…
The trouble with the NET is that it can spread ……. false hope
Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer and how to treat it can lead to needless worry and even hinder good prevention and treatment decisions. Even food and nutritional supplements fall into this area. I see these things frequently in my own community, I don't like and I try my hardest to avoid these myths appearing in my own patient group and on…
Eat that doughnut!
I was recently reminded of a post I wrote called "The Other 5 Es". I later changed the name to "The 6 Es". The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many. I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut". What I didn't confirm was that I was using a metaphor i.e.…
Neuroendocrine Cancer: turn surveillance into a positive
It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance (scans and other imaging, tests, etc) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more…
Ever wonder what caused your Neuroendocrine Cancer?
OPINION. When you're diagnosed, you go through a whole host of emotions. It's not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words "you have cancer", it's other stuff such as anger and denial. With the latter, the denial normally wears off as you finally accept the predicament. In hindsight, the anger is interesting because there can be a mixture of thoughts including "why me", "what could I have done to head this off"; and would you believe I was even angry that my diagnosis was going to affect my performance at work and…
Weekly round-up 2nd – 8th September 2024
Weekly round-up (2nd - 8th September 2024) News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Blog Activity My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group. It follows that supporting my blog is also supporting those other outlets. What's new between 2nd Sept and 8th Sept 2024? My 2024 experience with Hives but what were the likely cause(s) - read more here Invisible…
Don’t worry, it’s benign!
OPINIONOne of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question. It’s been widely debated, and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant.Any standard cancer nomenclature definition of the word 'tumour'…
Palliative Care – it might just save your life
When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example. Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared…
Active Surveillance May Benefit Certain Patients With Small Nonfunctional Pancreatic NETs
Abstract. Results from a retrospective review demonstrated significant increases in the use of observation in patients with small nonfunctional pancreatic neuroendocrine tumors (NF-pNETs) from 2015 to 2020, as published in JAMA Surgery. Researchers also found that patients seen at academic centers were more likely to undergo observation compared with those seen at nonacademic centers.Currently, experts are uncertain of the metastatic potential of NF-pNETs, and the potential morbidity linked with pancreatic surgery, as noted in the study. This may be associated with patients opting for surgery vs active surveillance, although recent guidelines endorse the use of active surveillance backed by retrospective data.The…
Neoadjuvant 177Lu-DOTATATE for non-functioning pancreatic neuroendocrine tumours (NEOLUPANET): multicentre phase II study
Abstract. NEOLUPANET was a multicentre, single-arm, phase II trial, conducted between March 2020 and February 2023 at eight Italian institutions. Patients- non-functioning pancreatic neuroendocrine tumours (NF-PanNETs) at high risk of recurrence, with positive uptake on 68Ga-labelled DOTA PET. They underwent neoadjuvant 177Lu-labelled DOTA0-octreotate (177Lu-DOTATATE) therapy followed by surgical resection at an acceptable complication rate, with no postoperative death. The majority of patients had a partial response without any progressive disease. Neoadjuvant means treatment given as a first step to shrink a tumour before the main treatment, which is usually surgery. NF-PanNETs are more common than their functional counterparts. NF-PanNETs display…
Tolerability and outcomes of neuroendocrine tumors treated with PRRT and SBRT
I've written about Peptide Receptor Radionuclide Therapy (PRRT) many times and also written summary of evidence of the use of Stereotactic Body Radiation Therapy (SBRT) in Neuroendocrine Neoplasms (NENs). The latter is external beam radiotherapy whereas the former is a totally different technique delivering radiation combined with somatostatin analogues via an intra-venous (IV) route. Both have the same aim, to eradicate or reduce tumour bulk. External beam (EB) has been around for some time but PRRT is relatively new. That said, EB in the form of SBRT is state of the art EB radiotherapy. I will link in those two blog…
Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)
Update 4th September 2024. I have been informed by a third party and trusted source that this upgrade to Lanreotide Ipsen injection device which I published in 2022, will not happen. Apparently, the project announced in 2022 never really got off the ground. My own guess is that Ipsen's business case expenditure was too much risk given the rise of the generic Lanreotide meds around the same time, i.e. the return of investment (ROI) would not be recouped.I do not understand why Ipsen did not offer a lower price to remain competitive in UK and elsewhere. It makes me think that…
Serotonin – it’s a no-brainer!
This post is based on my own research from authoritative sites, it is my interpretation. There is constant discussion about the effects of serotonin-producing tumours and issues of depression, anxiety, and 'rage'. However, it's a really complex issue for laypeople and I have no intention of trying to resolve it in this article. However, it's clear to me from listening and reading these discussions in patient forums for many years, that most of the discussion appears to be based on years of unsubstantiated and unmoderated debate inside patient forums without professional input. This is not an attempt to bash patient leaders…
Not every illness is visible
I personally don't see myself as 'disabled' but I do have an invisible illness. I can see it and I don't necessarily care if others don't. I'm fit, can walk for miles, I even look quite healthy. However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as 'disabled' through government schemes. Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That's not to say I don't have any issues at all - because I do!I…
Hives (urticaria) The NET Effect
Background to why I created this blog post. For many years, I've read numerous comments and posts where people mention hives (full medical term urticaria). As far as I know, this is an issue that has never bothered me all of my life ...... until recently. I've never had any allergies other than certain cats and dogs (....I guess there might be a connection there). I'm currently taking an anti-histamine tablet each day until the issue resolves. My normal reaction to these changes is to research, so here is my research! The response in patient groups to questions about hives…
Telotristat Ethyl (XERMELO) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues
Republished and reformatted and reviewed 1st September 2024. Original published 31st March 2016. What is Telotristat Ethyl?Telotristat Ethyl is a significant introduction to the treatment of Carcinoid Syndrome diarrhea. It's the first addition to the standard of care in more than 16 years and the first time an oral syndrome treatment has been developed. The drug was previously known as Telotristat Etiprate but was changed to Ethyl in Oct 2016. 'Etiprate' was previously a truncation of 'ethyl hippurate'. The brand name is XERMELO® Who is the drug for?The drug may be of benefit to those whose carcinoid syndrome diarrhea is not adequately controlled by somatostatin analogues…