The 6 E’s
An opinion postWhen I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after I…
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)
After years of avoiding pancreatic enzyme replacement therapy (PERT) since a 2010 diagnosis, I finally asked for some on a trial basis at the end of 2017. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I've always known I've had some digestive issues related to malabsorption. However, I'm wasn't losing weight - this has been stable for some years (but see below). Plus, my key vitamin levels (B12 and D) were in range. However, I had been struggling with a lot of bloating issues, thus…
The Other 5 E’s by Ronny Allan
I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say, "I can't" than it is to say, "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So, this is the story of my daytrip at the end of summer (and pretty much many days out). The 5 EsThose who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story…
Don’t believe the hype – Neuroendocrine Cancer Myths debunked
Edited and refreshed 17th November 2024OPINION There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasiseSimply untrue. They are a heterogeneous group of tumours. Read more hereMyth 2: All Neuroendocrine…
Ronny Allan’s ‘PoNETry’ – An Ode to Lanreotide
Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I also have one on Invisible Illness - click here Click here and answer all questions to join my private Facebook group Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’ Sign up for my newsletters - Click Here Disclaimer My Diagnosis and Treatment History Follow me on twitter Check out my online presentations Check out my WEGO Health Awards Like my new awareness…
Lanreotide and Keytruda – the PLANET study (NCT03043664)
Update 13th February 2025. In my main coverage of Immunotherapy for Neuroendocrine Neoplasms (NENs), you will see a section where one NET specialists described Neuroendocrine Tumours as an “immunological desert”. What was meant by is that there’s little evidence immunotherapy is effective in the majority of Neuroendocrine Tumours (NETs). The output from this trial continues to back that view. It is important to note the nomenclature of NETs rather than NENs as almost all the immunotherapy drug approvals to date have been for Neuroendocrine Carcinomas (NECs). As the trial abstract conclusion said, "We conclude that immune checkpoint blockade had low…
Phase 3 Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs
Update - 13th November 2025. ITM Announces FDA Acceptance of New Drug Application (NDA) and PDUFA Date for n.c.a. ¹⁷⁷Lu-edotreotide (ITM-11) in Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs)Garching / Munich, Germany, November 13, 2025 - ITM Isotope Technologies Munich SE (ITM), a leading radiopharmaceutical biotech company, today announced that the U.S. Food and Drug Administration (FDA) completed its filing review and accepted the company’s New Drug Application (NDA) for n.c.a. 177Lu-edotreotide (also known as ITM-11 or 177Lu-edotreotide). 177Lu-edotreotide is ITM’s proprietary, synthetic, targeted radiotherapeutic investigational agent for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). The FDA has set a Prescription Drug User Fee Act (PDUFA) goal date…
Ronny Allan – Every picture tells a story
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s),…
Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide
Updated and reviewed 15th January 2025. Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved. So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone overscretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors. They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed.Somatostatin is actually a naturally occurring hormone produced by the…
Neuroendocrine Cancer – If you can see it, you can detect it!
Updated December 2025BackgroundScanning is a key diagnostic support and surveillance tool for any cancer. Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer.When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan might resolve this' and…
In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life
Originally published March 2017 OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…
Targeted Alpha-emitter Therapy (TAT) – the wave of the future in nuclear oncology/PRRT?
What is Targeted Alpha-emitter Therapy?Regular PRRT which is authorised for use now, i.e. Lutathera/Lu177 is a beta therapy. Targeted Alpha Therapy is based on the coupling of alpha particle emitting radioisotopes to tumour selective carrier molecules, such as monoclonal antibodies or peptides. These molecules have the ability to selectively target tumour cells even if they are spread throughout the body. They recognize the targeted cancer cells through antigens that are expressed on the cell surface and can bind selectively to these cells, similar a key fitting into a lock. In targeted alpha therapy these carrier molecules serve as vehicles to…
Neuroendocrine Tumour (NET) – don’t let it be a Crisis
Update November 2025. This new document from the same surgeon and NET team below has further justified why they now adopt a totally different approach to nearly everyone else and they can back it up with evidence. This followed the updated blog below "Do we need a new model for carcinoid crisis in NETs?". It looks like they have deployed this 'new model' given their statement "Based on our research, at Oregon Health & Science University, we have entirely stopped using octreotide during operations, relying instead on vasopressors and treatment directed at managing distributive shock". Worth a read. Intraoperative Carcinoid…
Weight – the NET Effect
ForewordAfter my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment.Fast forward 4 years, I had to buy some more suits as my weight was going back on.Fast forward 14 years and my weight is…
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…
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…
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…
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…
Chemo or not Chemo – that is the question
I often see certain drugs for the treatment of Neuroendocrine Tumours (NETs) described as "chemotherapy". Although since I wrote the first edition of this post in 2016, I don't see it as much today in 2024. Education is a wonderful thing! I think there must be some confusion with more modern drugs which are more targeted and work in a different way to Chemotherapy. According to Mayo Clinic: "In many ways, cytotoxic chemotherapy is "targeted" at specific molecules that regulate progression through the cell cycle; however, these targets are generally not specific for tumor cells. Because systemic cytotoxic chemotherapy targets…
Neuroendocrine Cancer – it takes guts
The majority of Neuroendocrine Tumours (NETs) are slow growing (well differentiated). However, many tumours can be silent (non-functioning) for some years before they start to 'function' and inform you of their presence. Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments. Moreover, in most cases, the appearance of a functional tumour often indicates the disease has metastasised and could now be incurable. Some tumours will grow and metastasise without syndromes, i.e. they are non-functional. These may become functional at some point in the future. However, with most slow-growing NETs, this…
Neuroendocrine Cancer: Glossary of Terms
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 database:1. If your term begins with an A, click on A to find all terms beginning with A. Select your terms beginning with A from the filtered list.2. For numerical terms (e.g. 5HIAA etc), 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…
Lanreotide for Lung NETs – SPINET Clinical Trial
Reviewed and updated 30th July 2024. Phase III trial data update. Update 30th July 2024. This trial had a low particpation repsonse. Experts cited the main reason was the increasing use of SSAs for Typical and Atypical Lung NETs in clinical practice; as such, patients were reluctant to enroll in this study, with the risk of receiving a placebo, when they could access the active treatment with a prescription. The above is unfortunate but perhaps the wording of some approvals caused confusion about scope. Together with pragmatic compassionate use in cliniclal practice this has perhaps had an adverse affect in…
Diabetes – The NET Effect
Originally published September 2018. Updated July 2024My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream.Bubbling behind the scenes and clamouring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes One of my followers…
Neuroendocrine Cancer – the diarrhea jigsaw
Reviewed and updated 5th July 2024Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.There are other reasons that might be causing or contributing, including (but not limited to) endocrine…
Neuroendocrine Cancer – not average, just mean
Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene. Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of…
Somatostatin Receptors
Don't understand Somatostatin Receptors? Join the club! I got my head around the term 'Somatostatin' and 'Somatostatin Analogues' some time ago but the term 'Somatostatin Receptor' (SSTR) is still a bit of a mystery. SSTRs do come up in conversation quite often and I'm fed up of nodding sagely hoping it will eventually become clear! On analysis it looks like a technical subject - and therefore a challenge.I've taken a logical approach working from 'Somatostatin' to 'Somatostatin Analogue' before commencing on the 'receptor' bit. It is intentionally brief and (hopefully) simplistic!SomatostatinIt's important to understand this hormone and then why your…
Metastatic Neuroendocrine Tumours – Incurable but treatable
Metastatic Neuroendocrine Tumours - incurable is not untreatable. When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able…
The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis
Updated 14th June 2024 The Syndromes of Neuroendocrine Cancer - Early Signs of a Late Diagnosis There are some curious things about Neuroendocrine Cancer (NETs elsewhere in the text on the basis that a hormonal syndrome is extremely rare in Neuroendocrine Carcinoma (NEC)). One of them is that it can very often exhibit one or more vague symptoms collectively known as a 'syndrome'. Syndrome is an apt word to describe these complications as the most general meaning in medical terms is a group of symptoms that together are characteristic of a specific disorder or disease". Having a syndrome can often…
Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?
Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought? Reviewed and updated 23rd January 2024 Background Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (listed below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another. Often the the best diet…
Neuroendocrine Cancer: My experience with Lanreotide Ipsen
On 9th December 2024, I celebrated 14 years of Lanreotide - click here to read about that. Update 11th Jan 2024. Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen. Clearly to distinguish its product from the generics now rolling out. Not seen similar yet for Somatuline Depot (US). My Lanreotide Experience When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as…
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that…
“You must be doing OK, you’ve not had chemotherapy”
If there's a word which is synonymous with cancer, it's chemotherapy. It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'.I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease. Cue - lengthy explanation! I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of cytotoxic chemotherapy. If you read any newspaper article about cancer,…
Neuroendocrine Cancer – don’t break my heart!
Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome. Some doctors may refer to this as a functional tumour. Neuroendocrine Tumours secreting excess amounts of serotonin sufficiently to develop a syndrome currently called Carcinoid Syndrome, which if not diagnosed and treated early enough, or the levels of serotonin ae not controlled following diagnosis, can lead to an additional complication known as Hedinger Syndrome (also known as Carcinoid Heart Disease (CHD)). However, late diagnoses can present with CHD already in place and in some cases, may have led to…
I look well but you should see my insides
I'm sat next to patients waiting on their chemotherapy treatment - the "Chemo Ward" sign above the door gives it away. I'm here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay. I look all around; the temporary beds and the waiting room are full and all I can see are people who don't look as well as I do. Some have hats or bandanas partly disguising the loss of hair. I feel for them.No matter how many visits I make, I can't help feeling out of place in a Cancer ward. I'm not…
Surgery for NETs – Chop Chop
May 2024. a refurbish from some of my early work in 2015. I'm fairly sure not a lot has changed in surgery over the years. At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other…
Chemotherapy for Neuroendocrine Cancer
Edited and checked April 2024 One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a 'standard of care' or first-line treatment, unlike many other cancers. One exception is high grade (Grade 3) where it is very often a first and/or second-line therapy. This is particularly the case with poorly differentiated Neuroendocrine disease, by default labelled as Neuroendocrine Carcinoma (NEC). Many people think Chemotherapy has a short life span due to recent advances in medical science, some citing Immunotherapy as its replacement. However, it's far too early to write off chemotherapy which is still…
Sequencing of Somatostatin-Receptor–Based Therapies in Neuroendocrine Tumor Patients
There can be no doubt that the discovery of somatostatin receptors as a means to treat Neuroendocrine Tumours has been a huge success. Additionally, scientists looked at a theranostic angle and provided somatostatin receptor based imaging for diagnosis and surveillance purposes. Many patients are prescribed somatostatin anlaogues shortly after diagnosis and this has led to a reduction in the morbidity that comes from active carcinoid syndrome and has reduced the incidence of carcinoid heart disease. More recently, the introduction of somatostatin receptor based PETs, taking over from the elderly Octreotide scans, has meant speedier and higher quality identification of NETs…
Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome
Update 25th September 2025 - CrineticsCrinetics Announces FDA Approval of PALSONIFY™ (paltusotine) for the Treatment of Acromegaly in Adults- September 25, 2025Read more - click here. Learn more about PALSONIFY BY clicking here. Note: Approval of somatostatin analogues for acromegaly normally precedes approval for NET. UPDATE 14th March 2024Results from Paltusotine CarcinoidSyndrome Open Label Phase 2 Study, A Randomized, Parallel Group Study to Evaluate the Safety, Pharmacokinetics, and Dose Response of Paltusotine Treatment in Subjects with Carcinoid SyndromeHeadline:EFFICACY FINDINGS: Rapid and Sustained Reductions in Patient SymptomsSAFETY: Once Daily Oral Paltusotine Showed Positive Results inCarcinoid Syndrome PatientsEfficacy and safety findings support progressing to a…
I woke up on World Neuroendocrine Cancer Day
1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery 15 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. …
Systemic Treatments for Advanced, Well-Differentiated, Small-Bowel Neuroendocrine Tumors That Progress on Somatostatin Analogues
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jonathan Strosberg is another favourite of mine, not only because he is a prodigious researcher, writing and helping to write various studies on NETs. Plus, I've actually met him!Jonathan R. Strosberg, MDProfessor of Gastrointestinal OncologySection Head, Neuroendocrine Tumor DivisionChair, Gastrointestinal Department Research ProgramMoffitt Cancer CenterTampa, FLThe discussion is centred on the following statement and questionSmall-bowel neuroendocrine tumors (NETs) will…
My treatment is a pain in the butt!
This title is a bit 'tongue in cheek' (....did you see what I did there?) I'm very happy to have had treatments for my stage IV cancer, I can think of far worse scenarios.When I was first diagnosed, the dreaded word 'Chemo' was discussed. Actually, Chemo isn't particularly effective in treating low grade Neuroendocrine Cancer, although I've heard of cases where it has made a difference. It's mainly used in high grade (Grade 3) but also in Grade 2, particularly at the higher end of the grading scale of KI67/Mitotic Count. I was pleased later when that was dismissed as…
My stomach sometimes cramps my style
When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!). In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'. Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......). This major undertaking was within 4 years of my diagnosis and within two years of 3 surgeries and I was borderline stable. I wanted to get it done while I was able! As a Cancer patient, there were some…
Just got (a) shot in the buttocks
I love watching films and Tom Hanks is one of my favourite actors. He's played such a wide range of parts and I've found every single one of his films enjoyable. I think the first one I remember was 'Big' - a cracking family film for all ages. When I saw the large floor piano keyboard in Schwartz toy store in New York, I had to give it a go (video or photo to follow if I can find it!). On the opposite side of the scale, he's also been in some quite gory films such as 'Saving Private Ryan'…
Lanreotide: Ipsen injection devices vs generic injection devices
Update 7th September 2024 Following the US FDA approval of Cipla Lanreotide in 2021 using a Pharmathen syringe device (same as currently used by generic versions of Lanreotide in Europe), Cipla have now announced a generic version of their original FDA approval via an Abbreviated New Drug Application (ANDA) for Lanreotide Injection 120 mg/0.5 mL, 90 mg/0.3 mL, 60 mg/0.2 mL subsequently approved by the United States Food and Drug Administration (USFDA). Cipla’s 2024 Lanreotide Injection is AP-rated therapeutic equivalent generic version of Somatuline® Depot (lanreotide) Injection. I am in US, can I get this generic Lanreotide? That is a…
RonnyAllan.NET – a review of 2022
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…
Clinical Trial: Mycapssa (octreotide capsules) for Neuroendocrine Tumours (drug discontinued, clinical trials cancelled – at least in EU countries)
UPDATE 26 February 2025 The European Commission withdrew the marketing authorisation for Mycapssa (octreotide) in the European Union (EU). The withdrawal was at the request of the marketing authorisation holder, Amryt Pharmaceuticals DAC, which notified the European Commission of its decision to permanently discontinue the marketing of the product for commercial reasons. Mycapssa was granted marketing authorisation in the EU on 2 December 2022 for the maintenance treatment in adult patients with acromegaly who have responded to and tolerated treatment with somatostatin analogues. The marketing authorisation was initially valid for a 5-year period. The marketing authorisation holder has committed to ensure that patients who are receiving treatment with…
Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021
Background. For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors. There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com)…
Let’s Talk About NETs (#LetsTalkAboutNETs)
I do a lot of writing about NETs but I guess I've also done some talking too. Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings. Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides. Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal. I will keep adding them so they're all in one place. Published TalksAnn Edgar Trust - 31st August 2022I was invited by Gordon Mackay who runs…
Generic Somatostatin Analogues for Neuroendocrine Cancer
Generic Somatostatin Analogues. I've covered a lot about somatostatin analogues, particularly the two predominant approved drugs Lanreotide and Octreotide. Recently I found there are some for octreotide and as of Jul 2021, at least one for Lanreotide and is increasing. The reason for publication of this blog is because I was concerned to hear patients asking questions about generic lanreotide and octreotide in my private Facebook group where they were suggesting they could be of lesser quality. I studied that in more detail and here are the results of that research. What are generic drugs? Primer Companies take out exclusive rights…