Carcinoid tumour Archives

17 Oct 2022

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Evolving Approaches in the Management of Neuroendocrine Tumor-Associated Carcinoid Syndrome

Patient Advocacy, TreatmentCarcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Neuroendocrine tumour (NET)

Introduction I found these 10 short video series from OncLive very useful. Each video ranges from 2 - 5 minutes long and is very easy to watch and digest. Not only a succinct primer on (so-called) carcinoid syndrome but also an update on the evolving approaches. And the series also includes information on Hedinger Syndrome (carcinoid heart disease) which can be caused by the effects of this syndrome. The panel includes some 'big hitter' names in our scientific community including: Satya (Nanu) Das, MD, MSCI (Oncologist) Jerome Zacks, MD (Cardiologist) Rodney Pommier, MD (Surgeon) Video list (click on the blue…

17 Oct 2021

By Ronny Allan

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In the land of small tumours, there is still a lot of work to do!

Awareness, Clinical Trials and Research, Patient Advocacy, TreatmentCarcinoid, Carcinoid tumour, Neuroendocrine tumour (NET)

I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1). He always delivers with "enthusiastic vigour", a term he reduces to "brio" (which I had to google!)His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors". He quotes from a…

11 Sep 2021

By Ronny Allan

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Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials and Research, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Biopsy, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Diagnosis, Everolimus, Ga68 PET/CT, Immunotherapy, Incurable cancer, Lanreotide, Liver embolization, Lung NETs, Lutathera, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Octreotide, Pancreatic NET (PanNET), Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues, Sunitinib (Sutent), Surufatinib, Targeted alpha-emitter therapy (TAT), Targeted therapy

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)…

22 Oct 2020

By Ronny Allan

2 Comments

Early diagnosis of late stage cancer!

AwarenessAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, NET syndromes, Serotonin

OPINION: What a strange title for a cancer blog post! However, what a strange cancer I have. Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor. To cut a long story short, you can read about me here."The cancer has been growing for years"One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in most cases. I'm fairly certain my surgeon…

09 Nov 2019

By Ronny Allan

3 Comments

“Please find something wrong with me”

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Pheochromocytoma

I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common…

24 Sep 2019

By Ronny Allan

1 Comment

Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Carcinoid tumour, Clinical trial, Incurable cancer, Medullary thyroid cancer (MTC), Merkel cell carcinoma, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Paraganglioma, PEN-221, Pheochromocytoma, Small cell lung cancer (SCLC), Somatostatin receptors (SSTR)

What is PEN-221?Tarveda Therapeutics is discovering and developing a new class of potent and selective precision oncology medicines for the treatment of patients with various solid tumor malignancies. Their strategy includes developing their own proprietary Pentarin miniature conjugates to enhance the effectiveness of promising anti-cancer payloads that have struggled without their selective targeting to solid tumors. These medicines are known as 'Pentarins'. PEN-221 is the lead candidate 'Pentarin' aimed at Neuroendocrine Cancer - PEN-221.Somatostatin receptor 2 (SSTR2) is frequently overexpressed on several types of solid tumors, including neuroendocrine tumors and small-cell lung cancer. Peptide agonists of SSTR2 are rapidly internalized…

09 Sep 2019

By Ronny Allan

0 Comments

Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Carcinoid tumour, Clinical trial, Dopamine receptors, G protein-coupled receptors (GPCR), Hypertension, Incurable cancer, Leukaemia (US Leukemia), Lymphoma, Metastatic Neuroendocrine Cancer, Multiple myeloma, Neuroendocrine cancer, Neuroendocrine tumour (NET), ONC201, Paraganglioma, Pheochromocytoma, Solid tumour

What is ONC201?A company called Oncoceutics is developing a novel class of safe and effective cancer therapies called imipridones. Imipridones have a unique three-ring core structure and selectively target G protein-coupled receptors (GPCRs), the largest class of membrane receptors and a common target of approved drugs that are underexploited in oncology. Despite being historically uncommon as targets in oncology, GPCRs control an array of critical prosurvival and stress signaling pathways that are often dysregulated in human cancer to favor cancer cell survival and propagation.The ability of imipridones to target GPCRs with a high degree of selectivity represents a novel opportunity…

29 Jul 2019

By Ronny Allan

0 Comments

Surufatinib for Neuroendocrine Cancer

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Afinitor, Biliary tract cancer, Carcinoid tumour, Clinical trial, Colony stimulating factor-1 receptor (CSF-1R), Fibroblast growth factor receptor (FGFR), Incurable cancer, Mammalian target of rapamycin (mTOR) inhibitor, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Sulfatinib, Surufatinib, Tyrosine kinase inhibitor (TKI), Vascular endothelial growth factor (VEGF)

UPDATE 2nd May 2022.US FDA did not approve. Commentary from Healthcare New company Global Data. "On 2 May, the US Food and Drug Administration (FDA) rejected HUTCHMED’s new drug application (NDA) for its lead candidate, Sulanda (surufatinib), for the treatment of advanced neuroendocrine tumours (NETs). Issues pertaining to trial populations were raised in a complete response letter (CRL) and GlobalData expects this case to have wide implications for the whole field of oncology therapeutics.China-based HUTCHMED received approval for its multi-receptor tyrosine kinase inhibitor Sulanda in China for the treatment of pancreatic and extra-pancreatic NETs in June last year and December 2020,…

05 Feb 2019

By Ronny Allan

1 Comment

Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

The NET Effect Series, TreatmentAcid reflux, Antiacids, Axid (Nizatidine), Barrett's Esophagus, Carcinoid tumour, Chromogranin A (CgA), Cimetidine, Dexilent, Dexlansoprazole, ENETS, Esomeprazole magnesium, Famotidine, Gastric NET, Gastrin, Gastrinoma, Gastroesophageal reflux disease (GERD), H2 blockers, H2 receptor antagonist (H2RA), Hormones, Hypergastrinemia, Lansoprazole, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nexium, Nizatidine, Nutrition, Omeprazole, Omeprazole and sodium bicarbonate, Pancreastatin, Pantoloc control, Pantoprazole, Pepcid (Famotidine), Prevacid (Lansoprazole), Prilosec (Omeprazole), Proton pump inhibitors (PPI), Protonix (Pantoprazole), Quality of LIfe (QoL), Rabeprazole (Aciphex), Ranitidine (Zantac), Stomach ulcer, Tagamet, Vimovo, Zantac, Zollinger-Ellison Syndrome

What are Proton pump inhibitors (PPIs)? Proton pump inhibitors (PPIs) are among the most commonly used medications in the world. They reduce the production of acid by blocking the enzyme in the wall of the stomach that produces acid. Acid is necessary for the formation of most ulcers in the oesophagus, stomach, and duodenum, and the reduction of acid with PPIs prevents ulcers and allows any ulcers that exist in the oesophagus, stomach, and duodenum to heal. PPIs are prescribed to treat acid-related conditions such as: Esophageal, duodenal and stomach ulcers NSAID-associated ulcer Ulcers Gastroesophageal reflux disease (GERD) Zollinger-Ellison Syndrome…

30 Aug 2018

By Ronny Allan

2 Comments

Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer

Clinical Trials and Research, Living with Neuroendocrine Cancer, Treatment111In-DTPA-D-Phe1, 177Lu-Edotreotide (Solucin®), 212Pb-AR-RMX, 64Cu-DOTATATE, Advanced neuroendocrine cancer, Carcinoid tumour, Ga68 PET/CT, Ga68-DOTATOC, Generator (radionuclide), Indium 111-pentetreotide, NETSPOT, Neuroendocrine cancer, Octreotide, Octreotide scan, PRRT, Somatostatin receptors (SSTR), SPECT

Updated Jan 2026What is 64CU dotatate It’s a high‑resolution PET tracer for imaging somatostatin‑receptor–positive neuroendocrine tumours (NETs), offering better lesion detection, longer imaging windows, and lower positron energy than 68Ga‑labelled agents. It consistently produces high tumour‑to‑background contrast and often finds additional metastatic sites missed by older SPECT agents like 111In‑octreotide. 🧬 64Cu‑DOTATATE vs 68Ga‑DOTATATE A clear, patient‑friendly comparison Both scans are excellent for finding neuroendocrine tumours (NETs). They work in the same basic way: a tracer attaches to somatostatin receptors on NET cells, and a PET/CT scanner shows where those cells are. The differences mainly relate to image clarity, timing,…

11 Apr 2018

By Ronny Allan

3 Comments

Sapanisertib – a drug on trial for Neuroendocrine Tumors (NET) with a pancreatic primary

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid tumour, Everolimus, Incurable cancer, Metastatic Neuroendocrine Cancer, mTOR inhibitor, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Sapanisertib

Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body. What is Sapanisertib? Sapanisertib is one of a group of targeted therapy drugs that interferes with tumor progression by inhibiting an enzyme known as mTOR which a tumor cell needs for growth. In fact this is the same technique used in Afinitor (Everolimus), already approved for NETs. It is also being tested in a number of different advanced cancers, including bladder, kidney, breast,…

03 Feb 2018

By Ronny Allan

5 Comments

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Clinical Trials and Research, Diet and Nutrition, TreatmentAmino acids, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Diarrhea, Enterade® advanced oncology formula, Hormones, Malabsorption, Medical food, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Radiotherapy, Surgery

Diarrhea is a huge subject for NET patients, whether it's caused by the tumour itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life. Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer - the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate. I don't normally write articles on over the counter commercial products but this one is an exception…

01 Feb 2018

By Ronny Allan

2 Comments

RonnyAllan.NET – Community Newsletter January 2018

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT, Somatostatin analogues

A great start to the year in both NETs in the news and my social media activity. Of course the headline is the US FDA approval of Lutathera (Lu-177) - i.e. PRRT I caught this news in my social media NET FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I'm very pleased for my USA friends but we mustn't forget it's also required in so many other places. Help me populate locations in my live article on PRRT click here. NET Epidemiology continues to be discussed and (yet) another well known…

31 Dec 2017

By Ronny Allan

2 Comments

NETwork with Ronny © – Community Newsletter DECEMBER 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, EndolucinBeta, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Somatostatin analogues

6 HAPPY NEW YEAR and welcome to Ronny Allan's Community newsletter for December 2017. A quieter month due to the holiday season in the latter half. I was generally quieter in the first half too, maybe that's a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month. At the end of 2017, I've been reflecting on the amazing support from you guys. I'm a bit 'discombobulated' but also proud to see that I've had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure. It seems almost impossible…

12 Dec 2017

By Ronny Allan

3 Comments

Update: Management of Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Diarrhea, Everolimus, Flushing, Hormones, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, PRRT, Quality of LIfe (QoL), Somatostatin analogues, Surgery, Telotristat ethyl (Xermelo), Xermelo (Telotristat ethyl)

This is an excellent and positive video based overview of where we are with the Management of NETs. This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference. This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too! I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains…

04 Dec 2017

By Ronny Allan

0 Comments

NETwork with Ronny © – Community Newsletter NOVEMBER 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pheochromocytoma

Welcome to Ronny Allan's Community newsletter for November 2017. A very strong beginning of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so…

01 Nov 2017

By Ronny Allan

4 Comments

NETwork with Ronny © – Community Newsletter OCTOBER 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Incurable cancer, Lutathera, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT

Hi NETworkers! Welcome to Ronny Allan's Community newsletter for October 2017. A very strong end of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site. I suspect the number of shares will never be beaten (652 in 36 hours). 31 Oct 2017 is now the biggest number of views on any one day, breaking the previous record set in Jan 2017. It also made October 2017 the highest monthly views…

16 Oct 2017

By Ronny Allan

2 Comments

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Biological therapy, Carcinoid tumour, Chemotherapy, Cure, Full remission, Hormones, Incurable cancer, Lanreotide, Liver directed therapy, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), No evidence of disease (NED), Oncolytic virus, Palliative treatment, Partial remission, Quality of LIfe (QoL), Somatostatin analogues, Surgery

OPINION: "Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions.…

02 Oct 2017

By Ronny Allan

3 Comments

Cancer Isn’t All About Me

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Biopsy, Carcinoid tumour, Core Biopsy, Incurable cancer, Mammogram, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Ultrasound

click picture to read "My Right-Hand Woman" Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is…

30 Sep 2017

By Ronny Allan

0 Comments

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Hormones, Incurable cancer, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, PRRT, Serotonin, Somatostatin analogues, Surgery, Telotristat ethyl (Xermelo), Xermelo (Telotristat ethyl)

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep. This is the first time the drug has ever been approved, despite being in use for over 10 years. In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not. Read more here. The European Commission approved the use of XERMELO (telotristat ethyl) for use…

28 Sep 2017

By Ronny Allan

19 Comments

Ever wonder what caused your Neuroendocrine Cancer?

Patient AdvocacyAtrophic gastritis, Carcinoid tumour, DNA, Gastric NET, Hereditary cancer syndrome, Incurable cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Neurofibromatosis type 1 (NF1), Pernicious anaemia, Pheochromocytoma, Small cell lung cancer (SCLC), Small intestine NET (SI NET), Zollinger-Ellison Syndrome

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 even…

11 Sep 2017

By Ronny Allan

7 Comments

Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

AwarenessAdvanced neuroendocrine cancer, Aretha Franklin, Bowel cancer, Carcinoid tumour, Colorectal cancer, Incurable cancer, Lung Cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic cancer

Background When you look at how cancer is classified and broken down, you can see why Neuroendocrine Neoplasm (the overarching term for Neuroendocrine Tumour and Neuroendocrine Carcinoma) often appears unlisted in certain websites and in certain clinical publications and press releases. Moreover, it robs awareness and funding for Neuroendocrine Cancer organisations, particularly when celebrities are involved in incorrect labelling. Below, I wanted to cover why that sometimes happens but also why that is undeservedly detrimental to Neuroendocrine Cancer awareness. Cancer Categories From a histological standpoint, there are hundreds of different cancers, which are grouped into six major categories: Carcinoma Sarcoma…

03 Sep 2017

By Ronny Allan

6 Comments

NETwork with Ronny © – Community Newsletter AUGUST 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Hormones, Incurable cancer, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, PRRT, Serotonin, Somatostatin analogues, Telotristat ethyl (Xermelo), Xermelo (Telotristat ethyl)

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is August 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval. Click here. However, in UK, there is a threat that PRRT won't be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA). Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond…

01 Aug 2017

By Ronny Allan

0 Comments

NETwork with Ronny © – Community Newsletter JULY 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Hormones, Incurable cancer, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, PRRT, Serotonin, Somatostatin analogues, Surgery, Telotristat ethyl (Xermelo), Xermelo (Telotristat ethyl)

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is July 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). July 26th was the 'Cancerversary' of my diagnosis - I'm still here after 7 years and I'm apparently a veritable newbie! There's some great comments on my 'I'm Still Here' post - check them out ... 'click here' NET News The following news items may be of interest: Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here. PRRT takes a step forward to being approved in USA. Click…

05 Jul 2017

By Ronny Allan

0 Comments

NETwork with Ronny © – Community Newsletter JUNE 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Everolimus, Incurable cancer, Merkel cell carcinoma, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Paraganglioma, Pheochromocytoma, PRRT, Serotonin, Sunitinib (Sutent)

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is June 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: NETs in the UK National News. Great publicity. Featuring NET Patient Foundation. Click here. Personalised PRRT is highlighted. Click here. Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here. Videos from LACNETS. I've not watched them all yet due to holiday but they are always great! Click here. PRRT. News of a PRRT trial being…

01 Jun 2017

By Ronny Allan

4 Comments

NETwork with Ronny © – Community Newsletter MAY 2017

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Everolimus, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT, Sunitinib (Sutent)

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). This year, it's occurred to me that I've gone beyond just being known as a 'blog' and have transformed into something with a much wider focus within the NET Community and beyond. I've added a new section called NET News. This is a catch up of stuff I've accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact…

19 May 2017

By Ronny Allan

5 Comments

ASCO 2017 – Let’s talk about NETs #ASCO17

Clinical Trials and Research5-HIAA, Advanced neuroendocrine cancer, American Society of Clinical Oncology (ASCO), Bone metastases, Cancer of unknown primary (CUP), CAPecitabine TEMozolomide (CAPTEM)., Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Chromogranin A (CgA), CLARINET, Comorbidity, DUNE trial, Durvalumab, ELECT study, Flushing, Ga68-OPS202, Grading, Hormones, Incurable cancer, Ki-67, Lanreotide, Liver metastases, Metastatic Neuroendocrine Cancer, Molecular markers, NETest, Neuroendocrine, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Pancreatic NET (PanNET), Peptide receptor radionuclide therapy (PRRT), Poorly differentiated, Pre-existing condition, PRRT, Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues, Stage, Surgery, Theranostics, Well differentiated

ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 'extracts' submitted for review and display. This is fairly complex stuff but much of it will be familiar to many. I've filtered and extracted all the Neuroendocrine stuff into one list providing you with an…

08 May 2017

By Ronny Allan

45 Comments

All you need to know about Peptide Receptor Radionuclide Therapy (PRRT)

Clinical Trials and Research, Treatment177Lu OPS 201, 177Lu-Edotreotide (Solucin®), 177Lu-PSMA-R2, 68Ga-PSMA-R2, Advanced neuroendocrine cancer, Carcinoid tumour, COMPETE trial, Ga68 PET/CT, Incurable cancer, Lanreotide, Lu-177, Lutathera, LUTIA clinical trial, Metastatic Neuroendocrine Cancer, NETSPOT, NETTER-1, NETTER-2, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Paraganglioma, Pheochromocytoma, PRCRT, Prostate Cancer, PRRT, Quality of LIfe (QoL), Radiopeptide, SomaKit TOC, Somatostatin analogues, Somatostatin receptors (SSTR), SPECT, Theranostics, Yttrium 90 (Y90)

Updated 11th March 2026 This update authored by many top names in the PRRT/NET world is extremely useful to bring you up to date in 2026 Lisa Bodei, Gopinath Gnanasegaran, Francesco Giammarile, Marianne Pavel, Valentina Ambrosini, Richard P. Baum, Dieter Hörsch, James R. Howe, Marta Cremonesi, Ghassan El-Haddad, Yuni K. Dewaraja, Thomas A. Hope, David Taieb,Joint EANM, IAEA, and SNMMI practical guidance on somatostatin receptor-targeted radionuclide therapy of neuroendocrine tumours, The EANM Journal, 2026, 100017, ISSN 3051-2921, https://doi.org/10.1016/j.eanmj.2026.100017.Click here (https://www.sciencedirect.com/science/article/pii/S3051292126000047) Abstract: Somatostatin analogue-based Peptide Receptor Radionuclide Therapy (PRRT) is a molecularly targeted radiopharmaceutical therapy involving the systemic administration of a…

02 May 2017

By Ronny Allan

4 Comments

NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Hi NETworkers! Welcome to my sixth 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). Highlights There are two main highlights for April which stood out for me: The publication of my WEGO Health Award PODCAST. This was a radio interview prior to the announcement that I had won the WEGO 'Best in Show Community' award. It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course). If you missed it, you can listen to it by clicking…

27 Feb 2017

By Ronny Allan

4 Comments

It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Axillary nodes, Carcinoid tumour, Distant metastatis, Endocrine, Ki-67, Lung nodule, Lymphadenectomy, Lymphatic system, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nodule, Octreoscan (Octreotide scan), Quality of LIfe (QoL), Supraclavicularfossa (SCF) lymph nodes, Surgery, Thyroid cancer

In 2012, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection, and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my…

21 Feb 2017

By Ronny Allan

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Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Cisplatin/Etoposide, CLARINET, Everolimus, Food and Drug Administration, Ga68 PET/CT, Ga68-DOTATATE, Gastrointestinal NET (GI-NET), High grade neuroendocrine tumour (NET), Immunotherapy, Lanreotide, Liver directed therapy, Lu-177, Lung NETs, Lutathera, Metastatic Neuroendocrine Cancer, Midgut, NETSPOT, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Octreotide scan, Pathology, Peptide receptor radionuclide therapy (PRRT), Poorly differentiated, PRRT, RADIANT, Somatostatin analogues, Sunitinib (Sutent)

I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed…

27 Jan 2017

By Ronny Allan

2 Comments

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Biopsy, Bronchoscopy, Camera pill, Capsule endoscopy, Carcinoid crisis, Carcinoid tumour, CLO test, Colonoscopy, Endoscopic retrograde cholangiopancreatography (ERCP), Endoscopic ultrasound (EUS), Endoscopy, Gastroscopy, Helicobacter pylori, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic cancer, Sigmoidoscopy, Surgery

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom. The mouth route is more accurately called a Gastroscopy…

19 Sep 2016

By Ronny Allan

14 Comments

Procrastination – it’s a killer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer

It's amazing to think that one minute I'm back from a holiday in the Caribbean and the next minute I'm being told the inside of my body is a 'train crash'. Just how does that work? In July 2010, I said to the Gastroenterologist investigating my low hemoglobin "I'm not even feeling ill". He sent me to an Oncologist who then told me that without treatment, the prognosis wasn't good (i.e. I would eventually die). I also told him I wasn't feeling ill ....as if my protest was somehow going to reverse the situation! The term 'silent cancer' was apt in…

24 Jun 2016

By Ronny Allan

14 Comments

What you don’t know might kill you

Awareness, TreatmentCarcinoid syndrome, Carcinoid tumour, Hormones, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

A few weeks before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday. Both of us were looking forward to a nice break after a hectic start to 2010. When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, what I didnt know all the time I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', was the fact that Neuroendocrine Tumours had been growing in my small intestine, had spread into my mesenteric lymph nodes, into my liver, into my left…

28 Jan 2016

By Ronny Allan

4 Comments

Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service

TreatmentBiopsy, Carcinoid tumour, Lung Cancer, Lung NETs, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Radio Frequency Ablation (RFA), Surgery

A team of radiologists and respiratory consultants who introduced a new and more efficient lung biopsy method at Barnet Hospital London, has been named the winner of the NHS Innovation Challenge Prize in the ‘cancer care’ category. Barnet Hospital is run by the Royal Free London NHS Foundation Trust which is well known for its Neuroendocrine Cancer Centre of Excellence. Not happy with this, they've now gone on to introduce a new service combining this innovative biopsy system with Radio Frequency Ablation (RFA) of tumours in the same procedure. Combined Biopsy with Radio Frequency Ablation (RFA) This new service has significant advantages…

04 Sep 2015

By Ronny Allan

2 Comments

Screw that diagnosis and get on with it!

GeneralCarcinoid tumour, Neuroendocrine, Neuroendocrine cancer, Quality of LIfe (QoL)

Every now and then I see a positive story during my travels around the internet. When I saw this one from K**** in Pennsylvania, I had to share. If you're feeling a little bit down and need cheering up, dig out this blog and take a read :-) K**** wrote: "I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43. I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life. But, things…

18 Aug 2015

By Ronny Allan

35 Comments

Neuroendocrine…..the little suckers get everywhere!

AwarenessCarcinoid tumour, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

UNDER REVIEW FOR REPUBLISHING USING 2025 DATA One of the key milestones in my awareness campaigns occurred when I featured as a guest blogger for one of the biggest cancer 'support' organisations in the world - Macmillan. The aim of the blog 'Sorry I'm not in service' was actually to highlight the consequences of cancer and its treatment (a Macmillan Campaign message), and to a certain extent to highlight the conflict that can often exist between work and cancer. However, it was also a fantastic opportunity for me to grab the interest of the general population with the word 'Neuroendocrine'. The response was amazing and on twitter it…

05 Dec 2014

By Ronny Allan

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Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Somatostatin analogues

UNDER CONSTRUCTION I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study. Different teaching methods? different teachers? Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since…

Tag: Carcinoid tumour