Tag: Octreotide

A drug similar to the naturally occurring growth hormone inhibitor somatostatin. Octreotide is used to treat diarrhea and flushing associated with certain types of tumours including NET.

Common brand name Sandostatin. Acetate is a form of acetic acid (an acid found in vinegar).

Also known as Octreotide acetate

23 Jun 2026

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Clinical Study from the Australasian Gastro-Intestinal Trials Group (AGITG) STOPNET

Clinical Study from the Australasian Gastro-Intestinal Trials Group (AGITG) STOPNET

Clinical Trials and Research, Patient AdvocacyClinical trial, Lanreotide, Octreotide, Peptide receptor radionuclide therapy (PRRT), Somatostatin analogues

Disclaimer:Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals. I've been luckier than some. I suspect I was treated earlier despite being diagnosed at stage IV (go figure). I had 3 surgeries 2010-2012 and since then only treatment with a 28 day somatostatin analogue (Lanreotide)…

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22 Jun 2026

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SYHX2008: A New Self‑Injectable subcutaneous Long‑acting Octreotide on the Horizon for NETs

SYHX2008: A New Self‑Injectable subcutaneous Long‑acting Octreotide on the Horizon for NETs

Clinical Trials and Research, TreatmentOctreotide

Disclaimer:Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals. A new long‑acting octreotide formulation is emerging that could expand treatment options for people with gastroenteropancreatic neuroendocrine tumours (GEP‑NETs). SYHX2008, developed by CSPC Pharmaceutical Group, is a once‑monthly, pre‑filled, subcutaneous long‑acting octreotide designed for self‑administration. For…

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29 Jun 2025

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A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO)

A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO)

Clinical Trials and Research, TreatmentClinical trial, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Lanreotide, Octreotide, Sandostatin, Somatostatin analogues, Somatostatin receptors (SSTR)

Click here to read the latest announcement on 11 June 2026. The FDA has assigned a Prescription Drug User Fee Act (PDUFA) target action date of 10 June 2026 for Acromegaly. Lund, Sweden — 9 January 2026 — Camurus (NASDAQ STO: CAMX) today announced that the U.S. Food and Drug Administration (FDA) has accepted for review the company’s resubmission of the New Drug Application (NDA) for Oclaiz™ (CAM2029), octreotide extended-release injection, for the treatment of patients with acromegaly. The FDA has assigned a Prescription Drug User Fee Act (PDUFA) target action date of 10 June 2026. Note: CAM2029 received a…

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15 Mar 2025

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Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAcid reflux, Advanced neuroendocrine cancer, Amylase, Antiacids, Barrett's Esophagus, Bile acid malabsorption, Bile acid sequestrant, Carcinoid syndrome, Carcinoid tumour, Cholestyramine, Exocrine function (pancreas), Exocrine pancreatic insufficiency, Fecal elastase test, Fecal fat, H2 receptor antagonist (H2RA), Hormones, Lanreotide, Lipase, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Nutrizym, Octreotide, Pancrease, Pancreatic cancer, Pancreatic insufficiency, Pancreatic NET (PanNET), Pancreatin, Pancrex, Pepcid (Famotidine), Protease, Proton pump inhibitors (PPI), Quality of LIfe (QoL), Small intestine bacterial overgrowth (SIBO), Somatostatin analogues, Steatorrhea, Surgery, Total gastrectomy, Total pancreatectomy, Zantac, Zollinger-Ellison Syndrome

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…

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16 Feb 2025

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Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Benign tumour, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, CT scan, Diarrhea, Everolimus, Ga68 PET/CT, Hormones, Incurable cancer, Lanreotide, Malignant, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreoscan (Octreotide scan), Octreotide, Pancreatic cancer, Pseudomyxoma peritonei (PMP), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Sunitinib (Sutent), Surgery, Terminal cancer

Edited and refreshed 13th January 2026 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 metastasise Simply untrue. They are a heterogeneous group of tumours. Read more…

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29 Jan 2025

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Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs: Awaiting approval for GEPNETs (COMPETE) expected 28th Aug 2026

Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs: Awaiting approval for GEPNETs (COMPETE) expected 28th Aug 2026

Clinical Trials and Research68Ga edotreotide (TOCscan®), Advanced neuroendocrine cancer, Afinitor, COMPETE trial, Edotreotide, EndolucinBeta, Everolimus, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Neuroendocrine cancer, Neuroendocrine tumour (NET), No-Carrier-Added Lutetium-177 (n.c.a. Lu177), Octreotide, Solucin ®, Somatostatin analogues, Somatostatin receptors (SSTR), TOCscan®

Update 4th July 2026. Data from the Phase 3 COMPETE trial - ITM11 [177Lu]Lu-edotreotide led to statistically significant and clinically meaningful improvements in progression-free survival. Efficacy and harms results support the use of [177Lu]Lu-edotreotide in early lines of therapy in patients with advanced, progressive GEP NETs. Bonus info about other trials for NET: 1. There is also an ITM11 product on trial for more aggressive G2/G3 GEPNETs known as COMPOSE - click here 2. An ITM11 product trial for Lung and Thymic NETs is running and currently in Phase 3 - known as LEVEL - Click here 3. A ITM11…

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21 Jan 2025

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Neuroendocrine Cancer – my liver surgery April 2011

Neuroendocrine Cancer – my liver surgery April 2011

Treatment5-HIAA, Adhesions, Advanced neuroendocrine cancer, Carcinoid syndrome, CT scan, Debulking surgery, Lanreotide, Laparoscopic surgery, Liver embolization, Liver metastases, Metastatic Neuroendocrine Cancer, Octreotide, Octreotide scan

From day 1 of my diagnosis, I knew my liver was going to need some attention, but I had always known that total removal of all tumours would not be possible - the diagnostic scan confirmed I had an incurable disease. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several with quite avid isotope activity. However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery which took…

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18 Jan 2025

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Ronny Allan – Every picture tells a story

Ronny Allan – Every picture tells a story

Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Afinitor, Anxiety, Biopsy, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Clinical trial, COVID-19, Diagnosis, Diarrhea, Diet, Everolimus, Flushing, Ga68 PET/CT, Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Octreotide scan, Pancreatic NET (PanNET), Paraganglioma, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Surgery

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),…

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15 Jan 2025

28 Comments

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

TreatmentAdvanced neuroendocrine cancer, Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, ELECT study, Flushing, Gastrinoma, Glucagonoma, Hormones, Insulinoma, Lanreotide, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Quality of LIfe (QoL), Somatostatin analogues, Somatuline Autogel (US: depot), VIPoma

Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. 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 over secretions 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…

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11 Jan 2025

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Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)

Survivorship, TreatmentDebulking surgery, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Octreotide, SI NET, Small intestine NET (SI NET)

8th - 26th November 2010 Memories of my 18-day stay in the hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days when morphine was in control. For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease. In fact, I now know from my own research that NETs are one of a small number of cancers for which surgical debulking can in many…

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24 Nov 2024

29 Comments

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Diet, ENETS, Hormones, Immunotherapy, Incurable cancer, Lanreotide, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, PRRT, Quality of LIfe (QoL), SEER, Somatostatin analogues, Surgery

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…

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28 Sep 2024

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Cessation of Somatostatin Analogues After PRRT in Mid, Hind-Gut and Pancreatic Neuroendocrine Tumours (STOPNET)

Cessation of Somatostatin Analogues After PRRT in Mid, Hind-Gut and Pancreatic Neuroendocrine Tumours (STOPNET)

Clinical Trials and ResearchClinical trial, Lanreotide, Octreotide, Peptide receptor radionuclide therapy (PRRT), Somatostatin analogues

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…

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22 Sep 2024

9 Comments

Don’t be underactive with your Thyroid surveillance

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentConstipation, Depression, Dry skin, Fatigue, Goitre, Graves’ disease, Hashimoto's disease, Heat intolerance, Hormones, Hyperthryroidism, Hypothyroidism, Lanreotide, Levothyroxine, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Palpitation, Pituitary gland, Quality of LIfe (QoL), Radioactive iodine, Somatostatin analogues, Sweating, Thyroid stimulating hormone (TSH), Thyroiditis, Thyroxine (T4), Triiodothyronine (T3)

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…

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06 Sep 2024

11 Comments

Palliative Care – it might just save your life

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, Advanced neuroendocrine cancer, Bowel surgery, Carcinoid syndrome, Distant metastatis, Hormones, Hospice care, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Palliative care, Palliative treatment, Quality of LIfe (QoL), Syndrome

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…

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27 Aug 2024

5 Comments

The 5 E’s (of Carcinoid Syndrome)

The 5 E’s (of Carcinoid Syndrome)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, Alcohol, Alcohol flushing reaction, Carbocaine, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Diet, Epinephrine, Ethanol, Flushing, Hypertension, Intraoperative hypertensive crisis, Lanreotide, Liver metastases, Malabsorption, Marcaine, NET syndromes, Novocaine, Octreotide, Paraganglioma, Pheochromocytoma, Probiotic, Surgery, Syndrome, The 5 E's

The 5 Es was a good idea but the boundary was never properly defined. I don't believe it applies to all NETs (including patients) and I don't believe it is necessarily confined to carcinoid syndrome Original Post Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid…

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25 Aug 2024

12 Comments

Chemo or not Chemo – that is the question

Chemo or not Chemo – that is the question

TreatmentAfinitor, Antineoplastic therapy, CAPecitabine TEMozolomide (CAPTEM)., Carboplatin, Chemotherapy, Cisplatin, Cytotoxic, Everolimus, Fluorouracil (5-FU), Hormone therapy, Lanreotide, Mammalian target of rapamycin (mTOR) inhibitor, mTOR inhibitor, Octreotide, Oxaliplatin (Eloxatin), Protein kinase inhibitor, Somatostatin analogues, Streptozotocin (Zanosar), Sunitinib (Sutent)

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 tumour cells. Because systemic cytotoxic chemotherapy targets…

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05 Aug 2024

38 Comments

Neuroendocrine Cancer – it takes guts

Neuroendocrine Cancer – it takes guts

SurvivorshipAfinitor, Anxiety, Chemotherapy, Diabetes, Everolimus, Lanreotide, Octreotide, PRRT, Somatostatin analogues, Stress, Sunitinib (Sutent), Surgery, Underactive thyroid

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…

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01 Aug 2024

2 Comments

Neuroendocrine Cancer: Glossary of Terms

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Appendiceal NET, Carcinoid syndrome, Chemotherapy, Clinical trial, COVID-19, Diagnosis, Diarrhea, Diet, Everolimus, Flushing, Ga68 PET/CT, Gastric NET, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Immunotherapy, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Octreotide scan, Pancreatic cancer, Pancreatic NET (PanNET), Paraganglioma, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer sites. How to use this list: 1. If your term begins with an A, see the list of As etc. Ditto for B to Z. Select your term from the list, the definition will show along with any of my blogs where that term is mentioned – this adds context. . 2. Numerical terms are also listed. Please note I’m constantly working on the repository to clean up all definitions, adding and removing links where necessary, and…

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24 Jul 2024

3 Comments

Diabetes – The NET Effect

Diabetes – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, The NET Effect SeriesAdrenocorticotropic Hormone (ACTH), Afinitor, Blood glucose, Cortisol, Cushing's syndrome, Diabetes, Distal pancreatectomy, Everolimus, Exocrine function (pancreas), Glucagon, Glucagonoma, Glycated Hemoglobin (A1C), HbA1c, Hyperglycemia, Hypoglycemia, Insulin, Insulinoma, Lanreotide, NET syndromes, Octreotide, Pancreas, Pancreatic enzyme replacement therapy (PERT), Pancreatogenic diabetes, Pancreoprivic diabetes, Prediabetes, Somatostatin analogues, Somatostatinoma, Sunitinib (Sutent), Total pancreatectomy, Type 1 diabetes, Type 2 diabetes, Type 3c diabetes, Type 3c diabetes mellitus (T3cDM), Whipple procedure

Updated January 2026Originally published September 2018. My 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 with a score…

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05 Jul 2024

19 Comments

Neuroendocrine Cancer – the diarrhea jigsaw

Neuroendocrine Cancer – the diarrhea jigsaw

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, BAM, Bile acid malabsorption, Bile acid sequestrant, Bile salt, Carcinoid syndrome, Chemotherapy, Constipation, Creon, Diet, Differential diagnosis, Flushing, Gastrinoma, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, IBS, Imodium, Incurable cancer, Lanreotide, Loperamide hydrochloride, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, Pancreatic enzyme replacement therapy (PERT), PPoma, Quality of LIfe (QoL), Radiotherapy, Serotonin, Somatostatin analogues, Somatostatinoma, Steatorrhea, Supplements, Surgery, Telotristat ethyl (Xermelo), Terminal ileum, Tryptophan hydroxylase (TPH), VIPoma

Reviewed and updated 5th July 2024 Diarrhea 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, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma, PPoma. 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…

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20 Jun 2024

21 Comments

Somatostatin Receptors

Somatostatin Receptors

Awareness, TreatmentCarcinoid syndrome, Carcinoid tumour, Gamma camera, Hormones, Lanreotide, Octreotide, Octreotide scan, Pasireotide, Peptide receptor radionuclide therapy (PRRT), PRRT, Radiolabelled somatostatin analogue, SIGNIFOR® (Pasireotide), Somatostatin analogues, Somatostatin receptors (SSTR), Standardised uptake value (SUV), Yttrium 90 (Y90)

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! Somatostatin It's important to understand this hormone and…

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11 Jun 2024

22 Comments

Neuroendocrine Cancer: My 15 year experience with Lanreotide Ipsen

Neuroendocrine Cancer: My 15 year experience with Lanreotide Ipsen

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment5-HIAA, Advanced neuroendocrine cancer, Butt dart, Carcinoid syndrome, CLARINET, Diabetes, Flushing, Granulinoma, Hormones, Lanreotide, Lung NETs, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Octreotide, Octreotide scan, Peptide, Somatostatin analogues, Somatuline Autogel (US: depot), SPINET, Surgery

On 9th December 2025, I celebrated 15 years of Lanreotide - click here to read about that. Update 12th May 2026. I received injection number 200! Click here to read more. 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). Please note the remainder of this blog covers Lanreotide Ipsen, generics are covered here. My Lanreotide Experience When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be…

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29 May 2024

7 Comments

I bet my flush beats yours?

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment5-HIAA, Bradykinin, Broken capillaries, Calcitonin gene-related peptide (CGRP), Carcinoid syndrome, Carcinoid tumour, Estrogen, Flushing, Functional tumour, Gonadotropin-releasing hormone (GnRH), Histamine, Hormones, Hypokalemia, Luteinizing hormone (LH), Mastocytosis, Medullary thyroid cancer (MTC), Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Noradrenaline, Nutrition, Octreotide, Pheochromocytoma, Prostaglandin, Quality of LIfe (QoL), Rosacea, Serotonin, Substance P, Surgery, Tachykinin, The 5 E's, VIPoma, Watery diarrhea

Background Neuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some. Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, diagnoses of NET can be…

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23 May 2024

20 Comments

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, TreatmentB12, Bile acid diarrhea, Bile acid malabsorption, Bile acid sequestrant, Bile acids, Bile salt, Carcinoid syndrome, Digestive enzymes, Endocrine, Fat malabsorption, Fat soluble vitamins, Gallbladder, Gut Flora, Hormones, Iron Deficiency Anaemia, Lanreotide, Liver, Malabsorption, Neuroendocrine, Neuroendocrine cancer, Nutrition, Octreotide, Pancreatic cancer, Pancreatic NET (PanNET), Pernicious anaemia, Probiotic, Quality of LIfe (QoL), Side effect, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET), Somatostatin analogues, Steatorrhea, Surgery, Vitamin ADEK, Vitamin B12, Water soluble vitamins

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…

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03 May 2024

27 Comments

I look well but you should see my insides

I look well but you should see my insides

Awareness, Living with Neuroendocrine Cancer, Survivorship, TreatmentChemotherapy, Invisible illness, Lanreotide, Neuroendocrine cancer, Octreotide, Palliative treatment, Quality of LIfe (QoL), SI NET, Small intestine NET (SI NET), Somatostatin analogues, Surgery

Note: This text is based on my experience in 2015/2016 when I had my injections given at a chemotherapy ward in my local hospital. I have now been receiving them at home since 2017. Original blog follows: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…

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29 Mar 2024

1 Comment

Diagnosed with Neuroendocrine Tumours: Hurry up and wait

Diagnosed with Neuroendocrine Tumours: Hurry up and wait

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentDiagnosis, Distant metastatis, Intermediate grade NET, Liver embolization, Low Grade NETs, Metastatic Neuroendocrine Cancer, Multidisciplinary team (MDT), Octreotide, Octreotide scan, Small intestine NET (SI NET), Surgery

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when…

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22 Mar 2024

15 Comments

Neuroendocrine Cancer – Horrible Hormones

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy24-hour urinary catacholamines and metanephrines, 5-HIAA, 5-Hydrotryptophan (5-HTP), Addison's disease, Adrenal insufficiency, Adrenaline, Adrenocorticotropic Hormone (ACTH), Aldosterone, Anaphylactic shock, Androgrens, Antihistamines, Appendiceal NET, Bradykinin, Calcitonin, Calcitonin gene-related peptide (CGRP), Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Catecholamines, Chromogranin A (CgA), Corticotrophin releasing hormone (CRH), Cushing's disease, Cushing's syndrome, Diarrhea, Endocrine, Enterochromaffin cells, Epinephrine, Estrogen, Fight or flight, Flushing, Ga68 PET/CT, Gastric NET, Gastrin, Glucagon, Histamine, Hormones, HPA axis, Hyperparathyroidism, Hypocortisolism, Hypotension, Hypothalamus, Insulin, Intraoperative hypertensive crisis, Islet cell, Islet of Langerhams, Kallikrein, Lanreotide, Lung NETs, Malabsorption, Mast cell, Medullary thyroid cancer (MTC), Metanephrines, Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine, Neuroendocrine neoplasm (NEN), Neurokinin A (NKA), Neuropeptide K, Neurotensin, Neurotransmitter, Norepinephrine, Nutrition, Octreotide, Octreotide scan, Ovarian NEN, Pancreastatin, Pancreatic NET (PanNET), Pancreatic polypeptide (PP), Paraganglioma, Pellagra, Peptide, Pheochromocytoma, PPoma, Prostaglandin, Pruritus, Serotonin, Somatostatin, Somatostatinoma, Substance P, Tachycardia, Tachykinin, Telotristat ethyl (Xermelo), Testosterone, The 5 E's, Tryptophan, Vasoactive intestinal peptide (VIP), Vasodilation, VIPoma, Xermelo (Telotristat ethyl)

Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos! Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you…

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29 Jan 2024

4 Comments

Do we need a new model for Carcinoid Crisis in NETs?

Do we need a new model for Carcinoid Crisis in NETs?

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Anesthesia, Carcinoid crisis, Carcinoid syndrome, Cardiopulmonary hemodynamic instability, Distributive shock, Epinephrine, Octreotide, Vasosuppressors

Update February 2026. Before you read this, please note: Why Practice Is Changing Faster Than the Guidelines Modern peri‑operative management for neuroendocrine tumours is evolving rapidly, and several factors explain why clinical practice in some expert centres has moved ahead of formal guidelines: 1. New evidence challenges long‑held assumptions Recent surgical series — most prominently from OHSU Portland USA — show that prophylactic octreotide does not reliably prevent carcinoid crisis and that crises behave more like distributive shock, responding better to vasopressors than to somatostatin analogues. This directly contradicts decades of dogma. 2. Guidelines update slowly by design Bodies such…

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21 Dec 2023

5 Comments

Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome

Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome

Clinical Trials and ResearchAcromegaly, Adrenocorticotropic Hormone (ACTH), Biased agonist, Carcinoid syndrome, Clinical trial, CRN00808, Cushing's disease, Hyperinsulinism, Lanreotide, Neuroendocrine tumour (NET), Octreotide, Sandostatin, Somatostatin analogues, Somatostatin receptors (SSTR)

What is Paltusotine Paltusotine is the first oral, once-daily, selectively targeted somatostatin receptor type 2 (SST2) agonist being developed for the treatment of acromegaly and carcinoid syndrome. The method of operation appears to be similar in that it wants to bind to somatostatin receptor 2 (SST2). In the meantime, see short video and note that the drug for Acromegaly is more advanced in pipeline terms (now in Phase 3). In terms of the effect on NETs, these tumours typically over express SST2, somatostatin type 2 receptors. Both SST2 and 3 are involved in apoptosis of neuroendocrine tumour cells.” Paltusotine’s high level…

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10 Nov 2023

10 Comments

I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment5-HIAA, Biopsy, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Flushing, Hormones, Neuroendocrine cancer, Octreotide, Octreotide soak, Somatostatin analogues, Surgery

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. …

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07 Nov 2023

2 Comments

8th November 2010 – on the way to hospital for surgery, alert the crash team!

8th November 2010 – on the way to hospital for surgery, alert the crash team!

TreatmentAdvanced neuroendocrine cancer, Carcinoid crisis, Carcinoid syndrome, Octreotide, Octreotide soak, Surgery

The Journey to the Hospital on 8th November didn’t go smoothly!I had to be admitted to hospital for my surgery on 8th Nov 2010, but the surgery was not taking place until 9th November. The technical reason for that is explained further below. Not a good start, 13 years ago today, Chris was driving me to the hospital for my first surgery, the "my big surgery" as I call it. It was "debulking" i.e. get as much as possible. In the end, the liver was left for another day.I had been working since being diagnosed and was still sending work emails…

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06 Oct 2023

1 Comment

Just got (a) shot in the buttocks

Just got (a) shot in the buttocks

Humour, Inspiration, Patient Advocacy, TreatmentCarcinoid syndrome, Flushing, Lanreotide, Octreotide, Somatostatin analogues, Surgery

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'…

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03 Jan 2023

2 Comments

RonnyAllan.NET – a review of 2022

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Clinical trial, COVID-19, Diagnosis, Diet, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Peptide receptor radionuclide therapy (PRRT), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Somatostatin receptors (SSTR), Surgery

Review In 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…

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10 Mar 2022

5 Comments

Clinical Trial: Mycapssa (octreotide capsules) for Neuroendocrine Tumours (drug discontinued, clinical trials cancelled – at least in EU countries)

Clinical Trial: Mycapssa (octreotide capsules) for Neuroendocrine Tumours (drug discontinued, clinical trials cancelled – at least in EU countries)

Clinical Trials and Research, TreatmentMYCAPSSA , Octreotide, Somatostatin analogues

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…

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11 Sep 2021

0 Comments

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

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)…

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22 Apr 2021

10 Comments

Generic Somatostatin Analogues for Neuroendocrine Cancer

Generic Somatostatin Analogues for Neuroendocrine Cancer

TreatmentBynfezia Pen, Generic drugs, Lanreotide, Octreo-ratiopharm®, Octreotide, Olatuton®, Sandostatin, Somatostatin analogues, Somatostatin receptors (SSTR), Somatuline Autogel (US: depot)

Generic Somatostatin Analogues. I've covered a lot about somatostatin analogues, particularly the two predominant approved drugs Lanreotide and Octreotide. Octreotide has many particularly in daily shots and more recently in long acting, but Lanreotide being a newer drug has taken a while for generics to appear. I had to study what generic means and it's important to differentiated the brand from the actual drug name as the latter does not normally change. 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…

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25 Feb 2021

0 Comments

My treatment is a pain in the butt!

My treatment is a pain in the butt!

TreatmentLanreotide, Octreotide, Sandostatin, Somatostatin analogues, Somatuline Autogel (US: depot)

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The post header is a bit ‘tongue in cheek’ (…. did you see what I did there?) I’m very happy to have this treatment every 4 weeks – I can think of far worse scenarios. When I was first diagnosed, the dreaded word ‘Chemo‘ was discussed. Chemo isn’t particularly effective in treating the lower grades of Neuroendocrine Cancer but it is used extensively at high grade and often in Grade 2 showing more effectiveness in pancreatic NETs. Looking back though,…

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09 Feb 2020

3 Comments

Oral Octreotide using RaniPill™

Oral Octreotide using RaniPill™

Clinical Trials and ResearchAcromegaly, Clinical trial, Neuroendocrine cancer, Octreotide, Octreotide-RP, Somatostatin analogues

Credit: Rani Therapeutics Update 21st March 2022 Preclinical data demonstrates new RaniPill™ HC (High Capacity) delivered 500%-plus higher payloads than current RaniPill™ capsule. Up to 20mg payload has the potential to unlock more than 50 additional biologics for internal development. Update 4th May 2021 According to Fierce Biotech, Rani Therapeutics has secured $69 million in new funding to move forward with the manufacturing and clinical testing of its “robotic pill”—a small, swallowable capsule that promises to shepherd more delicate drugs past the stomach before releasing them into the bloodstream. The pill aims to make it easier for a patient to…

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30 Aug 2018

2 Comments

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

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,…

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30 Jan 2018

1 Comment

I now take food with my medicine!

I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, SurvivorshipAdvanced neuroendocrine cancer, Asthma, Carcinoid syndrome, Cholecalciferol, Creon, Diet, Eliquis (apixaban), Fat soluble vitamins, Hormones, Incurable cancer, Lanreotide, Levothyroxine, Malabsorption, Medicines and Healthcare Products Regulatory Agency, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, Omega 3, Pancreatic enzyme replacement therapy (PERT), Probiotic, Pulmonary embolism, Quality of LIfe (QoL), Somatostatin analogues, Somatuline Autogel (US: depot), Supplements, Vitamin ADEK, Vitamin B12, Vitamin D, Water soluble vitamins

If you want to strike up a friendly conversion with a Brit, ask him or her about the weather - we're really famous for our weather conversations and they normally focus on rain or clouds! However, despite the famous British 'reserve' and 'stiff upper lip', they also frequently talk about being 'under the weather', a phrase meaning slightly unwell or in low spirits.I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests. Here, conversations bypass the weather and focus on being under the weather! I thought…

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12 Dec 2017

3 Comments

Update: Management of Neuroendocrine Tumors

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…

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20 Nov 2017

5 Comments

Living with Neuroendocrine Cancer – the 7 Year Itch

Living with Neuroendocrine Cancer – the 7 Year Itch

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Allergies, Atopic dermatitis, Bradykinin, Carcinoid syndrome, Eczema, Food allergy, Gastrinoma, Glucagonoma, Histamine, Hormones, Lanreotide, Lung NETs, Malabsorption, Mastocytosis, Merkel cell carcinoma, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Octreotide, Pheochromocytoma, Quality of LIfe (QoL), Rash, Rosacea, Serotonin, Somatostatin analogues, Substance P, Tachykinin, Zollinger-Ellison Syndrome

I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery. It had taken 12 days for me to feel strong enough to venture onto social media with a simple message "I'm feeling perkier". For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed. I guess I met some of these descriptors most…

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19 May 2017

5 Comments

ASCO 2017 – Let’s talk about NETs #ASCO17

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…

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08 May 2017

45 Comments

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

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 1st July 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…

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21 Feb 2017

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

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…

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18 Jan 2017

5 Comments

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Awareness, Clinical Trials and Research, Living with Neuroendocrine Cancer, TreatmentAdvanced neuroendocrine cancer, Edotreotide, Ga68 PET/CT, Indium 111-pentetreotide, Lutathera, Metastatic Neuroendocrine Cancer, NETSPOT, NETTER-1, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nuclear medicine, Octreoscan (Octreotide scan), Octreotide, Pancreatic NET (PanNET), Paraganglioma, Pentetreotide, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, PRRT, Radionuclide, Satoreotide (Lutetium-177), SomaKit TOC

Theranostics is a joining of the words therapeutics and diagnostics. You may also see it conveyed as 'Theragnostics' and these terms are interchangeable. The basic aim of theranotistics is to find and then destroy the 'bad guys'. With Neuroendocrine Cancer, finding the tumours (the bad guys) can often be a challenge - they can be small and/or difficult to find - they are sometimes expert at camouflage. Moreover, once found, they can then be difficult to treat (destroy), as they can often prove resistant to conventional cancer drugs and many are inoperable due to sheer quantity, spread and positioning. When…

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01 Jan 2017

3 Comments

NETwork with Ronny © – Newsletter December 2016

NewslettersCarcinoid crisis, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Pheochromocytoma, PRRT, Somatostatin analogues

Hi NETworkers! Welcome to my second 'community' newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!). December was a particularly special month. For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards. This paid off and I won the Best in Show 'Community' category in addition to being shortlisted as one of 5 finalists in the blog category. The community award was special because it means we all won the award as…

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02 Nov 2016

9 Comments

Neuroendocrine Cancer – Exciting Times Ahead!

Neuroendocrine Cancer – Exciting Times Ahead!

Inspiration, Survivorship, TreatmentAfinitor, Chemotherapy, Diarrhea, Everolimus, Functional tumour, Gallium 68 (Ga68), Lanreotide, Lung NETs, Metastatic Neuroendocrine Cancer, mTOR inhibitor, NETSPOT, Neuroendocrine, Non-functional tumour, Nuclear medicine, Octreotide, Octreotide scan, Oncolytic virus, Peptide receptor radionuclide therapy (PRRT), PRCRT, PRRT, RADIANT, Radiolabelled somatostatin analogue, Serotonin, Somatostatin analogues, Somatostatin receptors (SSTR), Telotristat ethyl (Xermelo)

In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc. Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time. There's even more in the pipeline and I'm hoping…

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04 Apr 2016

3 Comments

Somatostatin Analogues and delivery methods in the pipeline

Somatostatin Analogues and delivery methods in the pipeline

Awareness, Clinical Trials and Research, Living with Neuroendocrine CancerAcromegaly, Adrenocorticotropic Hormone (ACTH), Bynfezia Pen, COR-003, COR-005, Cortisol, CRN01941, Cushing's disease, Cushing's syndrome, DP1038, Everolimus, Flushing, Generic drugs, Growth hormone (GH), Hypercortisolism, Insulin-like growth factor 1 (IGF-1), Lanreotide, Levoketoconazole (Recorlev), MTD201, MYCAPSSA , Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Octreotide-RP, Pasireotide, Q-Octreotide, RECORLEV (levoketoconazole), SIGNIFOR® (Pasireotide), SOM230, Somatoprim, Somatostatin receptors (SSTR)

NOTE - THIS IS IN NEED OF AN UPDATE AND IS ON MY LIST OF THINGS TO DOThis is my live blog post covering new developments in the area of new Somatostatin Analogues and new delivery systems. AbstractAs most of you will be aware, there are currently two main types of Somatostatin Analogues (SSA) in use for the treatment of mainstream Neuroendocrine Tumours (NETs) - Octreotide and Lanreotide. You can click on the links for information on both of these well-known NET treatments. This post will focus on the not so well known and anything in the pipeline including different delivery…

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07 Sep 2015

11 Comments

PRRT and the NHS England Cancer Drugs Fund (now archived information)

TreatmentAfinitor, DOTA-TATE, Everolimus, Gallium 68 (Ga68), Lu-177, Lutathera, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nuclear medicine, Octreotide, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, PRRT, Radiolabelled somatostatin analogue, Radionuclide, Yttrium 90 (Y90)

Please note this post is now historic information - PRRT (Lutathera) was eventually approved for use in UK. See the following post for the very latest on PRRT worldwide - CLICK HERE I was extremely disappointed to learn of the decision to remove PRRT (Lutetium or Yttrium) from the Cancer Drugs Fund (CDF). You can read the detail of the decision here: CDF Statement. PRRT has regularly been described by NET specialists and patients as the "magic bullet" due to its potential to shrink or kill tumours. This is the second Neuroendocrine Cancer treatment to be withdrawn this year, after…

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