Treatment Archives

03 Jan 2023

2 Comments

RonnyAllan.NET – a review of 2022

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

14 Dec 2022

By Ronny Allan

0 Comments

A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment18F-FDG, 18F-FDG PET/CT, Ga68 PET/CT, Metastatic Neuroendocrine Cancer

BackgroundIt's normally the case that the higher the grade/Ki67 in Neuroendocrine Neoplasms (NENs), the less likely the tumours will have somatostatin receptors and therefore be able to take advantage of somatostatin receptor PET (SSTR PET) as the gold standard in nuclear imaging. This is why most grade 3 NENs will receive [18F]FDG PET/CT which finds glycolytic activity in the tumour and predicts an aggressive disease course and normally a higher histological grade. It can also add to prognostic outcomes, which in turn can add to therapy choice decisions. There is an overlap though, particularly with the recognition of well-differentiated Grade 3…

12 Dec 2022

By Ronny Allan

0 Comments

Stereotactic body radiation therapy (SBRT) in the treatment of Neuroendocrine Neoplasms

Clinical Trials and Research, TreatmentClinical trial, Ectopic Cushing’s syndrome (ECS), Glucagonoma, Insulinoma, Lung NETs, Pancreatic NET (PanNET), Stereotactic body radiotherapy (SBRT)

What is Stereotactic Body Radiation Therapy (SBRT)? External beam radiotherapy has been around for decades, but the technology has evolved dramatically. Today’s treatments involve new techniques, new machines, and new imaging methods, and these terms are often mixed together in ways that confuse patients. When people talk about “SBRT,” “CyberKnife,” or “Proton Beam,” they are often referring to completely different layers of radiotherapy — a technique, a platform, or a type of radiation. Some names are even brand‑specific. Understanding which layer each term belongs to makes the whole field much easier to navigate. SBRT is an external beam radiotherapy technique,…

08 Dec 2022

By Ronny Allan

0 Comments

Lanreotide Ipsen: 13 more years

Inspiration, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Somatuline Autogel (US: depot)

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). I once wrote a blog entitled "Four more years". I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times). As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views. I can tell you…

05 Nov 2022

By Ronny Allan

0 Comments

Incidentally, it’s not NET! SSTR PET e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment64Cu-DOTATATE, Ga68 PET/CT, Somatostatin receptors (SSTR), SSTR-PET

Incidental Findings in SSTR PET Somatostatin Receptor (SSTR) PET scans (e.g. Ga68/Cu64) have transformed the imaging landscape for Neuroendocrine Cancer, mainly for well-differentiated NETs, most of which will be somatostatin receptor positive. However, Oncologists/NET Specialists and radiologists must be aware of the various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error. Included in these pitfalls are incidental findings. What is an incidental finding? An incidental finding, also known as an incidentaloma, may be defined as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality (e.g. PET) performed…

17 Oct 2022

By Ronny Allan

0 Comments

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…

11 Oct 2022

By Ronny Allan

0 Comments

New test of pancreatic cysts to help with cancer detection

Clinical Trials and Research, Patient Advocacy, TreatmentPancreatic cancer, Pancreatic cyst, Pancreatic NET (PanNET), Pancreatic pseudocyst

With NETs, particularly pancreatic NETs, due to a lack of efficient prognostic markers, it is difficult to identify which cases are more likely to metastasise than others. Identifying whether cysts will turn cancerous is also another area requiring a screening program as a standard of care to monitor. Molecular testing is advancing and this test I'm reporting here looks like good news in the case of assessing the risks of pancreatic cysts. Pancreatic cysts are common. For example, up to 15% of the U.S. population will develop a pancreatic cyst at some point in their lives. Most of these cysts…

10 Oct 2022

By Ronny Allan

0 Comments

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAnxiety, Cancer surveillance, Epidemiology, No evidence of disease (NED), Prognosis

Musings from a metastatic NET patient of 15 years plus In every surveillance session I've had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to "stable". After a surveillance event in 2021, I was awarded the accolade of "reassuringly stable", a status which I was happy to accept! Words are very important to cancer patients, some people…

01 Sep 2022

By Ronny Allan

0 Comments

Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Clinical Trials and Research, TreatmentNeuroendocrine tumour (NET), Pancreatic NET (PanNET), Surgery

One of the most controversial subjects in Neuroendocrine Neoplasms is the management of small non-functional (asymptomatic) pancreatic NETs (NF-PanNEN). In the most general terms, surgery is not recommended in tumours less than 2cm. Allowances are made for those who are functional (i.e. symptomatic with one of several syndrome possibilities) or where the tumour is threatening important vessels (i.e. pre-emptive surgery). Normally watching and waiting is recommended. I wrote more detail in an earlier blog - Pancreatic Neuroendocrine Tumours - to cut or not to cut Some patients opt (or push for) a non-guideline surgery regardless and as one other patient…

15 Jun 2022

By Ronny Allan

0 Comments

CAPTEM for Neuroendocrine Tumours

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Capecitabine (Xeloda), CAPecitabine TEMozolomide (CAPTEM)., CAPTEM, Chemotherapy, Clinical trial, Pancreatic NET (PanNET), Temozolomide (Temodal)

What is CAPTEM? Capecitabine is an oral drug used alone or with other drugs to treat certain types of colorectal cancer and breast cancer. It is also being studied in the treatment of other types of cancer including in combination with a second drug. Capecitabine is taken up by cancer cells and breaks down into fluorouracil, a substance that kills cancer cells. Also called Xeloda. Note -Capecitabine is an oral Oral 5-FU prodrugs which are medications designed to be taken by mouth and converted into the active chemotherapy agent 5-flourouracil (5-FU) within the body, aiming for higher tumour selectivity and…

08 Jun 2022

By Ronny Allan

0 Comments

Clinical Trial: Dostarlimab, anti–PD-1 monoclonal antibody in Neuroendocrine Carcinoma

Clinical Trials and Research, TreatmentDostarlimab, Immunotherapy, Monoclonal antibodies, Neuroendocrine carcinoma (NEC), PD-1/PD-L1 Inhibitors, Small cell lung cancer (SCLC)

BackgroundFollowing the Americal Society of Clinical Oncology (ASCO) conference in June 2022 (ASCO is the biggest Oncology event in the world), the media widely featured the results of the Phase 2 clinical trial of the drug Dostarlimab, an anti–PD-1 monoclonal antibody. The media often looks for headline-grabbing stories and this was one of them. One UK TV outlet said they may have found the cure for cancer, which is a reckless statement when you look at the size and boundary of the clinical trial referenced. The detail is, that this was a phase 2 trial for "rectal adenocarcinoma", but specifically…

25 Apr 2022

By Ronny Allan

2 Comments

Histotripsy: A new technique that treats cancer using soundwaves

Clinical Trials and Research, TreatmentAblation, High-intensity focused ultrasound (HIFU), Histotripsy, Liver metastases

First published on April 25, 2022. Updated regularly. Last update 2nd Aug 2026. If you just want to know what Histotripsy is, just head straight down to "Original Article" section 2nd August 2026. Hong Kong - Pancreatic Cancer A pioneering medical team in Hong Kong has successfully completed the first two clinical trial cases using histotripsy to treat pancreatic cancer, offering new hope for patients with one of the most challenging forms of the disease. This marks a significant leap forward in adopting the non-invasive technology in Asia. Click here. 1st August 2026. Hong Kong Training Centre On 8th July…

10 Mar 2022

By Ronny Allan

5 Comments

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…

07 Mar 2022

By Ronny Allan

0 Comments

Clinical Trial: Testing the Use of Chemotherapy After Surgery for High-Risk Pancreatic Neuroendocrine Tumors

Clinical Trials and Research, TreatmentCAPecitabine TEMozolomide (CAPTEM)., CAPTEM, Chemotherapy, NETest, Pancreatic NET (PanNET), Surgery

An interesting trial centred on SW USA. The use of CAPTEM following surgery in high-risk pancreatic NETs (G2/G3 well-differentiated). Also includes the use of NETest at 3 time points, which is very interesting considering the recent withdrawal of Chromogranin A from US NET Guidelines. (Read about NETest here). Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide versus Observation in High-Risk Pancreatic Neuroendocrine Tumors (S2104) is a recently activated National Clinical Trials Network randomized phase II trial designed to compare CAPTEM chemotherapy versus observation following resection of pNETs (see Figure 2). Patients with well-differentiated grade 2 or 3 (Ki-67 up…

20 Jan 2022

By Ronny Allan

3 Comments

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

Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Well differentiated

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

09 Jan 2022

By Ronny Allan

0 Comments

Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trials and Research, Patient Advocacy, TreatmentASTX727, Clinical trial, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), Somatostatin receptors (SSTR), Well differentiated

What is the aim of this clinical trial?The aim of this single location trial in Imperial College London is to determine whether pre-treatment with ASTX727 results in re-expression of SSTR2 in patients with metastatic NETs, using 68Ga-DOTA-TATE to image epigenetic modification of the SSTR2 locus allowing subsequent treatment with Lutathera(i.e. PRRT). Patients entered into the study will receive ASTX727 orally up to 3 to 8 days prior to receiving Lutathera treatment. What is ASTX727?Oral Decitabine and Cedazuridine (ASTX727) is a DNA methyltransferase (DNMT) inhibitor currently being used in a trial to facilitate oral treatment of certain drugs for adults with intermediate…

03 Jan 2022

By Ronny Allan

0 Comments

Blog review and top 10 for 2021: RonnyAllan.NET

Awareness, Clinical Trials and Research, Diet and Nutrition, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentNeuroendocrine cancer

I should be happy with over a quarter of a million views in 2021 but I'm not! Like 2020, my figures are down on previous years as the pandemic seems to have changed viewing habits, not to mention my own bandwidth during this period. I created my private Facebook group not that long before the pandemic started, and I think that has been playing a part as huge chunks of my time has been taken up on that special project. I also changed the nature and the type of posts on my "Ronny Allan" Facebook page, which led to fewer…

05 Dec 2021

By Ronny Allan

5 Comments

Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Diet and Nutrition, Patient Advocacy, Treatment75Se-homocholic acid taurine (75SeHCAT), Bile acid diarrhea, Bile acid malabsorption, Bile salt, Bowel surgery, Cholecystectomy, Crohn's Disease, Digestive enzymes, Fecal bile acid test, Gallbladder, Irritable bowel syndrome (IBS), Pancreatic insufficiency, Serum 7αC4 test, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET)

Updated to include a Mayo Clinical study in 2026. Before progressing, I wanted to emphasise this is not necessarily the same type of malabsorption caused by exocrine pancreatic insufficiency (EPI) which can potentially lead to something known as steatorrhea (amongst other things) but it can produce the same effect. Steatorrhea is different from bile acid issues and is more related to fatty acids. But it's another piece of the diarrhea jigsaw. Bile Acid Malabsorption (BAM) and Bile Acid Diarrhea (BAD) Post-surgical diarrhea is probably something to expect in the early days and after time, adjustments can be made to cater…

23 Nov 2021

By Ronny Allan

2 Comments

177Lu-DOTA-LM3 – a novel radionuclide therapy proven safe and effective to treat neuroendocrine neoplasms (NEN)

Clinical Trials and Research, Treatment177Lu-DOTA-LM3, Peptide receptor radionuclide therapy (PRRT)

A new type of peptide receptor radionuclide therapy (PRRT) has been shown to control disease in 85 percent of patients with metastatic neuroendocrine neoplasms, achieving complete remission in some patients. The first-in-human study utilized 177Lu-DOTA-LM3 therapy, which was administered without severe adverse effects and was well tolerated by the majority of patients. This research was published in the November issue of The Journal of Nuclear Medicine (see citing below). Conclusion: The antagonist PRRT with 177Lu-DOTA-LM3 could be administered without severe adverse effects and was well tolerated by most patients, with thrombocytopenia occurring in only a few. No other severe adverse effects were observed; in…

23 Nov 2021

By Ronny Allan

3 Comments

Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”

Patient Advocacy, TreatmentBowel surgery, Small intestine NET (SI NET)

It's known that Neuroendocrine Cancer is quite different in many ways from other cancers, notwithstanding the misnomer term carcinoid which is thankfully being slowly moved out of terminology. As a few examples:It's a wide spectrum heterogeneous cancer group with indolent isolated small tumours at one end all the way across to extremely aggressive metastatic cases at the other end.It's a cancer type that can be syndromically functional or non-functional to add to diagnostic and management challenges.It's a cancer that can appear almost anywhere in the human body.One of it's less well-known traits is the ability to produce multiple primary tumours. …

20 Nov 2021

By Ronny Allan

2 Comments

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Bowel surgery, Carcinoid syndrome, Desmoplasia, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Retroperitoneal Fibrosis, Right hemicolectomy, Small intestine NET (SI NET), Surgery

Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications. At that point, I had been keeping my diagnosis within close family and friends and my manager at work. People at work and my wider list of friends were probably wondering what was going on with me. Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up. To be honest, the first…

17 Oct 2021

By Ronny Allan

0 Comments

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

0 Comments

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 Apr 2021

By Ronny Allan

10 Comments

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…

07 Mar 2021

By Ronny Allan

0 Comments

Treatment for Neuroendocrine Cancer – a summary for patients

Treatment5-Fluorouracil (5-FU), Atezolizumab (Tecentriq), Avelumab (Bavencio), Capecitabine (Xeloda), CAPecitabine TEMozolomide (CAPTEM)., Chemotherapy, Cisplatin, Cisplatin/Etoposide, Cryoablation, Cyberknife, Etoposide, External beam radiotherapy, FOLFIRI, FOLFOX, Gamma knife, Interferon alpha (IFNα), Irinotecan (Campto), Irreversible electroporation (IRE), Lanreotide, Liver directed therapy, Lu-177, Lutathera, NanoKnife®, Nivolumab (Opdivo), Octreotide (Octreotide acetate), Opdivo (Nivolumab), Paclitaxel (Taxol), Pembrolizumab (Keytruda), Peptide receptor radionuclide therapy (PRRT), Proton beam therapy, Radiation therapy, Somatostatin analogues, Somatostatin receptors (SSTR), Somatuline Autogel (US: depot), Stereotactic body radiotherapy (SBRT), Stereotactic radiosurgery (SRS), Streptozotocin (Zanosar), Surgery, Targeted therapy, Temozolomide (Temodal), Thorson-Bioerck syndrome, Tumour mutational burden (TMB), Vepesid), Watchful waiting

1. Scope This summary provides an overview of the types of therapy known for treating Neuroendocrine Cancer. They will have been approved at least by one national or regional approval agency, may not be available or approved in your own country; and may appear in clinical guidelines for the treatment of Neuroendocrine Cancer. Clinical trials will not be covered, although it's noted that some of the approved treatments listed may be in follow on trials either to prove new coverage or used in combination with another drug. For a list of clinical trials covered by the author, click here.…

25 Feb 2021

By Ronny Allan

0 Comments

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,…

13 Dec 2020

By Ronny Allan

2 Comments

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials and Research, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Biomarker, Ga68 PET/CT, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Lu-177, Lutathera, Molecular markers, NETest, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Standardised uptake value (SUV), Tumour marker

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community. This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this…

08 Dec 2020

By Ronny Allan

0 Comments

Lanreotide: Eleven more years please!

Inspiration, TreatmentAdvanced neuroendocrine cancer, Lanreotide, Metastatic Neuroendocrine Cancer, Somatuline Autogel (US: depot)

Back in February 2015, I wrote an article called "Four more years" and the title came from an election campaign happening at the time when I had been on Lanreotide for approximately four years. Inspired by this campaign slogan, I too wanted four more years and crafted the blog post. However, I was underselling myself as I've now hit 11 years of Lanreotide on 9th December 2021. On that day in 2010, I was still recovering from major surgery and hadn't had any somatostatin analogues since leaving hospital on 26th Nov. Prior to surgery, I had been taking daily shots…

18 Sep 2020

By Ronny Allan

1 Comment

Clinical Trial: Phase II CLARINET FORTE Somatuline Autogel (Lanreotide) increased dosing frequency

Clinical Trials and Research, TreatmentLanreotide, Neuroendocrine tumour (NET), Somatuline Autogel (US: depot)

CLARINET FORTE is a prospective single-arm, open-label, exploratory, international Phase II study to explore the efficacy and safety of an increased Somatuline® Autogel® (lanreotide) dosing frequency (120 mg every 14 days) in patients with metastatic or locally advanced unresectable pancreatic NETs or midgut NETs, with centrally-accessed progression within the last two years while on a standard lanreotide regimen (120 mg every 28 days) for more than 24 weeks.Data announced in September 2020 at the 2020 European Society for Medical Oncology (ESMO), indicated the phase 2 results support a clinically meaningful benefit to a population of patients with high unmet medical need…

24 Jun 2020

By Ronny Allan

0 Comments

Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Multi tyrosine kinase inhibitors (TKIs), Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Paraganglioma, Pheochromocytoma, Sunitinib (Sutent), Targeted therapy, Vascular endothelial growth factor (VEGF)

Click here to see the A to Z of Neuroendocrine Cancer What is Sunitinib (Sutent)? Manufactured by Pfizer, this is a targeted biological therapy or more accurately, a multitargeted tyrosine kinase inhibitor (TKI). You may also see it described as an anti-angiogenic agent on the basis that these tumor types are highly vascularized and show high expression of something called vascular endothelial growth factor (VEGF), a key driver of angiogenesis in neuroendocrine tumors. Because NETs are generally hypervascularized tumors, treatment with antiangiogenic drugs seems a rational approach. A complex process but in the simplest of terms, sunitinib blocks a particular…

22 Jun 2020

By Ronny Allan

0 Comments

Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid syndrome, Clinical trial, Everolimus, Mammalian target of rapamycin (mTOR) inhibitor, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Targeted therapy

What is Everolimus (Afinitor)? Manufactured by Novartis, this is a targeted biological therapy or more accurately, a mammalian Target of Rapamycin (mTOR) inhibitor. It works by stopping some of the signals within cells that make them grow and divide. Everolimus stops a particular protein called mTOR from working properly. mTOR controls other proteins that trigger cancer cells to grow. So everolimus helps to stop the cancer growing or may slow it down. The drug is also approved for Renal Cell Carcinoma (RCC) and hormone-receptor-positive advanced Breast Cancer. The drug is administered in oral form (tablet). The recommended dose for AFINITOR®…

21 Mar 2020

By Ronny Allan

2 Comments

COVID-19 and Cancer Treatment and Surveillance

Patient Advocacy, TreatmentCoronavirus, COVID-19, Neuroendocrine cancer

This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date. For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance. NEW CONTENT added 14th June 2020.For US patients - see the recently produced NANETS guidelines which provides guidance on the following:How is treatment for patients with NET/NECs likely to change during the COVID-19 outbreak?What should providers do to prepare their clinic for patients?Should octreotide or lanreotide be delayed or…

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,…

18 Jul 2019

By Ronny Allan

5 Comments

Pancreatic Neuroendocrine Tumours – to cut or not to cut

TreatmentAdvanced neuroendocrine cancer, ATRX, DAXX, Liquid biopsy, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic adenocarcinoma, Pancreatic cancer, Pancreatic NET (PanNET), pNET, Quality of LIfe (QoL), Surgery

Background I've written before about pancreatic NETs (pNETs), much of which has been on the awareness side of my advocacy work, particularly emphasising the differences with core Pancreatic Cancer (adenocarcinoma).Pancreatic NETs are quite difficult to diagnose and treat, some of that difficulty is due to the location of the pancreas and accessibility for surgeons and radiographers. It's not helped by the fact that most pNETs are non-functional, making diagnosis more difficult as there is little clinical suspicion to scan, but also results in more late diagnoses.Although biopsies are possible, mainly via endoscopic ultrasound or laparoscopy, they can still be difficult to…

04 Jun 2019

By Ronny Allan

4 Comments

LUTATHERA (PRRT) – Clinical Trial for Grade 2/Grade 3 Patients Advanced GEP-NET (NETTER-2)

Clinical Trials and Research, TreatmentClinical trial, Lutathera, NETTER-1, NETTER-2, Neuroendocrine cancer, PRRT, Somatostatin receptors (SSTR)

FINAL TRIAL RESULTS PUBLISHED 19TH JAN 2024Read more by clicking here.Original blog below. Brief Summary- The NETTER-1 trials led to the approval of Lu177 (or Lutathera), more commonly known in the community as Peptide Receptor Radio Therapy (PRRT). This led to an explosion of availability across the world but many gaps in service remain.Many PRRT spin off trials are in the pipeline looking at different types of PRRT, mainly using slightly different radionuclides and techniques. However, NETTER-2 builds on the success of the approved version formally known as Lutathera.The aim of NETTER-2 is to determine if Lutathera in combination with long-acting…

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…

14 Jan 2019

By Ronny Allan

0 Comments

Clinical Trial SPARTALIZUMAB – Immunotherapy for Neuroendocrine Neoplasms (PDR001)

Clinical Trials and Research, TreatmentGastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Immunotherapy, Lung NETs, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PDR001, Spartalizumab

UpdateTrial complete. Conclusion abstract - Single agent PD-1/PD-L1 inhibitors have not demonstrated clinical utility in an unselected NET population and should not be used outside of clinical trials. The potential for PD-L1 inhibition in the thoracic cohort warrants further investigation. Read more here. PDR001 (anti-PD-1) is an investigational immunotherapy being developed by Novartis to treat both solid tumors and lymphomas (cancers of the blood). It is currently being trialled on many cancers including Neuroendocrine. Its brand name is SPARTLIZUMAB.How PDR001 worksPDR001 is a type of immunotherapy, meaning that it acts by activating the body’s own immune system to recognize and fight…

20 Dec 2018

By Ronny Allan

7 Comments

Q-Sphera™ – Next Generation Somatostatin Analogue delivery system?

Clinical Trials and Research, Living with Neuroendocrine Cancer, TreatmentClinical trial, MTD201, Q-Octreotide, Q-Sphera, Sandostatin

Update May 2026. There has been no further news about this initiative so it should be assumed that the development has ceased. Internet searches indicate that n late 2022, Midatech announced an acquisition to expand its portfolio and subsequently changed its name to Biodexa Pharmaceuticals PLC. There is no indication on their new website of any treatment in the pipeline for NET. UPDATE: In March 2020, the decision was taken to terminate further in-house development of the MTD201 programme with immediate effect although the asset remains available for licensing. All activities connected with MTD201 have been wound down expeditiously and…

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,…

31 May 2018

By Ronny Allan

17 Comments

All you need to know about Somatostatin Receptor PET/CT Scans for Neuroendocrine Tumours

Treatment64Cu-DOTATATE, CT scan, Degenerative bone disease, Detectnet, Ga68 PET/CT, Ga68-DOTANOC, Meningioma, NETSPOT, Neuroendocrine cancer, Octreotide scan, Osteoblastic activity, Overdiagnosis, Pancreatic uncinate process, Physiological uptake, Radioligand, Radioligand therapy, Radionuclide, SEER, SomaKit TOC, Splenosis, Splenunculus, SSTR-PET, Surveillance, Vertebral haemangioma

Cancer is a growth industry ...literally! More people are being diagnosed than ever before. Fortunately, more people are surviving than ever before. This is against a backdrop of better awareness, better screening in the big population cancers, and to a certain extent better diagnostic tools, all of which is leading to earlier diagnosis. So how does this affect Neuroendocrine Cancer? According to the latest SEER database figures for Neuroendocrine Cancer, one reason for the 7 fold increase in incidence rates since the 1970s is all of those things above including better diagnostics. This has led to a revised set of…

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…

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…

20 Nov 2017

By Ronny Allan

5 Comments

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…

24 Oct 2017

By Ronny Allan

2 Comments

Round up of NANETS 2017 – Let’s talk about NETs #NANETS2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAnxiety, Appendiceal NET, Bronchial NET, Cabozantinib, Diarrhea, Fatigue, Ga68 PET/CT, Lu-177, Lutathera, Lymph nodes, NETTER-1, North American Neuroendocrine Tumor Society (NANETS), PRRT, Quality of LIfe (QoL), Somatostatin analogues, Somatostatin receptors (SSTR), SSTR-PET

NANETS (North American Neuroendocrine Tumor Society) is one of the biggest NET conferences, bringing together NET Specialists from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field of Neuroendocrine Neoplasms (Tumors and Carcinomas). This is fairly complex stuff but much of it will be familiar to many. I’ve filtered out several outputs from the conference which I think are both relevant and topical to patients. The list is below allowing you to easily peruse and read further via linkages if you need to read more. Remember, some of these are extracts so do not…

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

Reviewed and tweaked in August 2026. 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…

08 Oct 2017

By Ronny Allan

7 Comments

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Chemotherapy, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Surgery

Patient stories are key to any awareness campaign. Nothing like a human being standing up and letting you know about their experience. Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the 'kick ass' type stories, some are just thankful, some are reflective - all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like "I'm still here", although I can veer left and right when the mood takes me! Because of my social media…

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…

13 Jul 2017

By Ronny Allan

34 Comments

At home with Lanreotide (….and Octreotide)

TreatmentLanreotide, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Sandostatin, Somatostatin analogues, Somatuline Autogel (US: depot)

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). I think after 163 injections (as of May 2023), I think it's safe to say I'm now 'at home' with Lanreotide (Somatuline Autogel - Somatuline Depot elsewhere). I want to talk about Lanreotide here because that is where my experience is. However, below I have included a bit about how patients can get their long-acting Octreotide (Sandostatin LAR) at home too.I was fortunate enough to have…

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 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…

Category: Treatment