Ronny Allan - Living with Neuroendocrine Cancer - Page 11 of 16 - Ronny Allan - International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping patients and their advocates

10 Sep 2022

2 Comments

Awareness Post – Neuroendocrine Cancer in children and adolescents

Awareness, InspirationMEN1 syndrome, MEN2A syndrome, MEN2B syndrome, Multiple Endocrine Neoplasia (MEN), Neuroblastoma, Paraganglioma

September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many children's cancer articles. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. In 2020. this case came up in my google alerts and was related to a family who live not far from me in the south of England. An…

04 Sep 2022

By Ronny Allan

0 Comments

Thyroid nodules – something or nothing?

Patient AdvocacyNodule, Thyroid, Thyroid cancer, Thyroid nodule

I came across this excellent summary of Thyroid nodules from the American Association of Endocrine Surgeons which links to a similar European one. It confirms much of what I wrote in my blog post "Troublesome Thyroids" in regard to my own thyroid issues. I'm thankful to the AAES for promoting this on social media. I wanted to focus on the issue of Thyroid nodules given I see these mentioned all the time in my online patient group. Clearly, when you already have a cancer diagnosis, the discovery of more issues on top of that is of concern to patients. Many…

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…

30 Aug 2022

By Ronny Allan

0 Comments

Prospective phase II trial of [68Ga]Ga-NODAGA-E[c(RGDyK)]2 PET/CT imaging of integrin for prognostication in patients with neuroendocrine neoplasms

Clinical Trials and ResearchGa68 PET/CT, Neuroendocrine neoplasm (NEN)

August 25, 2022 -- A new gallium-68 PET radiotracer appears effective for predicting higher risk of disease progression and mortality in patients with neuroendocrine tumors, according to a study published August 18 in the Journal of Nuclear Medicine. Conclusion: Tumor lesion uptake of 68Ga-NODAGA-E[c(RGDyK)]2 was evident in patients with all grades of NEN. High uptake was associated with a poorer prognosis. Further studies are warranted to establish if 68Ga-NODAGA-E[c(RGDyK)]2 PET/CT may become a prediction tool for identification of patients eligible for treatments targeting integrin αvβ3. Why is this different to regular Ga68 Dotatate? In the simplest of terms, Ga68 Dotatate is targeting somatostatin receptors which…

05 Aug 2022

By Ronny Allan

0 Comments

Curtis Crump: “If I’m going down, it won’t be without a fight.”

Clinical Trials and Research, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carboplatin, Chemotherapy, Clinical trial, Etoposide, Immunotherapy, Ipilimumab (Yervoy), Metastatic Neuroendocrine Cancer, Nivolumab (Opdivo)

Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell. Given 6 months to live, he refused to accept that prognosis and looked elsewhere. He found a top hospital that directed him to an established clinical trial of immunotherapy. Curtis has a high grade aggressive type of Neuroendocrine Cancer called Neuroendocrine Carcinoma (with a Colon primary). The immunotherapy has some effect to the point that he was able to have surgery, a treatment option not always available to poorly differentiated Neuroendocrine Carciomas. His story is relevant to many people's experiences across the broad spectrum of…

27 Jul 2022

By Ronny Allan

0 Comments

Survival Outcomes in Metastatic Gastroenteropancreatic Neuroendocrine Tumor Patients receiving Concomitant 225Ac-DOTATATE Targeted Alpha Therapy and Capecitabine: A Real-world Scenario Management Based Long-term Outcome Study

Clinical Trials and Research225Ac, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Targeted alpha-emitter therapy (TAT)

Introduction I've written about both 225Ac-DOTATATE targeted alpha therapy (TAT) and Capecitabine before but never as a concomitant pair (combo). So, when this Indian study came up on my radar, I felt it was a useful addition to my website adding to my existing targeted alpha therapy portfolio of information. India appears to be using more of this type of PRRT than any other country. Read more about targeted alpha therapy by clicking here or on the photo below. Read more about Capecitabine (combo with Temozolomide) by clicking here or on the photo below. The abstract from the Indian study…

26 Jul 2022

By Ronny Allan

14 Comments

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

I finally made 12 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 47 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…

20 Jul 2022

By Ronny Allan

0 Comments

Assessment of Clinical Response Following Atezolizumab and Bevacizumab Treatment in Patients With Neuroendocrine Tumors: A Nonrandomized Clinical Trial

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Atezolizumab (Tecentriq), Avistan, Bevacizumab, Clinical trial, Immunotherapy, Monoclonal antibodies, PD-1/PD-L1 Inhibitors, Vascular endothelial growth factor (VEGF)

Background Well differentiated NETs have been described as an "immunological desert" in recent years mainly due to the poor response rate data coming out of clinical trials of immunotherapy drugs. Poorly differentiated NEC has favoured better but mainly in the more obscure types. Which is why these data of a combo treatment containing one immunotherapy drug caught my eye. What is atezolizumab? It is a type of monoclonal antibody and a type of immune checkpoint inhibitor. It's a Programmed cell death protein -1 (PD-1)/ Ligand 1 (PD-L1) inhibitor. A drug that binds to the protein PD-L1 to help immune cells…

19 Jul 2022

By Ronny Allan

3 Comments

Neuroendocrine Cancer: diagnostic dilemmas in July 2010

AwarenessAdenocarcinoma, Advanced neuroendocrine cancer, Biopsy, CT scan, Diagnosis, Differential diagnosis, Hydrocele, Liver metastases, Lymphoma, Mesenteric root, Retroperitoneal Fibrosis, Teratoma

Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010. I guess one of the reasons I do this is to be thankful that I'm still alive but also, I have a sneaking suspicion that I'm still trying to remember small detail from that period. It had felt surreal ever since 8th July when the secondary care investigating doctor sent me for a CT scan leading to a biopsy on 19th July. That scan and subsequent biopsy were to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just…

17 Jul 2022

By Ronny Allan

3 Comments

CT scan findings in the COVID era: Ground Glass Opacities (GGO)

Patient AdvocacyCOVID-19, CT scan, Ground glass opacities

The COVID-19 pandemic filled our vocabularies with more medical terms than most of us would ever hear about, but some were familiar. It soon became clear that CT scans were a useful tool to check for COVID-19. One 2022 study showed that COVID-19 shares some features with other viral types of pneumonia, despite some differences. They commonly present as "ground glass opacities" (GGO) along with vascular thickening, air bronchogram and consolidations. Also, they differ by age, disease severity, and outcomes among COVID-19 patients. GGOs refer to findings CT scans of COVID-19 patients that can help diagnose and monitor the infection.…

12 Jul 2022

By Ronny Allan

2 Comments

Me and the other big C – June/July 2022

Living with Neuroendocrine Cancer, SurvivorshipCOVID-19

Recently, Chris and I felt lucky not to have caught covid since the pandemic started in early 2020. That said, not that we would know in the early days before tests were available. We both had bad colds/flu in March 2020 but we will never find out if that was covid or not. I wrote about this experience in a diary I maintained over that period. It was therefore a bit of a shock when both of us finally tested positive in the middle of 2022, despite surviving unscathed through several waves since the pandemic began in early 2020. To…

21 Jun 2022

By Ronny Allan

0 Comments

New PET findings after COVID-19 vaccination: Keep Calm and Carry On?

Patient AdvocacyCOVID-19, Ga68 PET/CT, PET Scan, Scanxiety

After a few months of introducing C-19 vaccines, many cases of false-positive lymph nodes were reported on nuclear PET scans, some of which led to unnecessary biopsies and unnecessary worry for the patients concerned. According to Mayo Clinic, the positive nodes were on the same side as the vaccine shot in the cases where the injection site was known. Mayo added that some cases had uptake in the deltoid muscle, which is normally where vaccine injections are given, leading to increased suspicion of false positive in cases where uptake was in both deltoid muscle and axillary lymph nodes (armpit). At…

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…

04 Jun 2022

By Ronny Allan

5 Comments

On the Cancer Journey, don’t forget to live your life

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCancer surveillance, Cancer survivor

Many things in life can seem like a bump in the road or a journey along a windy road not sure where the next turn is. In some ways, a cancer diagnosis is another of these inopportune moments, albeit one with many facets. With incurable Neuroendocrine Tumours, many people need to be prepared for a long journey.Beware of the common trap of thinking in terms of all or nothing; or rushing to conclusions. Even with localised NETs which have been removed with curative intent, the journey may continue for a while until your doctors, and you are sure the destination has…

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 19th September 2025. If you just want to know what Histotripsy is, just head straight down to "Original Article" section 19th September 2025. Australia Cholangiocarcinoma Foundation Australia have taken the lead and are campaigning for access to this innovative treatment. As NET patients in Australia, you can help. Read more by clicking here April 2025. Singapore Singapore's National Cancer Centre Singapore (NCCS)Search company and National University Cancer Institute, Singapore (NCIS). Company are set to begin clinical trials of a revolutionary cancer disease treatment called histotripsy in the second half…

24 Apr 2022

By Ronny Allan

1 Comment

We are still here!

InspirationCancer survivor, Survivor, Survivorship

I'm always amazed at the responses to my post "I'm still here" and it has become a bit of a catchphrase I use, even in response to a question in my private group.What I see is that many of us are still here and I wanted to dedicate this post to those who frequently join in with my "I'm still here" posts.I'm glad you're still here too. Share or comment if you agree!We are still hereCheck out the fantastic response to my 5th year 'cancerversary' post. Click here to be inspired. Missed out 6th!!!Check out the fantastic response to my 7th…

08 Apr 2022

By Ronny Allan

1 Comment

My illness may be invisible, but I am not

Awareness, Living with Neuroendocrine Cancer, SurvivorshipAdvanced neuroendocrine cancer, Cancer surveillance, Cancer survivor, Carcinoid syndrome, Diabetes, Hypothyroidism, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Surgery

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years…

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…

03 Mar 2022

By Ronny Allan

0 Comments

A Spotlight on Lung Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types SeriesAtypical carcinoid tumour, Atypical Lung NET, Combined Neuroendocrine Carcinoma, Cushing's syndrome, DIPNECH, Large cell neuroendocrine carcinoma (LCNEC), Lung NETs, MEN1 syndrome, Neuroendocrine carcinoma (NEC), Small cell lung cancer (SCLC), Syndrome of inappropriate antidiuretic hormone secretion (SIADH), Typical lung NET

Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment. Lung Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here. Always discuss your own situation, test results, and treatment options with your specialist team, including your thoracic, oncology, endocrine, or NET multidisciplinary team (MDT). If you have concerns about symptoms, progression, or treatment decisions, please seek guidance from your clinical team without delay. This 2026 updated spotlight summarises the latest understanding of Lung Neuroendocrine Neoplasms (NENs), including terminology,…

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)

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 for these side effects. With NETs, particularly where there…

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…

25 Oct 2021

By Ronny Allan

1 Comment

Opinion: On World Neuroendocrine Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

AwarenessCarcinoid, Neuroendocrine cancer, Zebra

On World Neuroendocrine Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Where do I start ........ well, there are three main things wrong with Neuroendocrine Cancer awareness. Ancient Misnomers 1. The community remains entrenched in 1907 terminology which needs to be brought into 2022. Things have moved on so much but the use of this ancient terminology and what it infers, just keeps us marking time in the last century. It does not do us any favours in awareness terms, nor does it do us any favours in clinical terms. If clinicians, scientific organisations (including pharma and…

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…

02 Oct 2021

By Ronny Allan

1 Comment

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, SurvivorshipAnxiety, Depression, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

I see a lot of emotional and anxiety issues in my private group. I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population. Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it. I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients. February 2020 - boom! Add in a global…

21 Sep 2021

By Ronny Allan

0 Comments

Lutetium 177Lu-Edotreotide Versus Best Standard of Care in Well-differentiated Aggressive Grade-2 and Grade-3 GastroEnteroPancreatic NeuroEndocrine Tumors (GEP-NETs) – (COMPOSE)

Clinical Trials and Research177Lu-Edotreotide (Solucin®), Clinical trial, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Peptide receptor radionuclide therapy (PRRT), PRRT

Garching / Munich, October 27, 2022 ITM Isotope Technologies Munich SE (ITM), a leading radiopharmaceutical biotech company, today announced that the U.S. Food and Drug Administration (FDA) has granted the company Fast Track designation for ITM-11 (n.c.a. 177Lu-edotreotide), an investigational radiopharmaceutical for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). ITM-11 is being evaluated as a Targeted Radionuclide Therapy in two phase III clinical trials, COMPETE and COMPOSE. The FDA Fast Track is a process designed to facilitate the development and expedite the review of drugs to treat serious conditions and address an unmet medical need. The purpose is to bring new and promising medicines to patients sooner. The…

18 Sep 2021

By Ronny Allan

0 Comments

New Clinical Trial – Testing Lutetium Lu 177 Dotatate in Patients With Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors

Clinical Trials and ResearchClinical trial, Lung NETs, Lutathera, Peptide receptor radionuclide therapy (PRRT), Somatostatin receptors (SSTR)

When I see a trial for Gastroenteropancreatic NETs (GEPNETs), I know that BP (Bronchopulmonary) NETs (includes Lung) are not included. When you look at the approval wording for the major treatments in use (PRRT Lutathera, Lanreotide), they appear to use the term GEPNETs making BP NETs the poor relative. Clearly there’s highly complex reasons why NETs react differently in different parts of the body. I can see that BP NET patients were involved in clinical trials for both of the mainstream treatments listed above. The drug approval process is also highly complex, and I can see from the wording that functional…

12 Sep 2021

By Ronny Allan

1 Comment

The GRAIL multi-cancer early detection test study

Clinical Trials and ResearchMolecular markers, Tumour marker

Updated 26 Apr 2025. The GRAIL Test (Galleri)Update USA 26th Apr 2025 GRAIL to Present New Data on Galleri® and its Methylation Platform at American Association for Cancer Research (AACR) Annual Meeting in Chicago, April 25-30, 2025. Detail to follow - read announcement here. Update UK 26th Apr 2025 The NHS-Galleri trial (NCT05611632) is a randomised controlled trial (RCT) of 140,000 participants being conducted in the NHS in England. The aim of the trial is to assess the clinical utility of the Galleri test to detect cancer early in a population of people who don’t have symptoms, when used alongside existing NHS…

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)…

09 Sep 2021

By Ronny Allan

6 Comments

UK Travel Insurance – please give cancer patients a break!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with Ronny

Updated and reviewed 20th February 2026 - UK travel insurance - opinion. FOR UNITED KINGDOM (UK) NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients. One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned. This is based entirely on my own experience and decisions. I also declare no interest in any of the companies listed,…

02 Sep 2021

By Ronny Allan

6 Comments

In the early days, I thought I was going to die

Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Diagnosis, Epidemiology, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Prognosis, Well differentiated

Opinion. It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability. BUT there is also the thought of dying of cancer. I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65. I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger…

08 Aug 2021

By Ronny Allan

1 Comment

Cancer-related fatigue (CRF) – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect SeriesCancer related fatigue, Depression, Diabetes, Diarrhea, Fatigue, Hypothyroidism, Invisible illness, Malabsorption, NET syndromes, Nutrition, Quality of LIfe (QoL)

In my patient support group of almost 10,000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers. I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day. In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for…

04 Aug 2021

By Ronny Allan

8 Comments

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Diarrhea, Diet, Flushing, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Nutrition, Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues

I do a lot of writing about NETs but I guess I've also done some talking too. Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings. Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides. Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal. Some talks were not recorded and/or permitted to be shared. These include (but are not limited to) a presentation to 'Global' Ipsen in Paris, UK…

26 Jul 2021

By Ronny Allan

7 Comments

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

I finally made 11 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in…

25 Jul 2021

By Ronny Allan

2 Comments

Neuroendocrine Cancer: 48 hours before diagnosis

Humour, InspirationAdvanced neuroendocrine cancer, Biopsy, CT scan, Mesentery, Retroperitoneal Fibrosis, Small intestine NET (SI NET)

A week before my formal diagnosis, I had a liver biopsy (19th July 2010), and I repeat what I said in this post, for me it wasn't exactly a walk in the park. I had a mild anesthetic, I felt extremely uncomfortable throughout, and I was in pain. In fact, they did call in another nurse to help and her only job was to hold my hand in reassurance, (from what I remember). Most patients report no issues with their liver biopsy. I was sent home on 20th July with some painkillers, but that pain was gone within 24 hours.…

12 Jul 2021

By Ronny Allan

3 Comments

A person with Neuroendocrine Cancer fell into a hole and couldn’t get out……….

Inspiration, Patient AdvocacyNeuroendocrine cancer, Quality of LIfe (QoL)

A person with Neuroendocrine Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper.A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper still…

01 Jul 2021

By Ronny Allan

1 Comment

A painting from America

InspirationNeuroendocrine cancer

Which one is the painting? (See separate originals below) I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail. Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. This time it was a parcel from USA but unlike the story "Letter from America" (see below), I was expecting this one. One of the NET community had selected one of my walk…

31 May 2021

By Ronny Allan

4 Comments

I have walked 500 miles and I will walk 500 more (….. sing along)

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipCancer survivor

https://youtu.be/VKyWLAaStwM?t=53 At the beginning of the year, I signed up to walk 1000 miles in 2021. I can now confirm, I'm halfway there in 5 months. I have buffer time ..... but only if I keep going. By total coincidence it came on the anniversary of the completion of an 84 mile walk along Hadrian's Wall on 31st May 2014. 500 miles seems a lot more than that epic journey, but Chris and I did do around 300 miles in training to build up our stamina. Am I mad walking 1000 miles as a Stage 4 cancer patient? Not quite…

22 May 2021

By Ronny Allan

2 Comments

Clinical Trial Phase 2: Survivin Long Peptide Vaccine (SurVaxM) with Temozolomide in Treating Patients With Grade 3 Neuroendocrine Neoplasms

Clinical Trials and ResearchCancer vaccine, Glioma, Gliomablastoma, Metastatic Neuroendocrine Cancer, Multiple myeloma, SurVaxM, Survivin

Update 5th May 2026. Biotechnology company MimiVax Inc. and Roswell Park Comprehensive Cancer Center today jointly announced the launch of a phase 2 clinical trial (NCT06202066) evaluating SurVaxM in combination with temozolomide in patients with progressing neuroendocrine tumours, also known as NETs. The study is being conducted at Roswell Park in Buffalo, New York, under the direction of principal investigator Dr. Jasmeet Kaur.This trial has changed course. It started in 2021 as a phase 1 trial for NETs. A separate trial then added Temozolomide as a combo treatment. Then Phase 2 of the clinical trial gathered all the data and the original trial continues with the…

10 May 2021

By Ronny Allan

3 Comments

Clinical Trial: [212Pb]VMT-α-NET Alpha-emitter – Phase 1/2a Clinical Trial

Clinical Trials and Research212Pb, Clinical trial, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Targeted alpha-emitter therapy (TAT), VMT-𝛼-NET

Update 21 June 2025. Perspective Therapeutics Commences Recruitment for [212Pb]VMT-α-NET in the Third Dose Escalation Cohort of its Ongoing Phase 1/2a Clinical Trial June 21, 2025 [212Pb]VMT-α-NET Phase 1/2a study is advancing into Cohort 3 with a fixed administered dose that is up to 20% higher (6 mCi) than the dose administered to patients in Cohort 2 Dosimetry sub-study analysis presented at the Society of Nuclear Medicine & Molecular Imaging (SNMMI) 2025 Annual Meeting to advance utility of dosimetry in clinical development when considered with clinical data On track to submit further clinical updates to scientific congresses in 2H 2025,…

30 Apr 2021

By Ronny Allan

1 Comment

Dual Tracer (68Ga-DOTATATE and 18F-FDG) PET Imaging in G2 & G3 Gastroenteropancreatic Neuroendocrine Tumours

Clinical Trials and Research18F-FDG, Ga68 PET/CT, Ga68-DOTATATE, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Somatostatin receptors (SSTR)

For some time now, I've been watching the development of PET scans for Neuroendocrine Neoplasms (NENs). I use the term 'Neoplasms' because there are different strategies for well and poorly differentiated types, Neuroendocrine Tumour (NET) and Neuroendocrine Carcinoma (NEC) respectively.It's known that most NETs have somatostatin receptors which makes tumours be seen better on somatostatin receptor-based imaging e.g. 68Ga-DOTATATE or 64Cu DOTATATE, but more aggressive types tend not to have working somatostatin receptors and are better seen on regular PET, i.e. 18F-FDG PET/CT. However, nothing in NENs is simple and there's always outliers. This has been highlighted since the addition…

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.…

01 Mar 2021

By Ronny Allan

0 Comments

Ronny Allan Newsletter – 1st March 2021

NewslettersNeuroendocrine cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OverviewMany thanks for the support in February both on public pages and in my group - in fact the group's statistics are totally booming - that is helping a lot of people. My public sites still need some work and I'm hoping you can help with that. Of course, it's not helped by my finger injury which is holding me back. Read more about that problem below.Monthly update followsThe newsletter is now divided into several sections:1. External news of interest. …