Clinical Trials and Research – Ronny Allan – Living with Neuroendocrine Cancer

22 Apr 2024

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“An odd disposition of tumours” – less common metastases in Small Intestine and Pancreatic NETs

Clinical Trials and Research, Patient AdvocacyAdvanced neuroendocrine cancer, Axillary nodes, Bone metastases, Distant metastatis, Supraclavicularfossa (SCF) lymph nodes

Every day is a learning day in NET! When I was diagnosed in 2010, my Oncologist sent me for a specialist scan that would help confirm my staging definition and to document anything that might not have shown up on CT. This was described as an Octreotide Scan (somatostatin receptor scintigraphy) (now mostly replaced by Somatostatin Receptor PET (SSTR PET) e.g. Ga68/Cu64). Lo and behold, the 3 day Octreotide scan lit up some odd places which seemed to be unconnected to my small intestine primary. I was already stage IV due to the presence of liver metastases and this was…

10 Apr 2024

By Ronny Allan

1 Comment

A Phase 2 Open Label Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive NETs

Clinical Trials and Research212Pb, 212Pb-AR-RMX, Clinical trial, Peptide receptor radionuclide therapy (PRRT), PRRT, Targeted alpha-emitter therapy (TAT)

Update 12th January 2024 FDA Grants Breakthrough Therapy Designation to AlphaMedix for Gastroenteropancreatic Neuroendocrine Tumors (Lung and other Non-GEPNETs - see author's comments below) The FDA has granted breakthrough therapy designation to AlphaMedix (212Pb-DOTAMTATE) for the treatment of adult patients with unresectable or metastatic, progressive somatostatin receptor (SSTR)–expressing gastroenteropancreatic neuroendocrine tumors (GEP-NETs) who have not previously received peptide receptor radioligand therapy (PRRT). AlphaMedix represents the first Targeted Alpha Therapy to receive this designation. Breakthrough Therapy designation is a process designed to expedite the development and review of drugs that are intended to treat a serious condition and preliminary clinical…

29 Jan 2024

By Ronny Allan

4 Comments

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

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

Update January 2024Dr Rodney Pommier, a NET specialist surgeon in Oregon has been writing about the issue of carcinoid crisis for some years and has finally produced data which turns previous guidelines on their head. Clearly when it comes to (so called) carcinoid crisis, surgeons are at the sharp end of experience alongside their anaesthetist colleagues. The detail from the study sits behind a paywall but the conclusion is given and cited below. You can read the abstract here or click on the 'conclusion' section below. I again emphasise as I have done in the original publication of this research below, nothing…

19 Jan 2024

By Ronny Allan

0 Comments

Clinical Trial – Lutathera NETTER-2 Important Update

Clinical Trials and Research, TreatmentLutathera, Peptide receptor radionuclide therapy (PRRT), Radioligand therapy

UPDATE - January 19th, 2024. Novartis Lutathera® significantly reduced risk of disease progression or death by 72% as first-line treatment for patients with advanced gastroenteropancreatic neuroendocrine tumors - Novartis radioligand therapy Lutathera® demonstrated statistically significant and clinically meaningful progression-free survival in first line advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs)In the Phase III NETTER-2 trial, Lutathera plus octreotide LAR significantly extended median PFS to 22.8 months vs. 8.5 months with high-dose octreotide LAR in patients with newly diagnosed grade 2 and 3 advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs)1 What this great news means for NET patients is not yet clear, but the implications…

16 Jan 2024

By Ronny Allan

0 Comments

Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide Versus Observation in High-Risk Pancreatic Neuroendocrine Tumors (SWOG S2104)

Clinical Trials and ResearchCAPTEM, Pancreatic NET (PanNET)

What is SWOG S2104? A Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide Versus Observation in High-Risk Pancreatic Neuroendocrine TumorsPancreatic neuroendocrine tumors (pNETS) account for about 1-2% of all the pancreas tumors for which resection is the only curative intent modality, however, despite surgery, many patients will experience recurrence. Tumor size, positive lymph nodes and higher grade are prognostic factors for recurrence. The U.S. Neuroendocrine Tumor Study Group published a predictive score (Zaidi score but also see inclusion criteria) demonstrating that tumors with a score ≥6 had a 33% likelihood of recurrence by 24 months. Furthermore, it is…

12 Jan 2024

By Ronny Allan

1 Comment

FDA Accepts New Drug Application for Generic Lutetium Lu 177 Dotatate (177Lu-PNT2003) in GEP-NETs

Clinical Trials and Research, TreatmentGastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Generic drugs, Peptide receptor radionuclide therapy (PRRT), Radiolabelled somatostatin analogue, Somatostatin receptors (SSTR)

Breaking News. We have generic somatostatin analogues, generic targeted therapy, and I guess it was only a matter of time until we got generic PRRT (Radioligand Therapy) e.g. generic Lutetium Lu 177 dotatate. This news begins that process which is also based on a clinical trial which took place in Canada (195 participants) and which now appears to be complete. The announcement comes from US but if this is realised, you can expect it to be available in many other countries and continents where there is a market. This may even drive down prices and/or increase availability. The FDA has…

21 Dec 2023

By Ronny Allan

5 Comments

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

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

SAN DIEGO, Dec. 18, 2023 (GLOBE NEWSWIRE) -- Crinetics Pharmaceuticals, Inc. (Nasdaq: CRNX) today announced positive initial findings from its ongoing open-label Phase 2 carcinoid syndrome (CS) study of paltusotine, an oral, once-daily investigational compound being developed for the treatment of acromegaly and CS. “We are very encouraged by these strong initial findings in our Phase 2 study of paltusotine in people with carcinoid syndrome,” said Scott Struthers, Ph.D., founder and chief executive officer of Crinetics. “These initial results show the potential of paltusotine to significantly reduce both frequency and intensity of bowel movements and flushing, the key carcinoid syndrome…

18 Dec 2023

By Ronny Allan

6 Comments

Midgut neuroendocrine tumor patients have a depleted gut microbiome with a discriminative signature

Clinical Trials and Research, Patient AdvocacyCarcinoid syndrome, Gut Flora, Midgut, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET)

What is the gut microbiome? According to Cleveland Clinic, your gut microbiome is a microscopic world within the world of your larger body. The trillions of microorganisms that live there affect each other and their environment in various ways. They also appear to influence many aspects of your overall health, both within your digestive system and outside of it. If you read their summary here, you can understand some of the implications of this study. However, as the study concluded, midgut NET patients have an altered gut microbiome which could suggest a role in NET development and provide novel targets…

12 Dec 2023

By Ronny Allan

0 Comments

Novel Therapeutic Target for Pulmonary Neuroendocrine Tumours Uncovered

Clinical Trials and ResearchLung NETs

A culture of miniature neuroendocrine tumors. [Talya Dayton, copyright: Hubrecht Institute.] I'll flesh this out in due course, but this is something I'd like to track. Pulmonary NETs don't have as many treatments as Gastroenteropancreatic NETs (GEP NETs). Thanks for reading. Druggable growth dependencies and tumor evolution analysis in patient-derived organoids of neuroendocrine neoplasms from multiple body sites Talya L. Dayton Nicolas Alcala Laura Moonen Matthieu Foll Lynnette Fernández-Cuesta Hans Clevers Show all authors Show footnotes Open AccessDOI: https://doi.org/10.1016/j.ccell.2023.11.007Quick summary - click here Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of…

02 Dec 2023

By Ronny Allan

2 Comments

Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus

Clinical Trials and Research177Lu-Edotreotide (Solucin®), Afinitor, Bronchopulmonary Neuroendocrine Neoplasms (BP NEN), Carcinoid, Clinical trial, Everolimus, Lu 177 dotatate, Lung NETs, Peptide receptor radionuclide therapy (PRRT), PRRT, Somatostatin receptors (SSTR)

US Trial I was delighted to see this clinical trial which looks at the efficacy of PRRT (Lu177 dotatate) vs the efficacy of Everolimus (Afinitor). The latter is approved for the treatment of adult patients with progressive, well-differentiated non-functional, neuroendocrine tumors (NET) of gastrointestinal (GI) or lung origin with unresectable, locally advanced or metastatic disease (US FDA wording, Europe is similar). What is this trial? This phase II trial studies the effect of lutetium Lu 177 dotatate compared to the usual treatment (everolimus) in treating patients with somatostatin receptor positive bronchial neuroendocrine tumors that have spread to other places in…

14 Oct 2023

By Ronny Allan

5 Comments

Meet Edison® Histotripsy System – powerful bubbles

Clinical Trials and Research, Patient Advocacy, TreatmentAblation, Liver directed therapy, Liver metastases

Please read this before asking questionsHistotripsy is a new treatment, but it's an ablative technique rather than a drug. It can be equated to liver embolization or conventional tumour ablation but uses what would appear to be a more effective targeted therapy. It's early days, the fact that it has been approved by FDA (see wording below) is about all we know but this blog will be kept live. I get asked a lot of questions but some of the detail NET patients tend to ask is simply not available to me. 1. I do not know for sure which hospitals will…

02 Oct 2023

By Ronny Allan

3 Comments

Neuroendocrine Cancer Clinical Trial – Lutetium-177Lu (Satoreotide)

Clinical Trials and ResearchAntagonist, Ga68 PET/CT, JR11, Neuroendocrine cancer, PRRT, Satoreotide (Lutetium-177), Small cell lung cancer (SCLC), Somatostatin receptors (SSTR)

What is Satoreotide? It's an agonist treatment. i.e. a 'next generation' radiologand for Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds to both activated and unactivated somatostatin receptors which are upregulated on these tumours. There is far higher binding via this mechanism than standard octreotate. The technical name of the radiopharmaceutical is Satoreotide tetraxetan lutetium-177 (author's note, I'm guessing but it could be a variant of Lanreotide). Somatostatin type 2 (SST2) receptor is overexpressed in many around 80% of NETs, some NEC and in certain hard-to-treat cancers such as small cell lung cancer (SCLC) and neuroblastoma,…

28 Sep 2023

By Ronny Allan

0 Comments

First and only FDA-cleared, fully automated chromogranin A assay

A Spotlight on NENs - Testing Series, Clinical Trials and Research, Patient AdvocacyChromogranin A (CgA), Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET)

There has been controversy about the utility of Chromogranin A for many years now. Specialists have been critical about its use but to be fair even those less critical still confirm that alone it would not be trusted to formally diagnose Neuroendocrine Cancer. That said, it was still controversial when certain US guidelines were updated to recommend it is not regularly tested. It's well known for being a sensitive but non-specific marker for most tumours of Neuroendocrine type, the non-specificity is mostly due to the other conditions, some of which are highly prevalent in many countries, including but not limited to…

26 Aug 2023

By Ronny Allan

1 Comment

Phase 3 CABINET Clinical Trial – Cabozantinib for Advanced Neuroendocrine Tumours

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Afinitor, Cabometyx, Cabozantinib, CB-839, Chemotherapy, Cometriq, ENETS, Everolimus, Lung Cancer, Metastatic Neuroendocrine Cancer, mTOR inhibitor, Multi tyrosine kinase inhibitors (TKIs), Neuroendocrine cancer, Neuroendocrine tumour (NET), Pancreatic NET (PanNET), Paraganglioma, Pheochromocytoma, PI3K inhibitor, Poorly differentiated, Prostate Cancer, Proteasome inhibitors, Renal cell carcinoma (RCC), Sunitinib (Sutent), Tyrosine kinase inhibitor (TKI), Vascular endothelial growth factor (VEGF), Well differentiated

BREAKING NEWS - 24TH AUG 2023Exelixis Announces Remarkable Efficacy in CABINET Trial for Advanced Neuroendocrine TumorsOn August 24, 2023, Exelixis made an exciting announcement regarding the Phase 3 CABINET pivotal trial. This trial focused on evaluating the effectiveness of cabozantinib in treating advanced pancreatic and extra-pancreatic neuroendocrine tumors. The CABINET trial was a significant undertaking, involving multiple centers and enrolling a total of 290 patients who were divided into two groups.The trial progressed smoothly, but to everyone’s surprise, it was stopped early. The reason for this premature conclusion was the remarkable improvement in efficacy observed. The Alliance for Clinical Trials…

12 Aug 2023

By Ronny Allan

2 Comments

Lung cancer diagnosed early because of new tool

Clinical Trials and Research, Patient AdvocacyAtypical Lung NET, Large cell neuroendocrine carcinoma (LCNEC), Lung Cancer, Small cell lung cancer (SCLC), Typical lung NET

I'm a believer in science overtaking mortality figures and there is evidence of that already happening when you read the latest survival figures. But too many are still succumbing to this killer disease. I also believe that artificial intelligence (AI) has the potential to help. Even with cancers of the lung, where known causes are heavily linked to death rates, are decreasing but that is mainly due to preventative measures such as stopping smoking. However, not all cancers of the lung are caused by smoking. Most low-grade Lung NETs is a good example, there are others. I've had a flurry…

05 Aug 2023

By Ronny Allan

2 Comments

The Cancer Legacy of Steve Jobs?

Awareness, Clinical Trials and ResearchAdvanced neuroendocrine cancer, Neuroendocrine tumour (NET), Pancreatic cancer, Pancreatic NET (PanNET)

Just about everyone knows who Steve Jobs is but not many people have heard of Reed Jobs. Clearly a relative and is actually his son. Now aged 31, he wants to get into the cancer business via a venture capitalist initiative. The headline below looks great but it means cancer, not just Neuroendocrine Cancer (note the use of Steve Jobs' actual diagnosis).I first heard about this and switched off after the news article stated that Steve Jobs had Pancreatic Cancer. Don't get me wrong, I strongly believe that Pancreatic Cancer needs lots of attention and lots of funding and research. …

02 Aug 2023

By Ronny Allan

0 Comments

Phase 1 Clinical Trial AOH1996 for the Treatment of Refractory Solid Tumors

Clinical Trials and ResearchAOH1966, Clinical trial, Neuroendocrine cancer, Solid tumour

The City of Hope-developed small molecule AOH1996 targets a cancerous variant of the protein PCNA. In its mutated form, PCNA is critical in DNA replication and repair of all expanding tumors. Here we see untreated cancer cells (left) and cancer cells treated with AOH1996 (right) undergoing programmed cell death (violet). (Photo credit: City of Hope) This particular clinical trial for solid tumours has been widely reported in the news this week (July/august 2023). It is touted as a "cancer-killing pill" has appeared to "annihilate" solid tumours in early research - leaving healthy cells unaffected. Whether these are the words of…

23 Jul 2023

By Ronny Allan

0 Comments

A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

Clinical Trials and Research, Patient Advocacy, TreatmentBowel surgery, Curative surgery, Debulking surgery, Gastrointestinal NET (GI-NET), Laparoscopic surgery, Small intestine NET (SI NET), Surgery

A major challenge that cancer surgeons face currently is that there are no reliable methods to identify the tissue type during surgery (other than fast tracking tissue sampling). The surgical procedures, therefore, rely extensively on the experience and judgment of the surgeon to decide on how much tissue to remove around the tumor margins. Sometimes this can result in the removal of excessive healthy tissue. On the other hand, not removing some tumour cells can often need a follow-up surgery to remove residual cancer tissue. This just adds to patient morbidity and long-term detrimental effects on the patient’s outcome. The use…

01 Jun 2023

By Ronny Allan

2 Comments

Clinical Trial: Phase 1/2a Study of 23ME-00610 in Patients With Advanced Solid Malignancies (incl Neuroendocrine Neoplasms)

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Clinical trial, High grade neuroendocrine tumour (NET), Immunotherapy, Neuroendocrine carcinoma (NEC), Poorly differentiated

Who are 23andMe?I personally had not heard of 23andMe but many people in North America might have. When you first look at what they do, you can be excused for thinking they are just another 'Ancestry' company, but they are more than that. They also get involved in genetics and health. To quote their marketing "we’re all of these things". Read more here: About us - 23andMe But what I found most interesting is that they have a clinical trial involving Neuroendocrine Tumors using their product 23ME-00610. However, an analysis of the documentation available indicates it is aimed at Grade 3…

10 May 2023

By Ronny Allan

0 Comments

Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3) (Beta plus)

Clinical Trials and ResearchClinical trial, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Radiolabelled somatostatin analogue, Somatostatin receptors (SSTR), Terbium-161 (161Tb-DOTA-LM3)

Update 14th March 2024 - First-in-human administration of terbium-161-labelled somatostatin receptor subtype 2 antagonist ([161Tb]Tb-DOTA-LM3) in a patient with a metastatic neuroendocrine tumour of the ileumHere, the Basel sponsor reports on the first patient (78-year-old man) with a metastatic, hormone-active (carcinoid syndrome) ileal neuroendocrine tumour (G1, Ki-67, < 3%), who received a test infusion of 1 GBq [161Tb]Tb-DOTA-LM3 in an ongoing prospective Phase 0 study. So far, the patient received long-acting octreotide, which was stopped 2 months before [161Tb]Tb-DOTA-LM3 infusion.Read more by clicking hereFirst-in-human administration of terbium-161-labelled somatostatin receptor subtype 2 antagonist ([161Tb]Tb-DOTA-LM3) in a patient with a metastatic neuroendocrine…

24 Mar 2023

By Ronny Allan

0 Comments

Nuclidium wins award to study NET radiopharmaceutical – Phase 1 Clinical Trial of TraceNET (TM)

Clinical Trials and ResearchCu-61, Ga68-DOTATOC, Somatostatin receptors (SSTR), SSTR-PET, TraceNET

What is TraceNETTM TraceNETTM is a a novel copper-based 'radiodiagnostic' for detecting neuroendocrine tumours (NET). The PET imaging agent candidate is the diagnostic component of NUCLIDIUM’s theranostic program, which comprises a true theranostic pair for diagnosing and treating NET patients, leveraging the company’s unique copper-based approach. The Phase 1 program for the diagnostic is the first step in its clinical development and is planned to commence in the first half of 2023. Nuclidium’s TraceNETTM program aims to overcome key limitations of existing radiodiagnostics and their corresponding therapeutics by increasing the sensitivity and diagnostic accuracy of NET imaging, including detecting metastases, while…

16 Mar 2023

By Ronny Allan

0 Comments

Experimental drug for Gastric NET – Netazepide

Clinical Trials and Research, TreatmentAtrophic gastritis, Clinical trial, Gastric NET, Gastrin, Netazepide, Neuroendocrine tumour (NET)

Gastric NETs When I wrote my post entitled "Spotlight on Gastric Neuroendocrine Neoplasms", I explained what these were with some emphasis on the association with hypergastrinemia (elevated fasting serum gastrin levels) with Type 1 and 2 gNETs being differentiated by the settings in which this occurs. This oversecretion is not the same as so called carcinoid syndrome found in other gastrointestinal NETs. Many people with a Gastric NET will already have acid reflux related issues and many will be taking medications such as proton pump inhibitors. But I was surprised to find there was not an approved targeted medication that…

09 Mar 2023

By Ronny Allan

1 Comment

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials and Research, InspirationAdvanced neuroendocrine cancer, Cancer of unknown primary (CUP), Cancer research, Differentiation, Poorly differentiated, Well differentiated

It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that. But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease. There are others but I find these are the most common scenarios I see in younger people. For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to…

05 Mar 2023

By Ronny Allan

0 Comments

Treatment for Neuroendocrine Cancer: Beware of the alternatives

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAlternative medicine, Alternative therapies

The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say. I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to…

18 Feb 2023

By Ronny Allan

0 Comments

Belzutifan for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), or Von Hippel-Lindau (VHL) Disease-Associated Tumors

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Clinical trial, Hereditary pheochromocytoma/paraganglioma syndromes, Pancreatic NET (PanNET), Paraganglioma, Pheochromocytoma, Von Hippel-Lindau (VHL) Syndrome

What is von Hippel-Lindau disease (VHL)?Von Hippel-Lindau disease (VHL) is an autosomal dominant disease that can predispose individuals to multiple neoplasms. Germline pathogenic variants in the VHL gene predispose individuals to specific types of benign tumors, malignant tumors, and cysts in many organ systems. These include central nervous system hemangioblastomas; retinal hemangioblastomas; clear cell renal cell carcinomas and renal cysts; pheochromocytomas, cysts, cystadenomas, and neuroendocrine tumors of the pancreas; endolymphatic sac tumors; and cystadenomas of the epididymis. What is Belzutifan (Welireg)?It is an oral hypoxia-inducible factor-2 alpha (HIF-2α) inhibitor. As an inhibitor of HIF-2α, belzutifan reduces transcription and expression of HIF-2α target genes associated with cellular proliferation, angiogenesis and…

17 Feb 2023

By Ronny Allan

0 Comments

A Phase II Clinical Trial of Nivolumab and Temozolomide for Neuroendocrine Neoplasms

Clinical Trials and ResearchChemotherapy, Clinical trial, High Grade NEC, Immunotherapy, Large cell neuroendocrine carcinoma (LCNEC), Lung NETs, Nivolumab (Opdivo), Pancreatic NET (PanNET), Small cell lung cancer (SCLC), Temozolomide (Temodal)

What is Nivolumab (Opdivo)Nivolumab is a type of cancer treatment drug called an immunotherapy. It is a treatment for a number of different types of cancer. You might have it as part of a clinical trial for other types of cancer.What is Temozolomide (Temodal)Temozolomide is a type of chemotherapy. It is well known in Neuroendocrine Cancer as the TEM in CAPTEMTrial SummaryThe purpose of the trial. Treatment options are sometimes limited in patients with metastatic neuroendocrine neoplasms (NEN). The primary endpoint was response rate (using RECIST 1.1). Secondary endpoints included progression-free survival (PFS), overall survival (OS), and safety. Immune profiling…

31 Jan 2023

By Ronny Allan

0 Comments

Phase I study of procaspase-activating compound-1 (PAC-1) in the treatment of advanced malignancies (incl NET)

Clinical Trials and ResearchClinical trial, Procaspase-activating compound-1 (PAC-1)

Trial SummaryThis interesting trial is a multi-cancer effort including NET. The phase I clinical trial of Procaspase Activating Compound-1 (PAC-1), a drug that spurs programmed cell death in cancer cells, found only minor side effects in patients with end-stage cancers. The drug stalled the growth of tumors in the five people in the trial with neuroendocrine cancers and reduced tumor size in two of those patients. It also showed some therapeutic activity against sarcomas, scientists and clinicians report in the British Journal of Cancer. As of March 1, 2019, only patients with neuroendocrine tumors will be enrolled in Component 1…

14 Jan 2023

By Ronny Allan

0 Comments

Cancer Ablation

Clinical Trials and Research, Patient Advocacy, TreatmentAblation, High-intensity focused ultrasound (HIFU), Histotripsy, Radio Frequency Ablation (RFA), Stereotactic body radiotherapy (SBRT), Stereotactic radiosurgery (SRS)

What is Cancer Ablation? This is a minimally invasive surgical method to treat solid cancers. Special probes are used to “burn” or “freeze” cancers. Computed Tomography (CT), Ultrasound (US) or Magnetic Resonance Imaging (MRI) is used to guide and position the needle probe into the tumour. This requires only a tiny hole, usually less than 3 mm via which the probe is introduced. When the probe is within the cancer it is attached to a generator which “burns” or “freezes” the cancer. “Burning” refers to increasing the temperature of the tumour to such a level that cancer cells die. This…

08 Jan 2023

By Ronny Allan

2 Comments

EUS Guided Ablation for small pancreatic NETs (Less than 2cm)

Clinical Trials and Research, Patient AdvocacyAblation, Endoscopic ultrasound (EUS), Pancreatic NET (PanNET), Surgery

To burn or not to burn?I once wrote a post about Pancreatic NET "to cut or not to cut". You can read that here. Surgery for small pancreatic NETs remains controversial with most guidelines and study guidelines recommending surveillance for small primary tumours less than 2cm. There are exceptions to that, e.g. preventative surgery if the tumour is threatening important vessels and for functional cases where the surgery is palliative in nature. Contrast that against some patient perspectives where they just want it cut out (and some will 'surgeon-shop' until they find someone who will).Most pancreatic NET are lower grades…

03 Jan 2023

By Ronny Allan

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

ReviewIn 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost. It takes 3-4 years to get a million hits based on current performance. To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened! I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal but 2022 has seen some pickup. Some of it is due to less writing but much…

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

Background It'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…

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 a while. But the next generation equipment and techniques are gradually being deployed. It's a confusing area with many synonyms which I found when I wrote about the subject in a treatment summary for patients. Some of the sub-components/synonyms may be familiar to you and are often used interchangeably with SBRT; but are actually a brand name (e.g.Cyberknife) or a type (e.g. Proton Beam). You will not find SBRT mentioned in any Neuroendocrine Neoplasms (NENs) guidelines and that's because it is not a "standard of care"…

01 Dec 2022

By Ronny Allan

0 Comments

In the news – new Neuroendocrine Tumour PET Fluorine-18 based ‘tracer’

Clinical Trials and Research, Patient AdvocacyFluorine-18, SSTR-PET

This should be of interest, particularly to Canadians. (Not to be confused with 18F-FDG which is a different scan). For people waiting for imaging tests to diagnose neuroendocrine cancer, time is of the essence. Now, thanks to researchers at the University of Alberta, a new medical imaging agent for PET scans promises to reduce wait times, while costing less to produce and possibly revealing more of some types of cancer tumors. Ralf Schirrmacher, an oncology imaging professor and member of the Cancer Research Institute of Northern Alberta, and his team at the Medical Isotope and Cyclotron Facility on the U…

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…

06 Oct 2022

By Ronny Allan

3 Comments

Study of Lu-177-DOTATATE (Lutathera) in Combination With PARP Inhibitors in Inoperable/Metastatic Gastroenteropancreatic Neuroendocrine Tumors (GEP-NET)

Clinical Trials and ResearchLutathera, Olaparib, PARP Inhibitor, Peptide receptor radionuclide therapy (PRRT), PRRT, Talazoparib

PARP inhibitor with PRRT clinical trials update. 1. NIH Trial SummaryA phase I/II clinical trial at the NIH Clinical Center evaluates the effectiveness of a combination of two agents that may work in complementary ways to target inoperable or metastatic neuroendocrine tumoors. One agent, lutathera, emits radiation inside the body, causing DNA damage, and the second agent, olaparib, a PARP inhibitor, blocks the repair of DNA breaks. The trial commences in Oct 2022 running for approximately 2 years 9 months. What is Lutathera?It's a type of Peptide Receptor Radionuclide Therapy (PRRT) and has been in use for some years as a standard of care…

03 Oct 2022

By Ronny Allan

2 Comments

Neuroendocrine Cancer: Glossary of Terms

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

Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list:1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list.2. For numerical terms, please click on the hashtag (#) symbol in the A-to-Z strip.3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on…

30 Sep 2022

By Ronny Allan

0 Comments

Prospective Phase II Trial of Prognostication by 68Ga-NOTA-AE105 uPAR PET in Patients with Neuroendocrine Neoplasms: Implications for uPAR-Targeted Therapy

Clinical Trials and ResearchBiomarker, Peptide receptor radionuclide therapy (PRRT), PET Scan

Summary A novel PET radiotracer can accurately assess the presence of a biomarker that indicates the level of tumor aggressiveness in neuroendocrine neoplasms (NENs). According to research published in the September issue of The Journal of Nuclear Medicine, the detection of the biomarker provides useful information for physicians to provide personalized care for patients with NENs and may also serve as a potential target for peptide radionuclide therapy (PRRT) for NEN patients.What is uPAR? Tumorigenesis (the production or formation of a tumour or tumours) is closely related to the loss of control of many genes. Urokinase-type plasminogen activator receptor (uPAR), a glycolipid-anchored…

23 Sep 2022

By Ronny Allan

0 Comments

A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)

Clinical Trials and ResearchNeuroendocrine cancer, Neuroendocrine neoplasm (NEN), Oncolytic virus, Solid tumour

A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)Neuroendocrine Neoplasms are considered solid tumours.Imugene Limited, a clinical-stage immuno-oncology company, and City of Hope, one of the largest cancer research and treatment organizations in the United States, today announced that the first patient was dosed in Phase 1 clinical trial evaluating the safety of novel cancer-killing virus CF33-hNIS VAXINIA when used in people with advanced solid tumors. The City of Hope-developed oncolytic virus has been shown to shrink colon, lung, breast, ovarian and pancreatic cancer tumors…

14 Sep 2022

By Ronny Allan

0 Comments

Clinical Trial: Phase 1b/3 Targeted Alpha-Emitter PRRT RYZ101 (Ac225)

Clinical Trials and Research225Ac, Ac-225, Advanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Small cell lung cancer (SCLC), Targeted alpha-emitter therapy (TAT)

Update 27th Dec 2023. Bristol Myers Squibb Adds Premier Radiopharmaceutical Platform with Acquisition of RayzeBio This is a significant acquisition and shows the importance and percevied potential of radioligand therapy (RLT) in the commercial pharma world. BMS is a huge company and they paid a huge price for this alpha-emmitter therapy, probably looking forward to exploiting the vast potential in NET, Prostate and other cancer types being considered for treatment using RLTs. Click on the link below to read more Bristol Myers Squibb - Bristol Myers Squibb Adds Premier Radiopharmaceutical Platform with Acquisition of RayzeBio (bms.com) [glossary_dictionary term=""][glossary_thesaurus term=""][glossary_translate term=""]Update…

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…

20 Jul 2022

By Ronny Allan

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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)

BackgroundWell 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 kill cancer…

19 Jun 2022

By Ronny Allan

0 Comments

Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors

Clinical Trials and ResearchClinical trial, Lutathera, Neuroendocrine tumour (NET), Peptide receptor radionuclide therapy (PRRT), PRRT, Triapine

What is PRRT? I'm guessing most of my readers know what Peptide Receptor Radiotherapy (PRRT) is. But for those new to this field, read more here What is Triapine? Triapine is a ribonucleotide reductase (RNR) inhibitor, I.e. it helps repair DNA. When I research this drug, I can see it is used in numerous examples of clinical trials in an anti-cancer setting alongside radiotherapy and chemotherapy, in many cancers. Triapine in NET There is currently a trial of Triapine with Lutathera (PRRT) (11 major US hospitals). This study was testing the hypothesis that triapine is an effective radiation sensitizer that…

15 Jun 2022

By Ronny Allan

0 Comments

CAPTEM for Neuroendocrine Tumours

Clinical Trials and ResearchAdvanced 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. Xeloda is a type of antimetabolite. Also called Xeloda.Temozolomide is an oral drug used to treat adults with certain types of brain tumors. It is also being studied in the treatment of other types of cancer including in combination…

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 which destroys cancer using soundwaves

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

Illustration of histotripsy technology. Image courtesy of Medicine at Michigan Magazine. BREAKING NEWS 9TH OCT 2023 - US FDA APPROVES THE USE OF HISTOTRIPSY IN HUMANS FOR LIVER TREATMENTRead here Tumor-destroying sound waves receive FDA approval for liver treatment in humans | University of Michigan News (umich.edu)..... and then read about Histotripsy and the clinical trials belowGo straight to where this treatment is live That's easy ...... Meet Edison! ORIGINAL ARTICLE FOLLOWS ......A new technique that destroys cancer using soundwaves. It also spurs the immune system to kill off any of the tumour left behind, scientists have revealed. The non-invasive treatment only…

16 Mar 2022

By Ronny Allan

4 Comments

Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Clinical Trials and Research, Patient Advocacy, TreatmentCarcinoid syndrome, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Lanreotide, NET syndromes, Neuroendocrine tumour (NET), 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). An Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide) - now that sounds exiting. It doesn't seem that long since we got the new improved injection delivery system for the current model of Lanreotide. I had to look at my blog articles for the announcement of that and was surprised it was way back in 2019. It may be a shorter time period for many…

10 Mar 2022

By Ronny Allan

5 Comments

Clinical Trial: Mycapssa (octreotide capsules) for Neuroendocrine Tumours

Clinical Trials and Research, TreatmentMYCAPSSA , Octreotide, Somatostatin analogues

The delayed-release capsules contain 20mg of octreotide. This is a placeholder section for the Phase 3 Mycapssa® (octreotide capsules) trial for NETs. I will as usual bring it to you when I have the information. Update 20th Dec 2022The European Medicines Agency's (EMA) Committee for Orphan Medicinal Products (COMP) has adopted a positive opinion for orphan designation for the use of Mycapssa® in the treatment of carcinoid syndrome associated with neuroendocrine tumors (NET).Orphan designation in the European Union (EU) is granted by the European Commission (EC) within 30 days of a positive opinion being issued by the COMP. This designation provides certain regulatory and…

Category: Clinical Trials and Research