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

Disclaimer:
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

I’ve been luckier than some. I suspect I was treated earlier despite being diagnosed at stage IV (go figure). I had 3 surgeries 2010-2012 and since then only treatment with a 28 day somatostatin analogue (Lanreotide) at a dose of 90mg. While my surgeries have come with some complications, it is a common approach to treating operable small intestine NETs (I see no signs of any guideline changes in the foreseeable future). In May 2026, I received my 200th injection. For the record, was diagnosed with carcinoid syndrome back in 2010 with elevated 5-HIAA. That cleared up after surgery and commencement of Lanreotide. I’m non-syndromic with only post surgical/treatment symptoms and live a relatively normal life.

After 10 years of relative stability, I have thought many times whether I can stop Lanreotide, or more accurately, assessed the risks of stopping lanreotide. On each occasion, I came to the conclusion that it the old phrase “better the devil you know” is the way forward. i.e. it is safer to stick with a familiar, imperfect situation than to risk an unknown alternative that could be significantly worse or it suggests that enduring a known problem is preferable to gambling on the unpredictable. One of the challenges is that the only long term data we have is from phase 3 clinical trials so scientifically proving that lanreotide works for 16 years outside of a formal clinical trial setting (including a phase IV post marketing surveillance study is pretty difficult. For now I’ll leave it.

There has been some clinical comment about the need for NET patients to remain on somatostatin analogues following treatment using PRRT (for context and the uninitiated), it’s effectively a type of radiotherapy using somatostatin analogues to transport radiation to tumours via somatostatin receptors). But I have since found a clinical trial looking at that very scenario. For those interested, please note that the outcome of the study may still be to continue with somatostatin analogues, that’s reflected in the trial design.

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

Background: PRRT is a standard therapeutic option for patients with metastatic well-differentiated somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumours (GEP-NETs) following progression on SSA. It is uncertain whether current practice of continuing SSA after commencing PRRT is beneficial, especially in non-functioning NETs. Studies by Yordanova et al. (2018) and Sygula et al. (2022) have included heterogenous study populations and yielded conflicting results.

Methods: STOPNET is a prospective, randomized, non-comparative, open-label, multi-center phase II trial led by the AGITG in collaboration with the Canadian Cancer Trials Group (CCTG) under the Commonwealth Neuroendocrine Tumor research collaborative (CommNETS). The trial aims to evaluate the outcomes of SSA cessation or continuation in patients with GEP-NETs undergoing PRRT after progression on SSA. The co-primary endpoints are 20-month PFS and feasibility for a phase III trial, assessed by recruitment over a 24-month period & patient acceptance of SSA cessation.

STOPNET aims to explore outcomes in grade 1 and 2 mid, hind gut or pancreatic neuroendocrine tumours, that have progressed on SSA therapy, are eligible to receive PRRT and in whom the SSA is either continued or ceased after PRRT is commenced.

The trial sponsor is the Australasian Gastro-Intestinal Trials Group in collaboration with the Canadian Cancer Trials Group.

Link to clinical trials document – click here

See the sponsor’s website – click here

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

General Clinical Trials Disclaimer

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided in the clinical trials document. It’s very important to check the trial inclusion and exclusion criteria before making any contact. If you need questions, the articles here is very useful Questions to Ask About Clinical Trials | Cancer.Net

The inclusion of any trial within this blog should not be taken as a recommendation by Ronny Allan.

Finally

Whenever I post about a trial or study, some people get excited without understanding that these new treatments and capabilities can very often take years to come to fruition and it’s also possible that clinical trials can be halted, or that national approval agencies will not approve the final product. Plus, not everyone will be eligible, so always check the exclusion and inclusion criteria in the relevant clinical trials document. Please bear that in mind when reading studies/clinical trials posted on RonnyAllan.NET