One of the common question areas I see in my patient group of 10,000+ members is about the use of somatostatin analogues (SSAs) prior to, during and after treatment with Peptide Receptor Radionuclide Therapy (PRRT). 

On a similar subject, I also see people asking about stopping SSAs long term regardless of PRRT, particularly if they are NED and stable. People also ask about individual patients who have decided to stop them and how they managed etc.  Clearly these are difficult discussions and anyone reading should be listening to their doctors, not mimicking what they read on patient groups. But they are both interesting areas and thus why I am posting details of a clinical trial which is looking at the consequence of such actions in a controlled manner – but based on stopping them after PRRT.  

For those reading, you will note the same trial is being sponsored by the The Australasian Gastro-Intestinal Trials Group (AGITG) and the Canadian Cancer Trials Group (CCTG). 

The STOPNET clinical trial, chaired by Dr Matthew Burge, is investigating whether monthly injections are still needed for patients with neuroendocrine tumours (NETs), after they’ve received radiation therapy.  The trial is not saying you don’t need SSAs, they are looking at whether they are needed after PRRT.  Some of the assumptions and logic appear to be based on the difficulties of visiting hospitals to receive SSAs, so this might not be relevant to smaller countries and home injection arrangements.  

Dr Burge explains: “Currently, patients get these injections once a month, often for a long time. But after successful radiation, we don’t know if they’re still necessary. If STOPNET is successful, it could make a huge difference for NET patients!”

Going forward, I will be following this trial to keep you updated via this post. 

If you’re in Canada or Australia and you think this trial is relevant to your situation, please contact your Specialist to discuss further.

Note: The US clinical trials database sponsored by NIH is referred (NCT06345079) but please note the list of trial locations for Canada and all the locations planned for Australia were not included at the time of writing this blog post. The Canadian group does say that the NE.2 study (their name) is currently enrolling patients at cancer centres in Canada.  The first site to open was Brisbane and Fiona Stanley Hospital, Royal North Shore Hospital, Wollongong Hospital, Peter MacCallum Cancer Centre and The Queen Elizabeth Hospital due to be activated in the coming months.  However the current NIH trial entry (NCT06345079 – see Reference 3 below) will still be useful to those in Canada and Australia looking for more information.  I guess the current NIH entry will be updated in due course and once known, I will update this blog post.