Not surprisingly, news about Neuroendocrine Cancer has been a bit slow but I sense that things are starting to pick up. Here’s a few items I picked up during July from my google alerts or from twitter (a key source for me to hear about what’s happening).
1. 64Cu DOTATATE PET scans. This is an alternative scan that’s been in use in Europe but is undergoing trials in US – it has some advantages in particular a more logistically efficient generator system than the Ga68 PET. There’s been an announcement of an expanded access program in US providing access to nuclear PET scans for NET patients including those not yet formally diagnosed but who are suspicious for NETs. Read more by clicking here.
2. Long term NET study. This sounds like an amazing study designed to generate more understanding of the disease which may help others in the future. There’s limited placed and the contact details can be found in this Facebook post.
3, XERMELO (Telotristat Ethyl) has new owners. “In a move that Lexicon Pharmaceuticals Inc. chief Lonnel Coats said will focus the company on its phase II neuropathic pain program, The Woodlands, Texas-based venture has agreed to sell one of its two approved products, the carcinoid syndrome diarrhea therapy Xermelo (telotristat ethyl), to Tersera Therapeutics LLC”. I don’t expect this to make any difference to the drug or its supply – business as usual. The outer package may change to reflect new owners but the brand name XERMELO will most likely be part of the sale. Read more by clicking here.
4. Update on the Uppsala virus trial (AdVince). After 2 years of silence, an update on the Uppsala Oncolytic Virus trial. The candidate drug called AdVince has so far been tested in six patients in Sweden by Prof Essand, who is one of the two largest shareholders in Elicera. The company has now opened a second clinical site in Tubingen in Germany and is gearing up for a trial of 12 patients. However, this remains a crowdfunding campaign. I mention this not because I’m suggesting a donation, but because it’s not the normal way clinical trials are funded. Read more by clicking here.
During July, I was quite active both on my website and looking after myself. It’s important in these times to keep active and not let everything get on top of you. We all have different ways of dealing with this and I hope some of you have found solace or advice in my private group or even just reading my various blog posts or on my public Facebook sites. I still see myself as someone at risk, but there are other risks at play here – mental health can be as important as physical health in times of stress and anxiety. Back in March I told the story of my own symptomatic period and perhaps one day I might find out if I have antibodies when I’m tested accordingly. You can read this COVID-19 diary by clicking here. I also continued my diary until the middle of July with 12 episodes which were very popular when published on my public Facebook page. You can read Episode 12 by clicking here and it contains links to Episodes 1 through to 11. It might also give you some holiday or daytrip ideas if you’re planning!
And of course not forgetting my 10 year ‘cancerversary’ of my diagnosis on 26th July. I can tell you now I had no idea I might make this date and it took me a few years before I had the confidence to think it was possible.
Despite some fairly big relaxations to the UK lockdown rules, I have not changed my cautionary approach too much, still staying away from towns and shopping – although I’m gradually reintroducing to some locations where I feel safe. However, it’s great that our family can now visit us at home providing we practice good social distancing. We’ve since had a few visits and vice versa.
We are now in serious holiday mode but local days out plus a few days here and there. We are booked to visit Cambridgeshire and the Yorkshire in August, two separate trips. I will post some stories about these adventures as normal on my public Facebook page.
I was quite busy pushing out new stuff, partly trying to get things back to normal. You can see a sample of some of the July posts below – take a look, each one has its own share button to various social media platforms. Share with others please.
Vitamin D deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) — but that does not automatically mean your deficiency is caused by
Words are very important to cancer patients, some people hang their hats on them and put their feet up, and some people google them until
Overview Many thanks for the support in January and February 2026. This is a double month newsletter due to my 27 day holiday! 2026 Blog
Vitamin B12 deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) – what that means is there is a chance your deficiency as
When I was a young lad, I didn’t seem to have a fear of heights, not that I got many chances to test it but
When I was diagnosed with metastatic Neuroendocrine Cancer in 2010, there’s a lot of milestones I doubted I would reach. One is today and I
A Phase 2/3, Multicenter, Randomized Open-Label Study of Zanzalintinib vs Everolimus in Participants With Previously Treated, Unresectable, Locally Advanced or Metastatic Neuroendocrine Tumors. The primary purpose
Long-axial field-of-view (LAFOV) systems have changed the field of molecular imaging. Since their introduction, many PET centres have installed these next-generation digital systems to provide
Crinetics Announces First Patient Dosed in Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumours and Other Somatostatin Receptor 2-Expressing Tumours Read the
Here is the monthly summary of December 2025 on RonnyAllan.NET – Every share helps someone understand or even work towards a diagnosis, discovery of the
Summary of 2025 from Ronny It was a good year for my advocacy work but a difficult year personally which had some impact on my
15 Christmas celebrations since diagnosis. A thankful statement My Facebook memories today are full of Christmas activities including my first Christmas following diagnosis of advanced
Website. Some of you will also have noticed a change in the layout of my website to include more menus for easier navigation and more sharing buttons to help you share what you like and find useful for others. Thanks if you’re using them already. If you wanted to practice, you’ll see them at the top and bottom of this newsletter – share away!
Twitter. I’m quieter on twitter which is currently quite depressing – I hadn’t realised how many trolls there on that medium but I guess many people remain frustrated by COVID-19 and many other political issues. Still sharing my twitter newsletters though – sign up here.
Email Newsletters. I’m still learning how to release newsletters like this one plus other ad hoc stuff, I should have that in place by the next monthly iteration – look out for a new email template, then you’ll know! You can sign up for these newsletters in the form elsewhere in the side or bottom of the post – it takes around 5 seconds!
Private Facebook Group
You can join here, open to patients and their primary caregivers/carers/supporters. 
Neuroendocrine Cancer Definitions. I continue to work on my A to Z facility and making progress – I now have a structure with many definitions already linked to at least one blog post. It’s quite usable if you just wanted to find an article containing a particular term. I’m currently getting rid of unwanted terms and updating new ones to link to my website. Try it out, you might be surprised how useful it is despite its ‘in construction’ condition. In the database, click a term and it will currently take you to the posts containing that ‘tag’ and where I’ve populated so far, a short explanation. The A to Z of Neuroendocrine Cancer
Looking forward to a much safer July. Go on, try the share button!
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