External news of interest
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.
Coping with lockdown
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.
Routine Living
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.
External work
- Early in the lockdown, I was interviewed over the telephone by a Pharma company after writing an article about their product currently in clinical trials. This was a surprise call but was happy to help. You can read the interview above in one of the posts released in June or just click here.
- I made some short patient videos about coping with living under COVID-19. If they get published, I’m sure you’ll get to see it. Stay tuned.
- I took part in a podcast interview for a US based patient support site – awaiting publication. Stay tuned.
- I’ve been invited to take part in an online NET conference organised by the Middle East NET Society (MENETS). This is a virtual online event where the speakers will be well known NET Specialists and patients. I think my talk is centred around “Patient Orientation”. MENETS is in the process of validating schedules and will be ready to publish the initial agenda by the end of July 2020. In the meantime, you can save the date – click here for more details. Very grateful to my friend Mike Rosenberg for inviting me to speak and for adding my website alongside other illustrious organisations/individuals on the MENETS website.
July Blog Activity
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.
Never mind the Bollocks – here’s the cancer
I don’t tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to
First and only FDA-cleared, fully automated chromogranin A assay
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
Neuroendocrine Cancer: Question, Clarify, Confirm
One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined
Clinical Trial – Lutathera NETTER-2 Important Update
UPDATE – Sep 25th, 2023 – Novartis radioligand therapy Lutathera® demonstrated statistically significant and clinically meaningful progression-free survival in first line advanced gastroenteropancreatic neuroendocrine tumors
Lanreotide: Ipsen injection devices vs generic injection devices
Whenever I get a chance to talk to a pharma involved in somatostatin analogue injection devices, I tell them one very important thing …… “To
Cancer doesn’t take holidays (but I do)
Glen Etive Scotland in 2018 After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my ‘big surgery’, holidays
Update from Ronny Allan: No evidence of progressive disease at any site
Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site”. Very pleased! With incurable but treatable cancers such as
Exercise is Medicine
Exercise is medicine. Clearly I need to be careful with that statement given my aversion for cancer myths. However, those who know me will totally
Jimmy Buffett 1946-2023 – Neuroendocrine Carcinoma (Merkel Cell Carcinoma)
US singer-songwriter Jimmy Buffett, best known for his 1970’s hit Margaritaville, has died aged 76. “Jimmy passed away peacefully on the night of September 1
Passive patient or active advocate?
I’ve been researching Neuroendocrine Cancer for some time now. Why do I do this? Whilst I have a great medical team, I’d also like to
Childhood Cancer Awareness Month – Neuroendocrine Cancer (featuring Elizabeth)
September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many childhood cancer articles. You may not see one
A review of August 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
On my website RonnyAllan.NET, August was as quiet as July but in the second half, I accelerated publication of some posts. The month was also
Website and Social Media updates
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
Thanks for all your support in July 2020, it’s really much appreciated.
Looking forward to a much safer July. Go on, try the share button!
Ronny
