Coping with lockdown
During June, I decided I continued to be active outside despite the fact I see myself as someone at risk, not just because of the Neuroendocrine Cancer but also due to a history of chest infections and mild asthma. Mental health can be as important as physical health in times of stress and anxiety so I took to the outdoors to tell my story of how I was coping. Of course the outdoors is also a garden (yard) and so that counts too! 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.
Things must be looking up as I’ve had a haircut. 
June Blog Activity
I seem to have managed to write quite a few blog posts in June, more than ever. Things must be getting back to normal. If case you missed any, check them out here:
Neuroendocrine Cancer Clinical Trial – Lutetium-177Lu (Satoreotide)
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
A review of September 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
On my website RonnyAllan.NET, September was an interesting month because I had pushed out some blogs before I went on a planned overseas holiday from
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
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. However, it’s great that our family can now visit us at home providing we practice good social distancing outside the house. 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. Currently looking at half a week up on the east coast of England exploring the coast of East Anglia.
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!
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
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 on the MENETS website. I met Mike in Barcelona – he still owes me a Creon!
Thanks for all your support in June 2020, it’s really much appreciated.
Looking forward to a much safer July. Go on, try the share button!
Ronny
Newsletter
Some posts needing love:
