Newsletter from Ronny Allan - 13th March 2023
Welcome to my new template newsletter compiled using WordPress (my blog app). This is the 2nd in this format, and I will continue in the absence of a Newsletter app that meets my needs. It's been another busy month as you will see below. But please take the time to read through as I can almost guarantee there will be something you missed and want to read and share! Some of the items below will make you laugh but others may make you cry.
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My award-winning blog is central to everything I do, without it, there is no Facebook, twitter or private group. It follows that supporting my blog is also supporting those other outlets. The widget below displays the last 9 published posts with lead photo and short description plus the ability to share it on your social media or another outlet.
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
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Milestone Reached
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Public Page "Neuroendocrine Cancer"
This is my biggest page with over 12,000 followers. I normally post technical and awareness stuff on this page. Please ensure you have LIKED this page to see the feed. The lead picture above is of a recent popular post; however, the link will take you to the public page where you can browse the site to find something you like.
Public Page "Ronny Allan"
This is my named page with over 7,000 followers. I normally post about my journey from diagnosis to where I am today occasionally venturing into my past life before cancer. I do post a lot of travel stuff on here. Please ensure you have FOLLOWED this page to see the feed.
Public Page "World Neuroendocrine Cancer Day"
This is my new page with over 1300 followers (currently). I intend building this up for campaigning purposes. Please ensure you have LIKED this page to see the feed. The lead picture was a very popular post on this page.
Follow me on Twitter (click on “My Tweets” to go to my twitter profile)
My TweetsI write about clinical trials all the time. Normally as a standalone blog post. Each one is indexed using a Clinical Trial category. Below you will find a blue box which links to all the post categorised as pertaining to clinical trials. If you want me to write about a particular trial just contact me.
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.
I have the biggest Facebook support group in the world for Neuroendocrine Cancer. It is rules based but also educational based. It is open to patients and/or their primary supporter. Click the green box below to join but you must answer all questions otherwise you will be delayed in joining or not accepted.
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 as they are not members of the private group or followers of my sites in any official capacity. 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.
A cup of tea
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
Thanks for reading. I leave you with one post which is fast becoming the most popular one. It covers the heterogeneity of Neuroendocrine Neoplasms which is extremely important if you want to be understood and understand others in patient groups and pages.
