Welcome to my fourth ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).
February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don’t have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat). Thank you all so much ♥
January’s success also led to increased Facebook followers and I broke through the 4000 milestone with a plan to reach 5000 by the end of the year or before. If I grew at January’s rate, it could easily be 6000 but that’s probably wishful thinking!
The month ended with a bang! The long-awaited FDA approval of ‘XERMELO’ (Telotristat Ethyl) was announced yesterday. Check out my blog which has all the links you need in one area. Click here to read
New Blogs Published
Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline. So, ICYMI …….here’s a summary with links:
- My Jan Newsletter!
- Neuroendocrine Cancer: To cut or not to cut? – This blog had a fantastic response and it’s clearly a topical subject! I had more people contact me privately rather than publicly which was interesting.
- Things not to say to someone with cancer – topical subject, so many diverse opinions! Great though provoking video too.
- 25 Life Lessons From a Two-Time Cancer Survivor – a diversion to someone else’s post but another blog which had a great response.
- Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD – very useful progress report from an experienced NET doctor.
- It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial) – I had one of those ‘cancerversaries’ with a 5 years since my last (perhaps not final!) surgery. Lymph nodes and thyroid mentioned.
Other News in Feb 2017
New Audiences for NET Cancer. From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.
- I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving. I reached 100 email subscribers today!
- I’m making new friends in the interventional radiologist community having been invited to join their twitter chat. That turned out to be profitable as I won $40 of Starbucks e-gifts for being a quick tweeter! I now have some new friends who are producing a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do!
- I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum. I’ll be reporting more on this in the coming weeks.
Patients Included. A new campaign for 2017. I’m very excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I’m being sponsored by the International Neuroendocrine Cancer Alliance (INCA). I’ll be tweeting and posting stuff live from the conference, look out for this.
Blog Milestone. Accelerated viewing figures should put me into a quarter of a million blog views by the end of this month! Thank you all so much ♥ Keep sharing!
Facebook Milestone. My Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested. The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.
I’m expanding into Instagram to see how that goes. Initially I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! You can follow me here: Click here to go to my Instagram page
- Facebook – 4213. This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach). Please also join my 2017 awareness campaign event here (select ‘Going’)
- Twitter – 3684 / 2836 Follow me here @RonnyAllan1 / @NETCancerBlog
- Total Blog Views: 239,686
- Blog with most views: 7,888 – The Anatomy of Neuroendocrine Cancer
- Most blog views in one day: 2043 on 15 Jan 2017. Why the spike? ….. “The Anatomy of Neuroendocrine Cancer”
- Most blog views in one month: 19,186 in Jan 2017. Why the spike? …. “The Anatomy of Neuroendocrine Cancer” and “Ignore this post about Neuroendocrine Cancer“
Where did February Blog views come from? – Top 10 countries:
For interest the 10 Ten Facebook followers by Country:
Thanks for your great support in February.
Hey Guys, I’m also active on Facebook. Like my page for even more news.
My Diagnosis and Treatment History
9 thoughts on “NETwork with Ronny © – Newsletter February 2017”
Ronny, are you commenting on the draft NICE proposal not to recommend PRRT? It’s on the Net Patient Foundation website under News.
To be honest, the data already submitted is fairly comprehensive, there is little to add other than a “whinge”.
… and maybe the patient ‘voice’? It’s obviously a cost issue, rather than effectiveness.
Your site is superb by the way, thank you for doing this for us all.
thanks – you sparked me into life, I submitted a balanced comment but readable between the lines as “seriously” 🙂
Did you see this good news?
Hope NICE see it too!
Yes thanks, it’s in my latest live blog on the subject. https://ronnyallan.com/2017/05/08/waiting-on-lu-177-prrt-theres-light-at-the-end-of-the-tunnel/
Many thanks for the comment. Been a long wait in USA and NICE playing a game in UK!
Excellent resource. Stay strong and keep sharing
Keep up the good work Ronny👍😃