Welcome to my monthly ‘Community’ newsletter. This is August 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).
The following news items may be of interest:
- PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval. Click here.
- However, in UK, there is a threat that PRRT won’t be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA). Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK’s drug approver NICE’s negative recommendation. Read more here.
- GA-68 PET (NETSPOT) is still rolling out across the USA, see CCFs latest list by clicking here.
- Ipsen launches the Brazilian version of ‘Living with NETs’ website. Click here. (See the English language version – click here).
What’s happening on my Blog Site?
A quiet month. Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs.
- The Invisible NET Patient Population. My latest published blog and received some great viewing figures (and this continues). Controversial for some but backed up by facts.
- NETs – not as rare as you think. An older post with some tweaks. Again, controversial for some but backed up by facts.
- Carcinoid vs Neuroendocrine – One of my most controversial posts – this is an older post which previously had an element of sitting on the fence. I jumped off the fence following some further research and period of reflection. I was happy with some of the positive comments I subsequently received on this post.
- Steve Jobs. An updated version with some new research timelines added. This post continues to receive hits daily even when I’m not sharing. Most of the hits are from people searching and find my article online, an indication of the interest Steve Jobs still has today. And many of the hits are NEW audiences.
- NETwork with Ronny © – Community Newsletter JULY 2017. My July 2017 newsletter ICYMI.
- Your favourite posts. All posts with viewing figures above 2000.
Misc Blog Stuff
- There’s a lot of chatter about use of the word ‘fight’ in cancer parlance but many people are misrepresenting the word’s multiple meanings as per the most eminent English language dictionaries. As for me, I’m ‘sticking to my guns’ on the subject.
- I got some great comments on my monthly Lanreotide ‘butt dart’ post. Feel free to add questions. I may know some of the answers and cannot promise answers from Ipsen due to their regulatory arrangements but I will try! Check out the discussion here …… ‘click here’.
- My notification about the Ipsen HomeZone (or equivalent services within your own country) got an interesting response. Since then many others have taken advantage by contacting Ipsen or their specialist asking about the service. This has also led to feedback about the similar schemes from Novartis for Octreotide. I’m happy that my post has provided publicity to services which help patients. Read my post At Home with Lanreotide by clicking here.
August was a slower month in ‘new’ blogging terms mainly due to personal activities and the consequences of having a large internet footprint! Striking a balance is becoming more difficult. I’m seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients (more on this later). Also, I’ve been suffering with minor right hip pain but now seeing improvements working with a physiotherapist. However, despite a low month for brand new blogs, I still managed to make the second highest monthly views ever……..Thank you all so much for the support.
Please join my 2017 awareness campaign event here (select ‘Going’)
I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer. Please also note that I cannot accept telephone calls on a one to one basis. However …..the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
By the time you read this update, the nominations and endorsements for the 2017 WEGO Health Awards will be closed. If you remember last year, I made it to the final in two categories of Blog and Community, and then won the latter. I should find out if I made the finals by the middle of September. Fingers crossed! Many thanks to those who took the time and trouble to vote for me.
Awareness Activity in August 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.
- Article features. I was featured in a well shared and positive article entitled A revolution in the treatment of Neuroendocrine Tumors. A very positive look at the new treatments coming through. I didn’t agree with some of the content but ‘hey ho’ I cannot control what others write. You can check out the article by clicking here.
- Twitter. 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 and are made aware of NETs in the process). In Aug, I tweeted 130 times on my personal account which lead to almost 90,000 views. I was mentioned 94 times by other tweeters and gained 64 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
- Daily Newsletter from my twitter feed (Nuzzel). 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 – you don’t need to have a twitter account to read, just sign up with an email. Currently 294 subscribers – up 10% on last month. Will you be number 300?
- WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences.
- Macmillan Cancer Support. I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients. I’ll be reporting more on this in the coming weeks. This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation. On August 30th, one of my blogs made their “top picks” generating some NET awareness – check out Living with Cancer – 6 tips for conquering fear
- Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read. Cure Magazine has a readership of 1 million. Click here to read more.
- On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance) Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients. I’m really looking forward to visiting and talking to this group.
Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently
Social Media and Stats
Blog Milestone. In August, I tipped a 360,000 views! Thank you all so much ♥ Keep sharing! On track for 400000 by end of the October.
Facebook Milestone. I would love to achieve 6000 followers by the end of 2017 but this will be a challenge. The 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.
Also check out my sister Facebook sites here (click on ‘Like’).
Neuroendocrine Cancer Awareness and Networking
I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. 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
Community Statistics (the measurement of my efforts on your behalf)
- Facebook – 5143. 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).
- Twitter – 4091 / 3160 Follow me here @RonnyAllan1 / @NETCancerBlog
- Total Blog Views: 360875
- Blog with most views: 12568 – The Human Anatomy of Neuroendocrine Cancer
- Most blog views in one day: 2043 on 15 January 2017. Why the spike? ….. “The Human Anatomy of Neuroendocrine Cancer”
- Most blog views in one week: 7538 in July 2017.
- Most blog views in one month: 24142 in July 2017. Why the spike? … these blogs here:
WOW! – that’s an amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in August. Onwards and upwards!
Thanks for reading
Hey, I’m also active on Facebook. Like my page for even more news.
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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!
6 thoughts on “NETwork with Ronny © – Community Newsletter AUGUST 2017”
Really excellent resource Ronny, thank you.
Thank you Kate
At The Christie today Ronny, and gave your blog link to the team there.
thanks …. I used to have some interest from Lyn McCullam (spelling ……) but I understand she’s gone now.
Yes. How do I PM you the correct email address for your new contact?