Welcome to my third ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).
January was a month for breaking records. I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they’re broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer. Thank you all so much ♥
January was also a month for making new friends after being invited to speak to an audience of 30 pharma managers at Ipsen’s Germany HQ near Karlsruhe. I was made very welcome by the Ipsen staff and I think it’s great they want to hear the patient voice. Bad weather was coming in fast and I only just escaped in time from Frankfurt Airport, suffering a 2 hour delay while the plane was ‘de-iced’. Nonetheless, I really enjoyed a flying visit to a country where I had lived for 12 years in the 70s/80s. See my Facebook post about this visit: https://goo.gl/hyJ0Si
New Blogs Published
A busy month for new blogs. 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:
- My Dec Newsletter!
- Does your body now have an extra organ? The MESENTERY – I renamed the title after a few days, other scientists are disputing whether it is an extra organ – still interesting for NET patients.
- Neuroendocrine Cancer: Nodes, Nodules and NET Nonsense – Lymph nodes, nodules, lesions and ‘NET nonsense’. Living with Neuroendocrine Cancer!
- Progress report on NETSPOT® and PRRT (Lutathera®) – The most up-to-date information straight from the horse’s mouth.
- In the news: Neuroendocrine Tumour Drug in Trial – Cabozantinib – news of a trial of a novel biological therapy led by Dr Chan and Dr Kulke from Dana Farber
- Road ahead closed – Bowel Obstructions – the worry of a bowel obstruction and a nice card to carry!
- Endoscopy Entertainment – the joys (but necessity) of having a tube stuck down your throat!
Other News in Jan 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. Two new openings in Dec to report:
- Ipsen isn’t really a new audience but the individual employees at their German HQ are now more aware of life with Neuroendocrine Cancer. See my Facebook post about this visit: https://goo.gl/hyJ0Si
- 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. You can sign up for this newsletter here as I won’t be posting it every day. Click this link and sign up if you think this is something you’d be interested in receiving.
- I’m making new friends in the interventional radiologist community having been invited to join their twitter chat. Many of us will know an Interventional Radiologist (some are known as Interventional Oncologists) following treatment (e.g. a liver embolization). I’m hoping to soon have access to some great videos about their work with NETs.
- I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum. I’ll be reporting on this in the coming weeks.
Patients Included. A new campaign for 2017 and I’ll shortly be bringing you news of an opportunity in Mar 2017. We want to be included right?
Blog Milestone. My blog tipped over 220,000 views in Jan and I’m half way from the 1 Jan position to reaching a quarter of a million. Thanks – 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.
- Facebook – 3985. 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 – 3636 / 2807 Follow me here @RonnyAllan1 / @NETCancerBlog
- Total Blog Views: 224,703
- Blog with most views: 7,572 – 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 January Blog views come from – Top 10 countries:
For interest the 10 Ten Facebook followers by City:
Thanks for your great support in January – a great start to 2017.
Hey Guys, I’m also active on Facebook. Like my page for even more news.
My Diagnosis and Treatment History
6 thoughts on “NETwork with Ronny © – Newsletter January 2017”
Hello Ronny omg what an incredible help this all is my husband has been having Lanriotide injections for 3 years and is now going to have radio lunate therapy, I have been beside myself with worry and anxiety as I am very dependant on him because I have had polio, we handle things pretty well together.. I feel so much better after reading all you have done and are doing it helps so much, what an ambassador and encouraging warrior you are…
thanks for the comments, it’s so much easier to talk on my Facebook page here: https://www.facebook.com/NETCancerBlog/
I’m fairly certain I can point you in the right direction
p.s. you commented on my Jan 2017 newsletter, make sure you read the Feb, Mar, Apr, May and June ones – so much more information to find!
Great work as usual Ronny. Just a question I wondered if any of your readers could answer. Does anyone experience extreme fatigue prior to somostatin injection just asking
I’ve seen this many times. For some it’s at the end of the cycle, for others it’s at the beginning. It’s a listed side effect and you should get your blood sugar checked – see the listed side effects inside my blog https://www.google.co.uk/amp/s/ronnyallan.com/2015/12/09/lanreotide-its-calling-the-shots/amp/
Great job, Ronnie. Keep up the excellent work. We all benefit from your very well informed information!