NETwork with Ronny © – Newsletter November 2016

Hi,

welcome to my first newsletter, a pilot for a monthly summary of NET news, views and ICYMI (in case you missed it!).

What a month November has been – we had NET Cancer Day build up and I’ve been working hard to put on a good show for the 2016 WEGO Health Activist Awards (results expected around 6/7 Dec) whilst at the same time maintain my other campaigning activity across a wide range of social media platforms.  Due to increased activity, I recorded the second highest monthly viewing figures ever – over 13,000 hits on my blog site in one month (and even more on Facebook).  Not bad for a little backstreet disease – but my intention is to take it to the high street (main street).  Stick with me because I really need your help and support and anyone else you know who can assist.

Blogging

I seem to have produced an above average amount of blogs this 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:

• Looking for good news about treatment?  Read “Exciting Times Ahead”
• Scans are key to finding tumours!  Read “If you can see them, you can detect them!”
• In England, approximately 12 people per day will be diagnosed with NET Cancer – read “One every two hours”
• Don’t feel guilty because you’re not getting chemo.  Read “You must be doing OK, you’ve not had chemo”
• New meaning to the word ‘Palliative’.  Read “it might just save your life”
• Confused by what is chemo and what isn’t?  Read “Chemo or not Chemo”
• NETs – confused about benign and malignant? Read “NETs – Benign vs Malignant”
• Living with NETs – do you think your medical team ‘get it’ ?  Read this brilliant blog here:  “Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it”
• Does syndrome come first or must you have tumours?  Confused?  Read “NETs – chicken or egg?”

Other News in Nov

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 Nov to report:

• Cancer Knowledge Network.  An article published in what is said to be North America’s most widely read cancer education resource.  Read it by clicking here.

• Mentioned by Macmillan Cancer, one of the world’s biggest Cancer support organisations.  See here.  You could increase the impact of this opening by clicking on the black star here to increase my likes number.
• And ….. there has been masses of exposure during the build up to the 2016 WEGO Health Activist Awards where I made the final in two categories:  Blog and Community.

Lutathera (PRRT) Delay. Not the best news from USA where it was announced the approval of Lutathera (PRRT) would be delayed beyond the projected date of 28 Dec 16. A delay of several months seems to be forming on the airwaves but the expanded access program (EAP) will be extended until this issue has been resolved.  CCF has great info on EAP – click here

Living with NETs Website. A new website sponsored by Ipsen (Lanreotide manufacturers) was launched on NET Cancer Day.  This is a special site for me as I was involved with other patients in advising and featuring on the site.  Take a look by clicking here.  Check out my patient video here.

More treatment options for Lung NETs?  Lung NETs lack many of the treatments available for other types of NET but a new trial of Lanreotide could help.  Read here.

Figures

• Facebook – 3639.  This is a key outlet for my blog – please encourage others to like my page.  Please also join my 2017 awareness campaign event here (select ‘Going’)
• Twitter – 3381 / 2672 Follow me here @RonnyAllan1 / @NETCancerBlog
• Total Blog Views:  195,574
• Blog with most views: 6,534  NET Syndromes – Early signs of a late diagnosis
• Most blog views in one day:  1,175 on 2 Feb 2016.  Why the spike? …..  “NETs – Incurable vs Terminal”
• Most blog views in one month: 14,222 in Aug 2016.  Why the spike? …. “I Can”

For interest the 10 Ten Facebook followers by Country.

Thanks for your great support in November.  Looking forward to serving you in December!

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

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