RonnyAllan.NET – Community Newsletter March 2018


Headline for the period of March 2018 is reaching a milestone of half a million blog views.  Yay …… Read more here. Amazing that I clicked over the 500,000 mark in a taxi going from Barcelona airport to my hotel for ENETS 2018 where I’d been sponsored by INCA.  Fortunately I had prepared the post earlier and was able to spread the news in a few clicks.  I picked up some great information at this conference which I’m feeding into my articles so you get the best and latest thinking.  Here’s a couple of pictures of me with famous NET specialists. 

Dr James Yao
Dr Jonathan Strosberg

I caught this news in my social media NET

  1. A website I helped design with a couple of other patients has won an award.  The site, owned by Ipsen (of Lanreotide fame), on the 2018 Eye for Pharma most valuable patient initiative.  Read more here.
  2. For patients in UK (England in particular), the long wait for routine access to PRRT could hopefully be coming to an end, despite it being approved in Europe (EU countries) since last year.  Dates are now in the diary for discussion and subsequent ‘announce by’ dates. Fingers crossed for some news in April or May.  Read more by clicking here.
  3. ITM announced that 11 trial sites are now open for recruitment to an expansion of PRRT using 177Lu-Edotreotide (Solucin®) – COMPETE Trial.  – Read about it by clicking hereI met the trials team in Barcelona on 8 Mar, they are struggling to get sufficient numbers which is a great shame.
  4. A survey by NET Patient Foundation and Royal Free Hospital London suggests there certain side effects of Lanreotide are more prevalent than the trial data.  Read more here.

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Mar 2018 may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here  March 2018 was a record-breaking month with the biggest number of views in one month ever.  ​

   Irrfan Khan, star of Slumdog Millionaire and Life of Pi, is diagnosed with Neuroendocrine Cancer – read more here
My blog breaks through half a million views – read more here
 PERT article updated to include output from Tara Whyand online chat – read more here
   A patient website I helped design has won a major pharma award. Read more here
  RonnyAllan.NET – Community Newsletter February 2018 – in case you missed it.
  Major restructure and update to Carcinoid vs Neuroendocrine

 

Despite a lack of posts due to external activities and illness, March 2018 is now a record-breaking month with just under 30,000 views.  Here are the top 10 most read articles which contributed to March’s figures:

Shame on you! More stats 1,935
Living with Neuroendocrine Cancer – Home Page More stats 1,334
Can NETs be cured? More stats 881
Background to my Diagnosis and Treatment More stats 861
Namaste Irrfan Khan More stats 849
Lanreotide vs Octreotide More stats 795
Neuroendocrine Cancer – Incurable vs. Terminal More stats 762
“You must be doing OK, you’ve not had chemotherapy” More stats 645
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 628
Neuroendocrine Tumours – benign vs malignant More stats 601
Neuroendocrine Cancer – no treats, just tricks More stats 587
Serotonin – the NET effect More stats 581
RonnyAllan.NET – Community Newsletter February 2018 More stats 542
Neuroendocrine Cancer – not average, just mean More stats 536

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients.  Thank you all so much for the support in helping me do this.

  • Please join my 2018 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 due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff.  I have so many other sites you can contact me on – all inside the newsletter.
  • 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.
  • As the number of people contacting me has increased so much, I’ve set up a chat room here (I’m not the only one who can answer questions!).  This is not a forum, it’s a place to make people feel safe and to discuss.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues.  The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc)  Join the chat group by clicking here (please answer the simple questions so I can process quicker). As at 1 Apr 2018, there were 608 people in the group.

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 doing this although it may not always be apparent.

  • Facebook has been in the news regarding the security of user’s data.  I am pretty well up to date with security although determined hackers are always a risk.  I take this threat seriously and my personal account is as protected as it can be.  Any signs of suspicious activity on my blog, Facebook pages and group, or indeed any of my social media sites, is dealt with robustly in order to protect you and me.  I managed to get a quote in the WEGO Health article about the issue.  Check it out here.
  • For example. my story was once again featured on World Cancer Day – click here.  Please join my World Cancer Day calendar event to be reminded each year – click here and select ‘Going’.
  • In Feb, my blog site was recommended to health professionals by Dr Jane Maher who is the Chief Medical Officer for Macmillan Cancer Support, one of the biggest Cancer Support organisations in the world.  This was out of the blue but gratefully accepted!  
  • Article features.
    • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. 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).  There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 134 times on my personal account which led to over 111,000 views.  I was mentioned 113 times by other tweeters, 3154 people looked at my profile and I gained 35 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. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. 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.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!

WEGO Awards

Engagements and Invites

  • Attended a meeting coordinated by NET Patient Foundation about a patient app.  Apparently I’m on the project team and happy to help if I can.  I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • I have been invited to join a medical conference in Berlin as a patient advocate.  This is not a NET conference so is very exciting.  I’ve been asked to contribute to doctor-patient communications and the fear factor of living with cancer (in addition to a patient story of course).
  • I’m getting ready to present a patient experience story in May to a newly established NET Dietitians group in UK – coordinated by the wonderful Tara Whyand.  Very excited about this, a wonderful initiative to tackle an unmet need for patients.

Social Media and Stats

Blog Milestone.  At the end of March, I accelerated past 525,000 blog views! Thank you all so much Keep sharing!  On track for one million by the end of 2019.

Facebook Milestone.  I have my eyes set on 6000 followers by the end of April, could be sooner with your direct involvement!  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. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 250 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!  I really enjoy these pictures, I hope you do too. You can follow me here:  Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

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 March.  Onwards and upwards!

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

2 thoughts on “RonnyAllan.NET – Community Newsletter March 2018

Thanks for the comment, make sure you have ticked the box to receive notifications of responses

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.