Home » Awareness » RonnyAllan.NET – Community Newsletter January 2018

RonnyAllan.NET – Community Newsletter January 2018

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A great start to the year in both NETs in the news and my social media activity.  Of course the headline is the US FDA approval of Lutathera (Lu-177) – i.e. PRRT

I caught this news in my social media NET

  1. FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I’m very pleased for my USA friends but we mustn’t forget it’s also required in so many other places.  Help me populate locations in my live article on  PRRT click here.
  2. NET Epidemiology continues to be discussed and (yet) another well known NET expert confirms my 2 year old article saying that the  disease can no longer be considered rare. I suspect more dominoes will follow. Click here for the evidence.
  3. MIDATECH Pharma announced intention to carry out human trials of Q-Octreotide – check out my article covering this potential new drug.  Click here

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Jan 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.

  I now take food with my medicine!  A light-hearted discussion about taking pills/capsules as a NET patient
  Shame on you! An invisible illness article based on a true story.  Some people can be cruel.
  PERT (Creon etc).  Who needs it and why.
PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT)  The future of PRRT type treatment?
  My December 2017 Newsletter in case you missed it.

January 2018 was a record breaking month since blog inception.  Here are the top 10 most read articles which contributed to Jan’s figures:

Shame on you! More stats 2,064
Neuroendocrine Cancer – no treats, just tricks More stats 1,488
Lutetium Lu 177 dotatate (Lutathera®) – PRRT More stats 1,226
PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT) More stats 1,101
Living with Neuroendocrine Cancer – Home Page More stats 1,053
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) –
the Digested Version (Nutrition Series Article 5)
More stats 899
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 855
“You must be doing OK, you’ve not had chemotherapy” More stats 819
Background to my Diagnosis and Treatment More stats 594
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 36

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).
  • 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 will be about PERT (Creon etc) – date to be confirmed by probably around end of Feb).  Join by clicking here (please answer the 3 simple questions)

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.  For example. my story is 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’.

  • 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. In Jan, I tweeted 187 times on my personal account which led to over 145,000 views.  I was mentioned 101 times by other tweeters, 3003 people looked at my profile and I gained 67 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 and I’ve had a growth spurt in January. 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.  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

Speaking Engagements

I’ve been invited to speak to a local (ish) NET patient support group, just tying up the details (watch this space).

Social Media and Stats

Blog Milestone.  At the end of January, I accelerated past 470,000 blog views! Thank you all so much Keep sharing!  On track for half a million by end of February.

Facebook Milestone.  I have my eyes set on 6000 followers by the end of March, 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

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 January.  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 Comments

  1. tlkubiak says:

    Yes. I found his site and love it! It gives me hope

    Sent from my iPhone

    >

    Liked by 1 person

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