NETwork with Ronny © – Community Newsletter OCTOBER 2017

Hi NETworkers!

Welcome to Ronny Allan’s Community newsletter for October 2017.  A very strong end of the month due to massive support for my Halloween themed but very serious and hard-hitting post “Neuroendocrine Tumors – no treats, just tricks”. If you’ve not seen it or commented on it, check it out here on the Facebook site.  I suspect the number of shares will never be beaten (652 in 36 hours).  31 Oct 2017 is now the biggest number of views on any one day, breaking the previous record set in Jan 2017.  It also made October 2017 the highest monthly views ever.  I am so grateful to those who made that happen ♥

What’s in the NET News

The following news items may be of interest:

  The huge (but expected) news that Novartis Novartis (manufacturers of Octreotide) is purchasing Advanced Accelerator Applications (AAA) (manufacturers of Lutathera Lu-177 (as used in PRRT)). This is a significant acquisition and should benefit the NET community given the size of Novartis and the potential of PRRT worldwide. It will be interesting to see if this has an impact on the UK approval

Read more here.

  I wasn’t at NANETS but did check most of the output consolidated into this post – Read more here
  GA-68 PET (NETSPOT) continues to roll out across the USA, see CCFs latest list by clicking here.
Made it to 3 finals in the WEGO Health awards, I posted about this  here.

Blog Site?  

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. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

 Neuroendocrine Cancer – Trick or Treat.  This ‘themed’ post generated a huge amount of sharing, breaking all previous records.  See more in the newsletter.
  A summary of NET stuff from NANETS 2017
 “You’re Cured” – Topical and controversial in NETs. My opinion.
Weight can be an issue in NETs.  It did actually trigger my diagnosis.
The shock effect never wears off.  My private messages are full of disturbing stories, not just about diagnostic issues but support and care received.  A new campaign.
Genetics and NETs.
My first article for Cure Magazine “It’s not all about me” 

 

Other Activity

October was a busier month in terms of blogging despite several personal challenges and external projects on the go.  Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time.  I still managed to break 2 records in October, mainly due to my Halloween themed post on 31st.  The biggest amount of view in any one day had stood since Jan 2017 and was totally smashed, as was the best month too.   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.  Also, 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.

Awareness Activity in October 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. I’m doing this!

  • 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:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I took part in a WEGO Health patient leader chat on twitter where I was able to contribute to some general cancer questions (subject chronic illnesses).  It was attended by many patient advocates representing many different conditions. The taking part in these activities is time-consuming and mentally hard work but it does allow me to grow as a general patient advocate and to occasionally mention “Neuroendocrine Cancer” spreads awareness to new audiences!  A summary of the conversation can be found here.
  • 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 Oct, I tweeted 218 times on my personal account which lead to almost 89,000 views.  I was mentioned 160 times by other tweeters and gained 49 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 374 subscribers – up 11% on last month.

  • 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!

  • Macmillan Cancer Support.  I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum.  In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities.   This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation.  They have recently agreed to feature NETs on 10 Nov 17 and I’m writing an article in preparation.
that’s me in the centre

Speaking Engagements

  • I was delighted to speak to the South Wales NET patient group (sponsored by NET Patient Foundation).  Here’s some pictures of Chris and I with the group and the local NET Specialist. Dr Mo Khan is setting up a brand new NET Service in Wales – great news for this group.
Left to right: Nikie Jervis (Nurse from NET Patient Forum), Sally Jenkins NET Cardiff, me, Yolande Mears NET Swansea, Chris (my wife)
Dr Mohid Khan – NET Specialist Wales – great supporter of my blog and NET patients Quality of Life
  • On 16 November, subject to contract, I’ve been invited to speak for around an 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig!  Post to follow if allowed by contractual arrangements.

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently.  I’m currently in a pool of patients who may be featured in a UK national, fingers crossed.  Writing an article for Macmillan on NET Cancer Day.

Social Media and Stats

Blog Milestone.  In October, I accelerated past 400,000 views! Thank you all so much Keep sharing!  On track for half a million by Easter 2018.

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 (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 230 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)

Figures

  • Facebook 5337.  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).
  • Twitter4202 / 3252 Follow me here @RonnyAllan1 / @NETCancerBlog

 

Neuroendocrine Cancer – no treats, just tricks
Neuroendocrine Cancer – Tumour Markers and Hormone Levels 
Living with Neuroendocrine Cancer – Home Page
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor
Background to my Diagnosis and Treatment

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 October.  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!

 

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is September 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

NET News

The following news items may be of interest:

 
  • The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.
 
  • The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.
 
  • The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding when used, it reduces the frequency of short-acting somatostatin analogue rescue therapy (….. ergo Octreotide).  Read more here.
 
  • GA-68 PET (NETSPOT) continues to roll out across the USA, see CCFs latest list by clicking here.

 

 
  • The WEGO Health Finalists were announced on 25 Sep and I’m through to the finals in all 3 awards which you nominated me for. Many thanks for the support!  I posted this info here.

Blog Site?  

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. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

 
 
 
  • The Invisible NET Patient Population.  Centred on the issue of a cohort of as yet undiagnosed people with NETs; or have been labelled with another cancer; or have been told their cancer is benign and therefor not recorded.
 
  • The WEGO Health Finalists were announced on 25 Sep and I’m through to the finals in all 3 awards which you nominated me for. Many thanks for the support!  I posted this info here.

 Other Activity

September was a slower month in ‘new’ blogging terms mainly due to personal activities (holiday) and the consequences of being ‘contactable’ by a large internet footprint! Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time.  I’m currently 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) – my strategy is constantly under review.  However, despite a low month for brand new blogs, I still managed to break through 20,000 views for the 4th month in a row…….. 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.  Also, 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.

Awareness Activity in September 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 took part in a patient chat on twitter where I was able to contribute to some general cancer questions.  It was attended by many patient advocates representing many different conditions. The taking part in these activities is time-consuming and hard work but it does allow me to grow as a general patient advocate and to occasionally mention “Neuroendocrine Cancer” spreads awareness to new audiences.  A summary of the conversation can be found here.
    • 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 Sept, I tweeted 109 times on my personal account which lead to almost 75,000 views.  I was mentioned 78 times by other tweeters and gained 68 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 336 subscribers – up 12% on last month.

  • 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!

  • Macmillan Cancer Support.  I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum.  In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities.  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 They have recently agreed to feature NETs on 10 Nov 17.
that’s me in the centre
  • 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.

Speaking Engagements

  • 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 their NET Specialist Dr Mo Khan who is 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.  I’m currently in a pool of patients who may be featured in a UK national, fingers crossed.

Social Media and Stats

Blog Milestone.  In September, I’m very close to 380,000 views! Thank you all so much Keep sharing! On track for 400,000 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’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site:

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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)

Figures

  • Facebook 5220.  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).
  • Twitter4153 / 3195 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 379,320
  • Blog with most views: 12761 – 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:
Home page / Archives More stats 2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor More stats 1,253
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 985
I’m still here More stats 869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption More stats 846
Living with Neuroendocrine Cancer – Home Page More stats 824
Ignore this post about Neuroendocrine Cancer More stats 763
The Human Anatomy of Neuroendocrine Cancer More stats 759

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 September.  Onwards and upwards!

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

community_titled_transparent_2013-10-22

NETwork with Ronny © – Community Newsletter AUGUST 2017

background scene from my Instagram account – to see more check out the newsletter. Photo credit to Nick Lucas

Hi NETworkers!

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!).

NET News

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.

Other Activity

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.

Speaking Engagements

  • 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

Remember …….

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’).

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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)

Figures

  • 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).
  • Twitter4091 / 3160 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 360875
  • Blog with most views: 12568The 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:
Home page / Archives More stats 2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor More stats 1,253
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 985
I’m still here More stats 869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption More stats 846
Living with Neuroendocrine Cancer – Home Page More stats 824
Ignore this post about Neuroendocrine Cancer More stats 763
The Human Anatomy of Neuroendocrine Cancer More stats 759

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

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

community_titled_transparent_2013-10-22

NETwork with Ronny © – Community Newsletter JULY 2017

 

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is July 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).  July 26th was the ‘Cancerversary‘ of my diagnosis – I’m still here after 7 years and I’m apparently a veritable newbie!  There’s some great comments on my ‘I’m Still Here’ post – check them out … ‘click here’

NET News

The following news items may be of interest:

  • Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here.
  • PRRT takes a step forward to being approved in USA.  Click here.
  • Ipsen launches the German version of ‘Living with NETs’ website.  Click here.

What’s happening on my Blog Site?  

As per above, 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.

There’s a lot of chatter about use of the word ‘fight’ in cancer parlance but most 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’

NET Cancer Blog Activity

July was a slower month in ‘new’ blogging terms mainly due to holiday.  I’m seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients.  Also, I’m still suffering with minor pain which has decided to move to my right hip (hopefully localising where the real problem is).  Physiotherapist appointment is next week.  However, despite a low month for brand new blogs, I managed to totally smash my monthly blog view record (after smashing it last month too!)  ……..Thank you all so much for the support.

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.  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.

I’ve been nominated for the 2017 WEGO Health Awards in three categories so far, Blog, Patient Leader Hero and Lifetime Achievement.  If you remember last year, I made it to the final in two categories of Blog and Community and won the latter.  A vote for me is a vote for Neuroendocrine Cancer awareness. VOTE HERE PLEASE

Click on ‘Endorse Ronny Allan’.  It defaults to ‘Blog’ but the other two are there via the drop down menu.  Thanks, I cannot get to the finals without the votes.

Awareness Activity in July 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.

  • 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). 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.  Currently 269 subscribers – up 12% on last month.
  • I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  Other irons are in the fire but unable to bring you firm news just yet.
  • I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK.
  • 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.  Click here to read more.

Speaking Engagements

  • On 12 July, I delivered a ‘patient view’ presentation to Ipsen (UK) which was well received.
  • 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.
Me with some very nice Ipsen people! 12 July 2017 in London

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently

Remember …….

Social Media and Stats

Blog Milestone.  In July, I tipped a THIRD OF A MILLION views! Thank you all so much Keep sharing! On track for 400000 by end of the year.

Facebook Milestone.  I met my target of 5000 followers a few months before my self inposed deadline date.  I’m very grateful!  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.

Instagram

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

Medicine

Figures

  • Facebook 5007.  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’)
  • Twitter4000 / 3095 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 337313
  • Blog with most views: 12323The 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: 20498 in July 2017.  Why the spike? … these blogs here:
Home page / Archives More stats 2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor More stats 1,253
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 985
I’m still here More stats 869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption More stats 846
Living with Neuroendocrine Cancer – Home Page More stats 824
Ignore this post about Neuroendocrine Cancer More stats 763
The Human Anatomy of Neuroendocrine Cancer More stats 759

 

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 the sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in July.  Onwards and upwards!

Thanks for reading

Ronny

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!

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