RonnyAllan.NET – Community Newsletter JUNE 2018

Summary for June

For the first time in 3 years, I didn’t write any new articles in a single month (other than the monthly newsletter).  This was due to a prolonged chest infection from which I’m still recovering.  I’m so much better now (thankfully) but I suspect recovery has been slightly hampered by the recent UK heatwave. I managed a relaxing short break on the south coast of England to make up for my cancelled 3 week road trip to Scotland  My weight remains below 10 stone, the lightest I have been for over 30 years. For me, weight loss is a red flag, although this occurrence wasn’t sufficient for me to start waving one.  I will get the results of my Ga68 PET scan on 11 July (please note this is unconnected to my bad chest infection).   Many thanks to all the messages received both public and privately, I’m most grateful for the tonic.

Better News

  1. External Recognition.  I have been nominated for 5 awards, one or two with multiple nominators.  Thanks so much to the named and anonymous nominators – read more here (the 5th nomination is being processed by WEGO so might not be showing yet).  If you would like to nominate me for further awards (twitter, etc), see here how to do this. I’m also absolutely thrilled to be in the Top 5 patient leader blogs to watch in 2018 as listed by WEGO Health. I told you I would take Neuroendocrine Cancer awareness to new audiences and I remain focused on that mission. According to WEGO Health, my blog is armed with facts, personal experience, and compassion. I never have time to assess what I’m doing so it’s useful feedback.
  2. Blog Statistics. Despite a lack of new posts in June, I still managed to accumulate over 25,000 views on my blog site.  In summary, my blog views have accelerated in the past 3 months. Many thanks   This is recognition of organic growth caused by new activities, new contacts, wider use of social media outlets and an increased demand for the type of material I produce. 

Blog Site Activity in June

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

 PET-CT-Scanner

Gallium PET Scans – Into the Unknown

My latest article ready for my appointment on 11 July 2018

  RonnyAllan.NET – Community Newsletter May 2018 – in case you missed it.
 prrt update PRRT Update – patients please read and advise on new locations.  Contains the patient provided update on new locations for insurance funded PRRT in USA.
Carcinoid Vs Neuroendocrine.  An important topic and failure to update is preventing us from improving awareness and understanding of NETs
Neuroendocrine Cancer – tumour markers and hormone levels – did I miss any?
   Endoscopy for NETs – taking the camera to the tumour –  minor update
Namaste Irrfan Khan –  Irrfan Khan – well known Indian Actor (Slumdog Millionaire, Life of Pi, Jurassic Park, etc) announced he has a High Grade NET.

Due to illness for most of the month, Jun 2018 views are down on last month but still managed over 25,000 views.  Here are the top 10 most read articles which contributed to Jun’s figures:

Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 1,106
Living with Neuroendocrine Cancer – Home Page More stats 941
Gallium 68 PET Scans – Into the Unknown More stats 834
Neuroendocrine Cancer – normally slow but always sneaky More stats 816
Neuroendocrine Cancer – Incurable vs. Terminal More stats 786
RonnyAllan.NET – Community Newsletter May 2018 More stats 716
Namaste Irrfan Khan More stats 714
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 690
Neuroendocrine Cancer – tumour markers and hormone levels More stats 679
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 668

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, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!).  This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly.  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 2 July 2018, there were almost 1237 people in the group. I might cap at 2000. 

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of.  I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details.
  • In July, I will continue a dialogue in a patient app development coordinated by NET Patient Foundation.  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’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here

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 124 times on my personal account which led to over 88,000 views.  I was mentioned 80 times by other tweeters, 1689 people looked at my profile and I gained 39 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!  They recently listed me as one of the top 5 bloggers to watch in 2018.  This is great awareness and good feedback for my own efforts.  Read more here.  Also note the 2018 awards are now open.  If you would like to nominate me for an award, ask me how.

Social Media and Stats

Blog Milestone.  At the end of June, I accelerated past 618,000 blog views! Thank you all so much Keep sharing!  On track for one million in the latter half of 2019.

Facebook Milestone.  Surpassed 6300 followers by the end of June but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so 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 JUNE.  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!

RonnyAllan.NET – Community Newsletter May 2018

 

Newsletter May 18

Summary for May

Different type of intro to my newsletter as it’s late due to unexpected illness.  In some ways, what happened in May is possibly connected.  I had quite a bit of work to do for a ‘Patients Included’ event in May in Berlin.  I managed to meet the deadlines and admit I was slightly out of my comfort zone. That said, it was a success and I managed an amazing amount of new contacts and awareness for Neuroendocrine Cancer.  I arrived back exhausted and turned my attention to another two things – a patient presentation to the inaugural UK Dietitian Group study day followed by a holiday to Wales. The study day was done on the way to my holiday, was very successful and I enjoyed it.  My holiday was also very enjoyable despite the travelling to and from the area.  The weather in UK has been mostly hot and muggy!

However, the day following my return from holiday, I sensed my chest tightening and this led to general fatigue, malaise, wheezing. coughing and (unusual for me) nausea and a single bout of sickness. Getting out of bed on Friday 1st June proved difficult (thus why this newsletter was not complete and not sent out).  One thing led to another and on Monday 4th June, I finally sought medical help (first lesson, that took too long to instigate).  Don’t let your poker face take over.  Armed with antibiotics and steroids, I set about repairing myself.  For good measure I also got a chest x-ray and some blood tests (tbc).  Just as well I was still strong enough to go to London for my very first Ga68 PET scan on Tuesday although my wife had to come with me given my fragile state.  I accept I took a risk here.  I’m still recovering as this newsletter goes out.

Better News

  1. External Recognition. I’m absolutely thrilled to be in the Top 5 patient leader blogs to watch in 2018 as listed by WEGO Health. I told you I would take Neuroendocrine Cancer awareness to new audiences and I remain focused on that mission. According to WEGO Health, my blog is armed with facts, personal experience, and compassion. I never have time to assess what I’m doing so it’s useful feedback. And thanks also to NET Patient ‘Michael’ for his comment on last year’s nomination which has been used here.  Read more here.
  2. Blog Statistics. Despite a lack of new posts due to the above mentioned external activities, May 2018 was still a record-breaking month (after April’s new high) with more than 30,000 views for the third time in three months. In summary, my blog views have accelerated in the past 3 months. Many thanks   This is recognition of organic growth caused by new activities, new contacts, wider use of social media outlets and an increased demand for the type of material I produce. 
  3. WEGO Health Awards.  I received my first nomination for the 2018 awards – a return to ‘Best in Show: Community’, an award I won in 2016 – very exciting.  If you would like to nominate me for further awards (blog, Facebook, twitter, etc), see here how to do this.

Blog Site Activity in May

Due to the vagaries of Facebook inner workings, some of these articles created or updated in May 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. May 2018 was a record-breaking month with the biggest number of views in one month ever.  ​

 PET-CT-Scanner

Gallium PET Scans – Into the Unknown

My latest article following an appointment schedule for 5 June 2018

 Newsletter Apr 18 RonnyAllan.NET – Community Newsletter April 2018 – in case you missed it.
 prrt update PRRT UpdateUS patients please read and advise on new locations
 Yao not rare NETs no longer raredon’t believe the hype – believe the math
 Young-woman-with-computer-worried Patient Forums – Frighteningly good or good at frightening? An honest appreciation of the issues.  Some won’t like my text, if not, just move on to the next story. 
 enterade-bottle-2016  enterade trial for treating diarrhea in NET Patients – updated to include new data.

Despite a lack of posts due to external activities, …. May 2018 is now a record-breaking month (after April and May’s new highs) with more than 35,000 views (another 30k plus figure for the third time in three months).  Here are the top 10 most read articles which contributed to May’s figures:

Neuroendocrine Cancer – normally slow but always sneaky More stats 1,672
Lutetium Lu 177 dotatate (Lutathera®) – PRRT More stats 1,179
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,136
Living with Neuroendocrine Cancer – Home Page More stats 1,114
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 1,024
Gallium PET Scans – Into the Unknown More stats 960
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 823
Don’t believe the hype – Neuroendocrine Cancer Myths debunked More stats 814
Background to my Diagnosis and Treatment More stats 727
Neuroendocrine Tumours – benign vs malignant More stats 696

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, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!).  This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly.  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 31 May 2018, there were almost 1100 people in the group.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of.  I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I attended a medical conference in Berlin as a patient advocate and speaker.  This was not a NET conference so is very exciting for me both as a patient activist and speaker.  I contributed to 3 separate activities:
    • Patient Doctor Communications – read more here
    • The Changing Face of Palliative Care – read more here.
    • My uninvited guest: perspective on chronic disease in young and old – read more here
    • I made a lot of new friends who are all now aware of our type of cancer. I’m hoping for further involvement in future events.
  • I presented a patient experience story in May to a newly established NET Dietitians group in UK – coordinated by the wonderful Tara Whyand.  A wonderful initiative to tackle an unmet need for patients in UK.  There’s a lot more to come from this initiative.
  • In May, I continued a dialogue in a patient app development coordinated by NET Patient Foundation.  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’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here

Article features

  • NET Research Foundation featured an article I wrote about the importance of clinical research, in particular how patients find out about clinical trials that might be of interest to them.  Read more here:
  • 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.  Please be careful sharing personal data including in Facebook closed groups.
  • 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 73 times on my personal account which led to over 62,000 views.  I was mentioned 91 times by other tweeters, 2046 people looked at my profile and I gained 60 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!  They recently listed me as one of the top 5 bloggers to watch in 2018.  This is great awareness and good feedback for my own efforts.  Read more here.  Also note the 2018 awards are now open.  If you would like to nominate me for an award, ask me how.

Social Media and Stats

Blog Milestone.  At the end of May, I accelerated past 590,000 blog views! Thank you all so much Keep sharing!  On track for one million by the end of 2019.

Facebook Milestone.  Surpassed 6200 followers by the end of May but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so 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 May.  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!

RonnyAllan.NET – Community Newsletter April 2018

Headlines

1.  Patients Included.  I’m a big believer that patients should be included in all aspects of healthcare and I can very much relate to any initiative that promotes this. I’m therefore pleased to have been listed as a Patients Included accredited site providing further  EXTERNAL awareness opportunities – read about this here

2. I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc, the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – It also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.

3. My blog site is 4 years old.  When I set my blog up on 29 Apr 2014, I never imagined for one second it would be anything other than an obscure and niche site getting a couple of hits per day. I’m therefore really grateful to those who are still supporting me including my most recent followers. It’s your support that inspires me to write the posts and then offer them up as awareness messages or simply words to help patients. Happy 4th birthday to my blog site!

4.  My Facebook site (NET Cancer Blog) tipped over 6000 likes – I’m sensing a slight slow down in Facebook growth against a backdrop of a 20% increase in blog hits – go figure!  Thanks for your support on this page – if you know someone who might like this page, feel free to invite them or share this post. Many thanks

I caught this news in my social media NET

  1. 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.  The NICE meeting was held in April but to date there has been no release of information about what was discussed and what will happen next. There might be ‘commercial’ niceties and attendee confidentially involved and the NICE website simply states that a meeting was held – nothing more.  Read more by clicking here.
  2. The UK is launching a NET dietitian support initiative (DING – Dietitians Interested in NETs Group) and their first meeting will be held next month. The initiative is led by Tara Whyand and supported by the NET Patient Foundation. Access to “NET aware” dietitians is an unmet need in many places and I’m delighted to be attending to provide a patient story to support this excellent initiative. I have mentioned this unmet need many times in many posts and I’d like to thank Tara for moving the issue forward.  Read more here.
  3. Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body.  Read more here.

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or updated in Apr 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  April 2018 was a record-breaking month with the biggest number of views in one month ever.  ​

   Sapanisertib – a drug in trials for pancreatic NETs – read more here
   Major restructure and add-on – Neuroendocrine Cancer – Hormones – read more here
  Update – Somatostatin Receptors – read more here
   Update – The Surveillance Merry-go-round – Read more here
  RonnyAllan.NET – Community Newsletter March 2018 – in case you missed it.
  Update to Carcinoid vs Neuroendocrine

Despite a lack of posts due to external activities,  BUT ….April 2018 is now a record-breaking month with more than 30,000 views for the first time.  Here are the top 10 most read articles which contributed to April’s figures:

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,693
Living with Neuroendocrine Cancer – Home Page More stats 1,330
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,007
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 973
Neuroendocrine Cancer – no treats, just tricks More stats 933
Background to my Diagnosis and Treatment More stats 851
Neuroendocrine Cancer – Hormones More stats 813
Living with Neuroendocrine Cancer – 7 tips for conquering fear More stats 801
Lanreotide vs Octreotide More stats 764
Neuroendocrine Cancer: Somatostatin Receptors More stats 745

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, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!).  This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly.  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 30 Apr 2018, there were 791 people in the group.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of.  I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • 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 for me as a patient activist and speaker.  I’ve been asked to contribute to 3 separate activities:
    • Patient Doctor Communications – read more here
    • The Changing Face of Palliative Care – read more here.
    • My uninvited guest: perspective on chronic disease in young and old – read more here
  • 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.
  • In April, I 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.
  • 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.  Please be careful sharing personal data including in Facebook closed groups.
  • 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!  Dr Maher continues to cite this site in April for contributing to general cancer awareness and I’m thankful for that.
  • Article features.
    • NET Research Foundation featured an article I wrote about the importance of clinical research, in particular how patients find out about clinical trials that might be of interest to them.  Read more here:
    • 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 113 times on my personal account which led to over 94,000 views.  I was mentioned 91 times by other tweeters, 2208 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!

Social Media and Stats

Blog Milestone.  At the end of April, I accelerated past 555,000 blog views! Thank you all so much Keep sharing!  On track for one million by the end of 2019.

Facebook Milestone.  Surpassed 6000 followers by the end of April but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so 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 April.  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!

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!

RonnyAllan.NET – Community Newsletter February 2018

Another great start to the year in both NETs in the news and my social media activity. It’s been really cold where I am though!

I’m so busy with personal contacts, I decided to set up a chat room so that other people can help me answer some really difficult questions!  This ‘chat rom’ is not designed to run like a traditional Facebook forum, it’s a place to make people feel safe and to discuss without the usual distractions and dramas that people often encounter. And …. it’s about learning.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people (I already have a few of the latter). 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 hosted by a world-renowned NET specialist dietitian – subject was 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 or just search for this group in Facebook – “Neuroendocrine Cancer – Ronny Allan’s Group“. I’m not intending it to be a large group so I’ll be capping it around 1000 to take a few months ‘breather’ before deciding what to do. Please answer the simple questions so I can process quicker.

I caught this news in my social media NET

  1. Whether to cut or not to cut (or watch and wait then cut if necessary) and the sequencing of treatments is a really difficult issue for NET specialists.  I quite liked two video clips that came out last week and they cover this issue quite nicely including some interesting abdominal challenges in surgery:
    a.  Risk Stratification and Management of NETs – click here
    b.  Surgical Considerations for NETs – click 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.  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 here.

Blog Site Activity  

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

The Oncolytic Virus AdVince is removed from the freezer ready for the Neuroendocrine Cancer Trial
 Update – Oncolytic Virus Trials for Neuroendocrine Cancer – it’s gone quite on this trial so this is an update.
 Things to do … sometimes it’s OK to do nothing!
Underactive Thyroids – did you know that Somatostatin Analogues can play a part?
   Enterade Trial – interesting development in the battle against diarrhea
  RonnyAllan.NET – Community Newsletter January 2018 – in case you missed it.
  Major restructure and update to Neuroendocrine Hormones

 

February 2018 topped 21,000 views (short month).  Here are the top 10 most read articles which contributed to Feb’s figures:

Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 974
Update – Oncolytic Virus Trials for Neuroendocrine Cancer More stats 755
Neuroendocrine Cancer – Hormones More stats 723
Advanced Oncology Formula enterade® – a breakthrough for NET Patients? More stats 689
Background to my Diagnosis and Treatment More stats 629
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption More stats 578
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 530
RonnyAllan.NET – Community Newsletter January 2018 More stats 476
I now take food with my medicine! More stats 464
Things to do today More stats 441

 

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)

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 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. In the last month, I tweeted 148 times on my personal account which led to over 113,000 views.  I was mentioned 74 times by other tweeters, 2500 people looked at my profile and I gained 32 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.  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 – happy to help.
  • 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 attending ENETS 2018 in Barcelona.  I’ll be bringing you the latest and relevant news on NETs

Social Media and Stats

Blog Milestone.  At the end of February, I accelerated past 495,000 blog views! Thank you all so much Keep sharing!  On track for half a million by March 9th.

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

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

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 February.  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!

RonnyAllan.NET – Community Newsletter January 2018

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!

NETwork with Ronny © – Community Newsletter DECEMBER 2017

6

HAPPY NEW YEAR and welcome to Ronny Allan’s Community newsletter for December 2017. A quieter month due to the holiday season in the latter half.  I was generally quieter in the first half too, maybe that’s a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month.

At the end of 2017, I’ve been reflecting on the amazing support from you guys.  I’m a bit ‘discombobulated’ but also proud to see that I’ve had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure.  It seems almost impossible to carry that momentum on in 2018 but I’ll give it a go!  Check out my top 6 posts of 2017 by clicking here.

AND ….. I’m now officially ronnyallan.NET (how apt is that!)

ALSO …. I’m offering Google translate on each blog page and post to better service my international followers.

language

I caught this news in my social media NET

  1. NET Incidence UK. New figures from Public Health England confirms the incidence of NETs continues to rise supporting my 2 year old article indicating it was not rare, just less common.  The data was published quietly by NET Patient Foundation in their December 2017 newsletter. Check out the new data by clicking here.
  2. PRRT. Anticipation is rising awaiting the US FDA approval and a NICE statement on expansion in England.  In Scotland, I have anecdotal evidence that PRRT is being set up as a routine service in Glasgow Beaston (will update you when I have something concrete).  Read the updated post here.
  3. Pheochromocyoma/Paraganglioma.  Check out news of a new drug in the pipeline – Azedra (not approved yet) – click here.

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Dec 2017 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.

  NETs – A Surveillance Society – make sure you are getting the right checks
  Updated version of Somatostatin Analogues Pipeline (including news of delivery systems – smaller needles, nasal spray, capsules)
  Great video update from Dr Jonathan Strosberg

graphic courtesy of ITM AG
Expanding PRRT update
  My November Newsletter in case you missed it.

Other Activity

December was quiet but I’m out there 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.
  • In December, the total number of people from USA on my main Facebook page exceeded 3000 – check out the announcement here.

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.

  • 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 Dec, I tweeted 140 times on my personal account which led to over 100,000 views.  I was mentioned 90 times by other tweeters, 2526 people looked at my profile and I gained 40 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. 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.  I’ve been pushing this newsletter quite a bit in Dec which has upped my subscriber base to 415 – a 10% increase 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!

WEGO Awards

Speaking Engagements

On 16 November, I spoke for around 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig!  Post to follow when I have the official photos. Still waiting on feedback from the sponsor.

Watch this space as I’m working on quite a few projects concurrently.

Social Media and Stats

Blog Milestone.  In December, I accelerated past 445,000 views! Thank you all so much Keep sharing!  On track for half a million by end of February 2018.

Facebook Milestone.  I would love to have achieved 6000 followers by the end of 2017 but that is now an almost impossible challenge without 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 240 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

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 December.  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 NOVEMBER 2017

Welcome to Ronny Allan’s Community newsletter for November 2017. A very strong beginning 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 (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so phenomenal; it actually eclipsed my entire NET Cancer Day effort on 10 Nov! I am so grateful to those who made that happen ♥

That said, I was actually pretty quiet on NET Cancer Day. You have to remember that my contribution is mostly social media, that is my strong point and that is where I focus. It’s a great platform in the ‘awareness battlespace’ for many medical conditions. Moreover, it is where we will find new audiences. More and more doctors of all specialities are joining social media on a daily basis – we need them to find out about NETs.

I was quiet for much of November due to a wee bit of exhaustion, coupled with a slight depression that another year of ‘same old’ messages was taking place. Despite this, I still managed to dominate the social media #LetsTalkAboutNETs campaign.

AND ….. I’m now officially ronnyallan.NET (how apt is that!)

If English is not your first language, please check out my language gadget on each page and post of my blog site:

language

I caught this news in my social media NET

(did you see what I did there?)

  1. Pheochromocytoma is something I’ve written about before but this video from NET Cancer Day (courtesy of the PheoPara Alliance) is a classic example of how I believe we should do awareness – it’s about real things happening to real people rather than gimmicky BAWSA stuff.  If you have not seen this short video, check it out here.
  2. New Treatments on the horizon – short video from Dr Matthew Kulke with my additional comment – check it our here
  3. RIP Sunny Susan Anderson, patient legend – check out this link

Blog Site Activity  

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.

 Hormones – The NET Effect Horrible Hormones – totally revamped post and now a reference article on my site. https://www.facebook.com/NETCancerBlog/posts/968176113320680
 7 year itch The 7 Year Itch.  Living with NETs! https://ronnyallan.com/2017/11/20/the-7-year-itch/
 the-p-word The P Word has a bit of a renaissance period in Nov with many people showing a renewed interest in the subject of palliative care https://ronnyallan.com/2016/11/18/palliative-care-it-might-just-save-your-life/
 Newsletter Oct 17 October Newsletter  – in case you missed it https://ronnyallan.com/2017/11/01/network-with-ronny-community-newsletter-october-2017/
 poker face Poker Face or Cancer Card – my second article in Cure Magazine https://www.curetoday.com/community/ronny-allan/2017/10/poker-face-or-cancer-card

Other Activity

November didn’t seem like 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 records in November, mainly due follow on support for my Halloween themed post on 31st Oct.  Thank you all so much for the support.

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 I cannot accept telephone or video calls on a one to one basis (please just message me and I will respond).  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 November 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’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 Nov, I tweeted 250 times on my personal account which led to 152,000 views.  I was mentioned 160 times by other tweeters, 3322 people looked at my profile and I gained 48 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.Nov tweets
  • 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 387 subscribers – up 13 on last month.

nuzzel

 

  • 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

 

  • 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 published an article recognising NET Cancer Day (might be the first time they ever did) – check it out here:

Speaking Engagements

On 16 November, I spoke for around 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig!  Post to follow when I have the official photos.

Writing and other types of Engagement (external)

Watch this space as I’m working on quite a few projects concurrently.

Social Media and Stats

Blog Milestone.  In November, I accelerated past 430,000 views! Thank you all so much Keep sharing!  On track for half a million by end of February 2018.

Facebook Milestone.  I would love to achieve 6000 followers by the end of 2017 but that is now an almost impossible challenge without 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.

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

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 November.  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 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.

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 JUNE 2017

 

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is June 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:

  • NETs in the UK National News.  Great publicity.  Featuring NET Patient Foundation.  Click here.
  • Personalised PRRT is highlighted.  Click here.
  • Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here.
  • Videos from LACNETS.  I’ve not watched them all yet due to holiday but they are always great!  Click here.
  • PRRT.  News of a PRRT trial being set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here.
  • Immunotherapy.  Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending.  Check out this link.
  • Awareness.  Giovanni from LACNETS generates awareness in her local area – I have no doubt that awareness saves lives.  Read here.
  • Lanreotide.  Ipsen announces approval in Japan for treating NETs.   Click here.

NET Cancer Blog Activity

June was a slower month in ‘new’ blogging terms mainly due to holiday but even during this holiday, I’m being invited to external projects and a continuing flow of private messages. I’m still suffering with back pain but patiently waiting to see a physiotherapist. However, despite a low month for brand new blogs, I still managed for the first time to break through the monthly blog view figure of 20000.  ……..Thank you all so much, a lot of this was down to your support for some scheduled posts whilst I was on holiday ♥

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.   The nominations period ends on 7th July and I’ll let you know how you can vote for me. A vote for me is a vote for Neuroendocrine Cancer awareness.

BREAKING NEWS (…ish).  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.   You can see my profile here: http://www.curetoday.com/community/contributors

 

New (or significantly updated) Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Awareness Activity in June 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 239 subscribers – up 25% 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 7 July, I’ve been invited to speak for 10 minutes at the PLANETS patient conference in Southampton.  This is special for me as it’s where my major treatments took place and some of my medical team will be there.
  • 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)

On 12 July, I’ve been invited to speak to Ipsen (UK). Still setting up this short notice meeting, details to follow in a separate post.  Additionally, I was interviewed by a health reporter and separately by a health consultant. I’m not at liberty to provide details yet but if anything is published in the public domain, I will of course publish it on my social media channels.

Remember …….

Social Media and Stats

Blog Milestone.  In June, I tipped over 310000 views! Thank you all so much Keep sharing! On track for 400000 by end of the year.

Facebook Milestone.  I’m aiming for 5000 followers by year-end and this is on track. 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

Figures

Where did June 2017 Blog views come from? – Top 10 countries:  Germany on the up (wunderbar). And thanks to USA!

 

For interest. the 10 Ten Facebook followers by Country – Germany still sneaking up (wunderbar wieder).  Interestingly Canada always reads more than Australia despite fewer followers.

 

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 June.  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 MAY 2017

Hi NETworkers!

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

This year, it’s occurred to me that I’ve gone beyond just being known as a ‘blog’ and have transformed into something with a much wider focus within the NET Community and beyond. I’ve added a new section called NET News. This is a catch up of stuff I’ve accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact or influence NETs  This section replaces ‘Highlights’ which will be renamed to ‘NET Cancer Blog Activity’ and cover my efforts to generate awareness and to help others.

NET News

The following news items may be of interest:

  • PRRT.  Advanced Accelerator Applications (AAA) the manufacturers of Lutathera for PRRT have announced they are on track for a mid year resubmission of the data (NDA) to the US FDA for their consideration and hopefully approval.  They also indicated that the EMA authorisation may happen in Q3 (period 1 July – 30 September) – this would be key for UK where the treatment was withdrawn from routine service in 2015.  Read more here.
  • New Trial.  Based on use of an immunotherapy drug ATEZOLIZUMAB (Tecentriq) combo’d with BEVACIZUMAB (more well known as Avastin) which is a type of biological therapy.  Click here.
  • Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here.

NET Cancer Blog Activity

Like April, May was a slower month in ‘new’ blogging terms due to a number of external projects and a continuing flow of private messages. I continue to suffer back pain but my GP is now sending me to a physiotherapist (I sometimes forget I’m a patient too!). However, despite a low month for brand new blogs, I still managed to accumulate the third biggest monthly blog views ever.  ……..Thank you all so much ♥

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.  The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow.

BREAKING NEWS:  I’ve been nominated for the 2017 WEGO Health Awards in two categories so far, Blog and Patient Leader Hero.  If you remember last year, I made it to the final in two categories of Blog and Community and won the latter.   I’ll bring you more details in due course.

Speaking Engagements

On 7 July, I’ve been invited to speak for 10 minutes at the PLANETS patient conference in Southampton.  This is special for me as it’s where my major treatments took place and some of my medical team will be there.

On 13 July, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting.  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 Engagements (external)

I contributed to an article written by the CEO of WEGO Health about the spread of fake health news (miracle cures etc).  You can read the post here –On Facebook fake news can be life or death

I wrote an article for Macmillan Cancer Support which is due to be published on 5 Jun 2017 (will post next week).  This is part of Macmillan Volunteers week and I volunteered to write about my recent experience in becoming a Macmillan Community Champion.

I took part in a Macmillan poster campaign last year and finally got to stand next to a working poster in my home town of Dundee!  Here’s me here next to the poster:

There are one or two others but they are not firm yet – but you’ll be the first to know when I know!

New (or significantly updated) Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Awareness Activity in May 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). 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 192 subscribers – up 20% 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 making new friends in the interventional radiologist community and am waiting on a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do! I’m also seeing an increase from the Pathology community.  The trailer for the documentary which will feature a NET Patient can be found by clicking here.  The actual documentary is now available on Vimeo and Amazon Prime.
  • I’m proud to have been asked to become 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.

Patients Included.  A new campaign for 2017. I was excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I have really good information which will feed into my blogs, either as updates or new blogs. This new blog is a result of attending this symposium but it’s from an existing campaign run along the ‘Consequences’ campaign run by Macmillan Cancer Support for all cancers. In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

the first question to the first ever joint patient-physician symposium. Hardly any voice due to a winter cold

Social Media and Stats

Blog Milestone.  In May, I tipped over 290,000 views! Thank you all so much Keep sharing!

Facebook Milestone.  I’m aiming for 5000 followers by year-end and this is on track. 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

Figures

  • Facebook 4689.  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’)
  • Twitter3915 / 3017 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 292,626
  • Blog with most views: 9211The 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: 19,303 in Apr 2017.  Why the spike? …. too many to list – see above!

Where did May 2017 Blog views come from? – Top 10 countries:  India on the up.

 

For interest. the 10 Ten Facebook followers by Country – Germany sneaking up.  Interestingly Canada reads more than Australia despite fewer followers.  India reads a lot!

 

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 May.  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 © – Newsletter March 2017

 

Hi NETworkers!

Welcome to my fifth ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).

The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona.  I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time.  Some of them have been great supporters since the inception of my blog and community.

with Grace Goldstein from Carcinoid Cancer Foundation

March was a slower month in blogging terms due to a number of external projects and a continuing flow of private messages. I don’t have an issue with private contact but please note my disclaimer. My winter cold extended into March including during the ENETS/INCA symposium and although I had no voice, I still managed a question to the panel.

Despite a low number of blogs, I still managed to accumulate the second biggest monthly blog views ever. Thank you all so much 

New Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Other News in Mar 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). 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.  I almost doubled the amount of subscribers in March! Currently 168.
  • I’m making new friends in the interventional radiologist community and am waiting on a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do! I’m also seeing an increase from the Pathology community.
  • I’m proud to have been asked to become 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.

Patients Included.  A new campaign for 2017. I was excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I have really good information which will feed into my blogs, either as updates or new blogs. This new blog is a result of attending this symposium but it’s from an existing campaign run along the ‘Consequences’ campaign run by Macmillan Cancer Support for all cancers. In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

the first question to the first ever joint patient-physician symposium. Hardly any voice due to a winter cold

Blog Milestone.  In March, I tipped over the quarter of a million views! Thank you all so much Keep sharing!

Facebook Milestone.  I’m aiming for 5000 by year-end and this is on track. 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.  The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.

capture-invite-friends

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

Figures

  • Facebook 4350.  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’)
  • Twitte