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

RonnyAllan.NET – Community Newsletter February 2018

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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!


4 Comments

  1. Jeff Drifmeyer says:

    Hello all,
    Is anyone aware of past or ongoing studies investigating the possibility of environmental exposures causing or contributing to NETs?
    For example, any research on the possible role of endocrine disrupting chemicals in the environment as ‘triggering’ problems in the complex endocrine system?
    thanks for any leads, insights, & best regards

    Like

    • Ronny Allan says:

      the only scientifically proven cause of NETs is genetic (e.g. MEN etc). However, a scientific collaboration between UCL, Dana-Farber Cancer Institute, UCSF Medical Centre and the UCL Cancer Institute / Royal Free Hospital London has been awarded a $1.2m accelerator grant from the Neuroendocrine Tumor Research Foundation (NETRF) to help advance research into small intestine neuroendocrine tumours (SI-NETs). Principal Investigators, Dr Matthew Meyerson (Dana-Farber), Dr Eric Nakakura (UCSF) and Dr Chrissie Thirlwell (UCL), are using the funding to support a research programme that aims to find the cause or causes of SI-NETs. The team’s approach has the potential to identify inherited, somatic (non-inherited) genetic, epigenetic and infectious causes of SI-NETs. Almost all cancers are known to be caused by harmful changes in the DNA of cells. The specific changes in DNA that convert normal cells of the small intestine into neuroendocrine tumour cells are not yet understood. However, this could be set to change as rapid advances in DNA sequencing technology now provides a tremendous opportunity to study SI-NET DNA in more detail – something that the research team hope to exploit to its full potential.
      “We are investigating all credible possibilities.” says Dr Chrissie Thirlwell, Senior Lecturer and Consultant Medical Oncologist at UCL Cancer Institute and the Royal Free Hospital, “We are questioning whether SI-NETs are caused by DNA changes in later life or by aberrant genes inherited at birth; environmental influences or infectious agents – or is it a combination of all these factors? In addition, we’ll be investigating the cell of origin for these tumours – a really exciting part of the project. By utilising single cell sequencing approaches, we can try and uncover which cells initiate SI-NET tumour formation. This information can then be used to develop of cellular or animal models for use in further research.

      Like

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