Q-Sphera™ – Next Generation Somatostatin Analogue delivery system?

 

In my article listing the somatostatin analogues and their drug delivery systems pipeline (click here), there has been a very interesting development in a product called Q-Sphera (was previously known as Q-Octreotide).  In a press release, it was announced that an unnamed ‘pharma giant’ has signed a deal with Midatech Pharma Plc that will see it evaluate the latter’s Q-Sphera drug delivery platform.  Later in Feb 2019, the pharma was identified as China Medical System Holdings Limited (based out of Hong Kong).  Adding to the excitement behind this development, it was announced in Mar 2019 that the Spanish Government had conditionally approved a €6.6m loan that will be used to help commercialise this flagship drug.

Midatech’s Q-Sphera™ is an advanced microencapsulation and polymer-depot sustained release (SR) drug delivery platform produced using a novel and disruptive printing based process, with numerous and distinct advantages over conventional reactor based technologies. From a manufacturing perspective Q-Sphera™ is a precise, scalable, efficient, and environmentally friendly microparticle platform. From a clinical perspective Q-Sphera™ ensures monodispersed microparticles that release active drug compounds into the body in a superior linear tightly controlled and predictable manner over an extended period of time from 1 – 6 months.  An injection lasting 6 months sounds very exciting but I have no more detail on the feasibility or likelihood of such a change in frequency with Octreotide or Lanreotide but the press release does mention the possibility, i.e. “Q-Sphera allows drug compounds to be released into the body in a “highly controlled manner” over a prolonged period of time; potentially from a few days to up to six months.”

What’s the main differences?

The current trials are based on the use of Sandostatin LAR (Octreotide) using the Q-Sphera delivery system (previously known as Q-Octreotide). The key aspects of usability are reconstitution and needle size but there is also an inference that less frequent injections could be possible.   A comparison of the trial output is as follows:

  • Reconstitution: For Sandostatin LAR (SLAR)™ the procedure to prepare the product for injection is a complex 30 step error prone process, taking up to 40 minutes and, once reconstituted, the product has to be given immediately to prevent solidifying and wastage of the injection. For MTD201™ Q-Octreotide the preparation process is a simple 5 – 7 minute procedure, after which the product is stable up to 2 hours. For the nurse preparing and giving the injection, the short and flexible process of MTD201™ has clear advantages over the all consuming SLAR process™.
  • Needle size: For SLAR, a large 19G needle is prescribed for the injection to prevent blockage, and often an even large 18G needle is required for successful injection. For MTD201 Q-Octreotide the precision microencapsulation technology means that a much smaller 21G needle can be used, and there are no blockages. Other Q-Sphera products use even finer needles as small as 27G. The importance of this is evident from the first-in-human phase I data where MTD201 had lower injection pain – 8% for MTD201 versus 25% for SLAR™, and much lower injection site
    tenderness – 8% for MTD201 versus 83% for SLAR.

This is an exciting development and I will keep this article live with further information as I receive it.

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

Read my Cure Magazine contributions

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

patients included

Please Share this post

Neuroendocrine Cancer Clinical Trial – Lutetium-177 OPS-201 (Satoreotide)

ops 201

What is Lutetium-177 OPS-201?

This is a ‘next generation’ Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds to both activated and unactivated somatostatin receptors which are upregulated on these tumours. There is far higher binding via this mechanism than standard octreotate. The technical name of the radiopharmaceutical is Satoreotide tetraxetan lutetium-177 (author’s note, I’m guessing but it could be a variant of Lanreotide).  It was once named JR11.

What’s the difference to the current approved therapy? 

Conventional PRRT (e.g. Lutathera, Lu177 Dotatate) is based on a somatostatin receptor ‘agonist’ approach, whereas 177Lu Ops 201 Satoreotide is a receptor ‘Antagonist’.  The differences are quite technical but in the most layman terms , the antagonist has the capability of attaching (binding) to more receptors, including those in a ‘resting’ or ‘inactive’ state, spends more time on the tumor than agonist based therapies. The result is a higher number of receptor binding sites and greater tumor uptake.  In addition it is said to show an improved tumor-to-kidney dose ratio compared to 177Lu-DOTA-TATE.

This would also be reflected in the theranostic use of the drug in Ga68 imaging (i.e. Ga68 Satoreotide).

Useful reading:

This presentation from Theranostics Australia

The Clinical Trial

The clinical trial is named “Study to Evaluate the Safety and Preliminary Efficacy of 177Lu-OPSC001 in NETs”.  The protocol involves 3 cycles 8 weeks apart of intravenous Lu-177 OPS-201. All patients will have baseline Ga-68 octreotate imaging performed.

The treatment is available for all NET patients with a histologically confirmed diagnosis of:

  • unresectable GEP NET (Grade I and Grade II according to WHO classification (2010, Annex 01), functioning and non-functioning).
  • unresectable “typical lung NET” or “atypical lung NET” are acceptable (with the exception of Large Cell Bronchial Neuroendocrine Neoplasms and Small Cell Lung Cancers).
  • malignant, unresectable pheochromocytoma or paraganglioma

Patients who have previously had Lu-177 octreotate (e.g. Lutathera) are not eligible. Patients may have had any other treatment including chemotherapy, radiotherapy or Somatostatin Analogues (e.g. octreotide, landreotide).

There are other inclusion and exclusion criteria to be found within the clinical trial document.  The trial is due to compete in May 2022.

Where is the Trial based?  

At the time of writing and according to the Clinical Trial document, Australia (Melbourne and Perth),  Austria (Vienna), Denmark (Aarhus), Switzerland (Basel), UK (Royal Free London).  Two sites are also listed in France (Nantes and Toulouse) but trial document currently marked as not yet recruiting.

I have anecdotal evidence to suggest one more UK site is possible in 2019, Windsor in UK, a private healthcare provider but it will be open to public and private patients.

What about USA?

I also found an additional trial based in Memorial Sloan Kettering New York designed to take a theranostic approach by using  Satoreotide (JR11) for the pre-treatment imaging, e.g. Ga68 satoreotide (JR11) and the 177Lu version for treatment. The clinical trial document indicates this trial is active but NOT RECRUITING and is entitled “Theranostics of Radiolabeled Somatostatin Antagonists 68Ga-DOTA-JR11 and 177Lu-DOTA-JR11 in Patients With Neuroendocrine Tumors”

Thanks for reading

You may also find these PRRT related articles useful:

PRRT Overview plus locations 

Phase 1 trial of Targeted Alpha-emitter Therapy (TAT) –  212 Pb-AR-RMX

COMPETE trial 177Lu Edotreotide-Solucin

PRRT and Chemo Trial

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

Read my Cure Magazine contributions

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

patients included

Please Share this post

 

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

Lanreotide for Lung NETs – SPINET Clinical Trial

Somatuline (Lanreotide)

There’s been a lot of action in the area of what is termed Gastro-Entero-Pancreatic Neuroendocrine Tumors (GEP-NETs).  It can therefore sometimes appear that Lung NETs are the poor relation.  There are certainly some unmet needs in this area of the anatomy including a lack of research.  Thus far, no prospective trials specifically for patients with lung NETs appear to have been reported.

However, there has been some recent movement. Last year, the use of Afinitor (Everolimus) was approved for progressive, non-functional NET of GI or Lung origin.

SPINET Trial for Lung NETs

In late 2016, I tipped you off about an Ipsen sponsored trial for Lung NETs involving Lanreotide (Somatuline) SPINET is a Phase 3, prospective, multi-center, randomized, double-blind, study evaluating the efficacy and safety of Lanreotide plus “Best Supportive Care” (BSC) versus placebo plus BSC for the treatment of well-differentiated, metastatic and/or unresectable, typical or atypical lung NETs.   The aim of the SPINET study is to evaluate the safety and antitumor efficacy of Lanreotide 120 mg in patients with advanced lung NETs.  I suspect that many Lung NET patients are already receiving somatostatin analogues (Octreotide/Lanreotide) but prescribed only for syndrome/symptom control.

SPINET is now recruiting in many locations (see below).

The countries involved in the SPINET trial are as follows (in case my post goes out of date – see the latest update to the trials document here). Please also check the inclusion and exclusion criteria.

USA, Austria, Canada, Denmark, France, Germany, Italy, Netherlands, Poland, Spain, UK.

In addition to the trial document linked above, you can read more about the SPINET trial here with commentary from a well-known NET Specialist – Dr Diane Reidy-Lagunes, who is the principal investigator for the trial.

How do I get on the trial?

You may be interested in this organisation – Trialbee.  They are a company helping Ipsen to raise awareness of the SPINET trial using a cloud based platform to connect patients, investigators and sponsors (I’ve authenticated their participation with Ipsen).  There is no fee for using their services.  There’s a useful questionnaire which can help you decide if this trial is for you – here.

Please note, if you are concerned about participating in clinical trials, you should always consult your specialist for advice.  

If you are a patient advocate or an advocate organisation, please share with your communities in order that Lung NET patients are at least made aware of the trial.

 

thanks for reading

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

At home with Lanreotide

 

The Somatuline ‘reservoir’ forming in the deep subcutaneous tissue

I think after 105 injections (as at 26th November 2018), I think it’s safe to say I’m now ‘at home’ with Lanreotide (Somatuline Autogel – Somatuline Depot elsewhere).

I was fortunate enough to actually have the injection ‘at home’ via an insurance policy for the first 4 of the years of my treatment.  That was really handy because it was informal, chatty, and I had excellent ‘continuity of service’ with the same nurse administering 80-85% of those 54 injections.  I only had 3 other nurses over that period covering my local nurse’s holiday etc.

When I retired from work, I then had to travel to my local hospital and take my turn amongst the ‘great unwashed’.  Don’t get me wrong, I have the greatest respect for the UK NHS.  However, it’s also true to say my monthly ‘butt dart’ suddenly became more of a conveyor belt feeling, less chatty but in the main, the continuity effect I enjoyed previously was thrown right out of the window.  I had some superb injections but I also had some ‘not so superb’ ones.  There was very little continuity as my 33 hospital administered injections were carried out by 17 different nurses.

If I had to list 6 common discussions between NET patients, issues with their injections of somatostatin analogues would almost definitely be on the list.  Common administration problems with Lanreotide include untrained administrators, fridge problems, incorrect injection site, pinching instead of stretching, plunge speed, painful injections and many others.  All of these issues can be linked to training and continuity.  One thing NET patients like is an expert injection by the same person if at all possible.  It’s also true to say that these issues can cause some anxiety amongst patients leading up to and during the procedure.

side view of Lanreotide with needle cap off but with plunge protector still on

Boom!

I was therefore delighted to be signed up this week for a service in UK called HOMEZONE+ whereby a trained nurse will come to my house and administer my injection.  Although it’s been available for some time, this element of the service has not been particularly well publicised. The drug will arrive a few days prior and be stored in my fridge ready for the injection day.  For those worried about transport, the drug arrives by courier in a refrigerated vehicle.  The service is provided by a third-party via NHS, at no cost to the NHS or the patient, as it is a service funded by Ipsen Ltd.

Now …… I got wind of this service 6 months prior to starting but it took me sometime to discover what it was all about, despite a lot of ‘digging’. I had previously heard of other elements of this service whereby the drug is delivered directly to patient’s house for self injection, injection by a trained carer or for injection at a third-party site such a local GP (PCP).  However, the service I’ve signed up for is none of those, this is a service where a trained nurse will come to my house and administer the injection.  Happy days.  Royal Bournemouth Hospital is actively promoting the scheme to patients being administered with Lanreotide.

But ….. It was also suggested to me that not all hospitals are making the service available.  If this of interest to other UK patients, I suggest you initially make contact with your specialist nurse or doctor and enquire (….. and if it was me, I would ask why not if they’re not making it available!).  I’ve probably documented all I know but happy to chat more with UK patients about the scheme – you can message me here:  Message Ronny Allan

Cake with Needle
Celebrating 100 Lanreotide injections

What about outside UK?

I researched to see if other countries have something similar for Somatuline (Lanreotide) – please note not all patients will be eligible so you need to check first:

1.  The Netherlands.  I attended ENETS Barcelona and sat in on a presentation from a Nurse in The Netherlands who described a similar scheme.  The presentation was entitled Home Injection Service for Somatostatin Analogues so may also include Octreotide.  Contact is Wanda Geilvoet at the Erasmus Medical Centre in Rotterdam.

2.  USA.  Ipsen US appears to have a similar scheme through their Ipsen Cares program.  It’s called “Home Health Administration (HHA)”.  This is available for patients who are unable to receive their Somatuline Depot injections at the doctor’s office. Eligible patients can have a nurse visit their home to administer their injections. There is no cost to the patient for this option. HHA must be requested by the doctor and the patient must be enrolled in IPSEN CARES.  The Nurse HHA Program is an additional offering of
IPSEN CARES available via a doctor for all eligible patients prescribed
Somatuline Depot.
• A physician must prescribe Somatuline Depot to be administered by Nurse
Home Health Administration for the patient.
• The program is available to most patients covered by commercial insurance
plans.
• Patients may not participate if prescriptions are eligible to be paid in part or
full by any state or federally funded programs, including, but not limited to
Medicare or Medicaid, VA, DOD, or TRICARE.
• Residents of Massachusetts, Michigan, Minnesota, and Rhode Island are not
eligible.

Click here for more details.

3.  Canada.  There is not enough detail on the Ipsen Canada site to say there is a scheme but worth asking.  Click here

4.  Australia.  There seems to be a programme called ‘Assist’.  Click here for more details.

5.  Republic of Ireland.  They have the same service as UK, also called HomeZone.  They will send a trained nurse out to your home monthly to do the injection for you free of charge. To arrange, the number is 01 4291820

I will add other locations as and when I find out. 

Let’s share data!

I’m sure there must be more countries involved so please let me know.  In fact, would UK patients let me know if you are on the ‘Homezone’ scheme where a nurse comes to your house and administers the drug, and via which hospital was this arranged.  I’ll update the blog so we can all find out about it.

How’s it going so far?

On 26th November 2018, I had my 18th ‘HomeZone+ nurse administered injection and a permanent nurse allocated to my area. It’s a first class service  from the main UK provider – Healthcare at Home (HAH) (I’m told Lloyds Pharmacy do certain areas).   I’m told which day it will arrive and I receive two text messages with timings, the second one is a more precise time allowing me to get on with my life.  The Nurse then makes an appointment to come and administer the injection. This works excellently too.  The Nurse calls me with some notice in order to get the injection out of the fridge ready for administration.  The injection is given very efficiently and my next appointment is made ready for 28 days time.  I also found out that sharps box provision and collection is available through the programme, another bonus.

20190114_123409
Received, ready for next injection

 

SANDOSTATIN LAR (OCTREOTIDE) PROGRAMMES

Novartis has similar programmes – click here.

You may also appreciated my other blog posts on Somatostatin Analogues and Lanreotide (Somatuline):

Lanreotide – it’s calling the shots

Lanreotide vs Octreotide

PoNETry – An Ode to Lanreotide

A video showing how Lanreotide works

Lanreotide trial for Lung NETs (SPINET)

Somatostatin Analogues and Delivery Methods in the Pipeline

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!

patients includedThis is a Patients Included Site

Please Share this post for Neuroendocrine Cancer awareness and to help another patient

 

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

Where did March Blog views come from? – Top 11 countries:  Denmark is a new entry.

 

 

For interest. the 10 Ten Facebook followers by Country – Spain overtakes France 🙂

Thanks for your great support in March.

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

community_titled_transparent_2013-10-22

NETwork with Ronny © – Newsletter February 2017

network-with-ronny

Hi NETworkers!

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

February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don’t have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat).  Thank you all so much 

January’s success also led to increased Facebook followers and I broke through the 4000 milestone with a plan to reach 5000 by the end of the year or before.  If I grew at January’s rate, it could easily be 6000 but that’s probably wishful thinking!

The month ended with a bang!  The long-awaited FDA approval of ‘XERMELO’ (Telotristat Ethyl) was announced yesterday. Check out my blog which has all the links you need in one area.  Click here to read

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 Feb 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 reached 100 email subscribers today!
  • I’m making new friends in the interventional radiologist community having been invited to join their twitter chat.  That turned out to be profitable as I won $40 of Starbucks e-gifts for being a quick tweeter!  I now have some new friends who are producing 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 proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum.  I’ll be reporting more on this in the coming weeks.

Patients Included.  A new campaign for 2017.  I’m very excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March.  I’m being sponsored by the International Neuroendocrine Cancer Alliance (INCA). I’ll be tweeting and posting stuff live from the conference, look out for this.

Blog Milestone.  Accelerated viewing figures should put me into a quarter of a million blog views by the end of this month! Thank you all so much Keep sharing!

Facebook Milestone.  My 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.  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 February Blog views come from? – Top 10 countries:

capture-10-ten-country-feb-17

For interest the 10 Ten Facebook followers by Country:

capture

Thanks for your great support in February.

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

community_titled_transparent_2013-10-22

NETwork with Ronny © – Newsletter January 2017

network-with-ronny

Hi NETworkers!

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

January was a month for breaking records.  I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they’re broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer.  Thank you all so much 

January was also a month for making new friends after being invited to speak to an audience of 30 pharma managers at Ipsen’s Germany HQ near Karlsruhe.  I was made very welcome by the Ipsen staff and I think it’s great they want to hear the patient voice.  Bad weather was coming in fast and I only just escaped in time from Frankfurt Airport, suffering a 2 hour delay while the plane was ‘de-iced’.  Nonetheless, I really enjoyed a flying visit to a country where I had lived for 12 years in the 70s/80s.  See my Facebook post about this visit: https://goo.gl/hyJ0Si

New Blogs Published

A busy month for new blogs. 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:

Other News in Jan 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.  Two new openings in Dec to report:

  • Ipsen isn’t really a new audience but the individual employees at their German HQ are now more aware of life with Neuroendocrine Cancer.  See my Facebook post about this visit: https://goo.gl/hyJ0Si
  • 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.  You can sign up for this newsletter here as I won’t be posting it every day.  Click this link and sign up if you think this is something you’d be interested in receiving.
  • I’m making new friends in the interventional radiologist community having been invited to join their twitter chat.  Many of us will know an Interventional Radiologist (some are known as Interventional Oncologists) following treatment (e.g. a liver embolization). I’m hoping to soon have access to some great videos about their work with NETs.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum.  I’ll be reporting on this in the coming weeks.

Patients Included.  A new campaign for 2017 and I’ll shortly be bringing you news of an opportunity in Mar 2017.  We want to be included right?

Blog Milestone.  My blog tipped over 220,000 views in Jan and I’m half way from the 1 Jan position to reaching a quarter of a million.  Thanks – keep sharing!

Facebook Milestone.  My 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

Figures

Where did January Blog views come from – Top 10 countries:

capture-blog-jan-17

For interest the 10 Ten Facebook followers by City:

capture-cities

Thanks for your great support in January – a great start to 2017.

 

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

community_titled_transparent_2013-10-22

Neuroendocrine Tumor Drug Clinical Trial – Cabozantinib (includes news on Pheochromoctyoma and Paraganglioma)

What is Cabozantinib?

Cabozantinib is an oral drug which works by blocking the growth of new blood vessels that feed a tumour. In addition to blocking the formation of new blood cells in tumours, Cabozantinib also blocks pathways that may be responsible for allowing cancers cells to become resistant to other “anti-angiogenic” drugs. It is a type of drug called a growth blocker.  Cabozantinib has been studied or is already in research studies as a possible treatment for various types of cancer, including prostate cancer, ovarian cancer, brain cancer, thyroid cancer, lung cancer, and kidney cancer. During my research, I found that it has a connection to Medullary Thyroid Cancer (MTC) which is a type of Neuroendocrine Cancer, frequently associated with Multiple Endocrine Neoplasia (MEN).  Cabozantinib, under the brand name of ‘Cometriq’ was approved by the FDA in 2012 for use in MTC.  Read more about Cometriq here.  It’s also been approved by the FDA for advanced renal cell carcinoma (RCC) (branded as Cabometyx). I also discovered that there is an exclusive licensing Agreement with the manufacturers (Elelixis) and Ipsen (of Lanreotide fame) to commercialize and develop Cabozantinib in regions outside the United States, Canada and Japan

Growth blockers are a type of biological therapy and include tyrosine kinase inhibitors, proteasome inhibitors, mTOR inhibitors, PI3K inhibitors, histone deacetylase inhibitors and hedgehog pathway blockers.  Cabozantinib is a tyrosine kinase inhibitor (TKI).  They block chemical messengers (enzymes) called tyrosine kinases.  Tyrosine kinases help to send growth signals in cells so blocking them stop the cell growing and dividing.  Some TKIs can block more than one tyrosine kinase and these are known as multi-TKIs.

cabozantinib-picture
Example action of Cabozantinib

So Capozantinib is a tyrosine kinase inhibitor and is therefore a biological therapy and growth blocker just like Everolimus (Afinitor) and Sunitinib (Sutent) – some texts describe thelattero two as chemotherapy but this is just not accurate.

Very technical process but in the simplest of terms, Cabozantinib is designed to disrupt the actions of VEGF (a growth factor) and MET (a growth factor receptor) which promote spread of cancerous cells through the growth of new blood vessels.  Whilst we are on this subject, please note Everolimus (Afinitor) is an mTOR inhibitor and Sunitinib (Sutent) is a tyrosine kinase inhibitor. Many people think these drugs are a type of chemo – that is incorrect, these are targeted biological therapies.  See more on this by clicking here.

What is the current trial status of Capozantinib?

A Phase III trial is now recruiting entitled Cabozantinib S-malate in Treating Patients With Neuroendocrine Tumors Previously Treated With Everolimus That Are Locally Advanced, Metastatic, or Cannot Be Removed by Surgery”. 

The trial has 172 locations across the US (see link below). The primary study (final data) is scheduled Jan 1st 2021.

You can read the trial documentation by clicking here.

Progress report

  1. Poster submission for 2017 Gastrointestinal Cancer Symposium
  2. Onc Live output from the 2017 Gastrointestinal Cancer Symposium
  3. Output from NANETS 2017
  4. A funded piece of research by the NET Research Foundation – check it out herelooks like they are trying to figure out what patients might benefit from Cabozantinib using biomarker data to predict response.
  5. Dr Jennifer Chan speaking in 2018 about the drug potential.  (Apologies for the use of the out of date term ‘Carcinoid‘).
  6. Phase 3 Clinical Trial Document – click here

————————-

UPDATED 2018 – There’s also another trial looking at unresectable metastatic Pheochromocytomas and Paragangliomas

A Phase 2 Study to Evaluate the Effects of Cabozantinib in Patients with Unresectable Metastatic Pheochromocytomas and Paragangliomas 

This part is from an article collaboration between MedPage Today® and the American Association of Clinical Endocrinologists

BOSTON — Cabozantinib (Cabometyx) may benefit patients with malignant pheochromocytomas and paragangliomas, according to results of a phase II trial presented here.

Patients receiving cabozantinib (Cometriq) treatment experienced notable tumor shrinkage in the lymph nodes, liver, and lung metastases, according to Camilo Jimenez, MD, of the MD Anderson Cancer Center in Houston, and colleagues.

Additionally, progression-free survival significantly increased after treated to 12.1 months (range 0.9-28) compared with just 3.2 months prior to treatment, they reported at the American Association of Clinical Endocrinologists (AACE) annual meeting.

Cabozantinib treatment was also tied to an improvement in blood pressure and performance status, as well as remission of diabetes among these patients.

“Malignant pheochromocytomas and paragangliomas are frequently characterized by an excessive secretion of catecholamines. [Patients] have a large tumor burden and they have a decreased overall survival,” explained Jimenez. “Tumors are frequently very vascular and frequently associated with bone metastases. In fact, up to 20% of patients who have malignancy of pheochromocytomas and paragangliomas may have predominant bone metastases.”

He added that “an interesting aspect of this tumor is that C-MET receptor mutation have been found in occasional patients with malignant pheochromocytomas and paragangliomas.”

Cabozantinib is an anti-angiogenic tyrosine kinase inhibitor, which also targets RET, MET, and AXL. It is approved for metastatic medullary thyroid cancer, and was more recently approved for first-line treatment of advanced renal cell carcinoma.

“MET pathway is also involved in the development of bone metastases. In fact, cabozantinib is a very effective medications for patients who have bone metastases in the context of cancer of different origins,” Jimenez said.

In order to be eligible for the trial, patients with confirmed pheochromocytoma or paraganglioma had to be ineligible for curative surgery, have ≥3 months life expectancy, no risk for perforation or fistula, and adequate organ functioning. Prior to cabozantinib initiation, patients could not receive chemotherapy or biologic agents within 6 weeks, radiation within 4 weeks, or MIBG within 6 months.

Following histological confirmation of disease progression >1 year according to RECIST 1.1, the trial included 14 patients with measurable disease and eight patients with predominant/exclusive bone metastases. Fifteen patients subsequently enrolled into the trial, six of whom had germline mutations of the SDHB gene.

All participants were all started at an initial daily dose of 60 mg of cabozantinib, which was subsequently reduced down to between 40 to 20 mg due to toxicity in 13 patients based on tolerance.

The majority of these patients with measurable disease experienced some level of disease response. Six patients reported a partial response, defined as over a 30% reduction, while three patients achieved moderate response, marked by a 15%-30% reduction. Five of the patients with predominant bone metastases reported disease stabilization, according to results of an FDG-PET scan. One patient experienced disease progression while on treatment.

Overall, cabozantinib was generally well-tolerated without any grade 4 or 5 treatment-related adverse events reported. Some of the most common adverse events reported included grade mild dysgeusia, hand and foot syndrome, mucositis, fatigue, weight loss, and hypertension, according to the authors.

  • Primary Source – American Association of Clinical Endocrinologists meeting – AACE 2018; Abstract 142. attended my Medscape writers

You can see the Pheo/Para clinical trial document by clicking here.

————————————–

Summary

I generated this blog article to add value rather than just post the outputs for your own perusal.  I hope you find it useful.

Please note that taking part in a clinical trial is a big decision and must be considered carefully in conjunction with your specialists if necessary.  This article is not suggesting this trial is right for you.  Please check the inclusion and exclusion criteria in the trials document carefully. (Pheo/Para patients see other clinical trial link above)

NETwork with Ronny © – Newsletter December 2016

 

Hi NETworkers!

Welcome to my second ‘community’ newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!).

December was a particularly special month.  For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards.  This paid off and I won the Best in Show ‘Community’ category in addition to being shortlisted as one of 5 finalists in the blog category.  The community award was special because it means we all won the award as a part of this ‘Community’.  I’ve picked up a whole new bunch of friends outside the NET world bringing much-needed exposure to NET Cancer. I had a quiet week resting before I resumed normal activity and then a sprint finish at the end of the month took me over the magic 10,000 blog hits figure (and even more on Facebook).  Stick with me because I really need your help and support and anyone else you know who can assist.  The WEGO awards brought a significant increase in twitter followers.

Blogging

A quiet month in terms of numbers of blogs. 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:

  • My Nov Newsletter!
  • A blog all about Carcinoid Crisis – potentially one of the most important pieces of information you need to know.  Read here.
  • My award announcement!
  • First in a series of ‘spotlight on ……’ posts – this one on Pheochromocytomas and Paragangliomas.  Read here.
  • I shared an inspiration message with you – one that I received from an old friend. Read ‘Keep your light burning’ which had a great response.
  • Confused about the difference between Lanreotide and Octreotide?  This blog will help – it got a really good response and you can read it here.  I also received lots of questions about the individual drugs which was great and shows the importance of this subject to patients out there.

Other News in Dec

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.  Two new openings in Dec to report:

  • The exposure during the build up to the 2016 WEGO Health Activist Awards where I made the final in two categories continued into Dec culminating in the award win (you can listen to the announcement live here).  I also featured in a radio show just before the announcement and you can listen to it here (start at 40.30).
  • 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.  You can sign up for this newsletter here as I wont be posting it every day.  Click this link and sign up if you think this is something  you’d be interested in receiving.

Blog Milestone.  My blog tipped over 200,000 views in Dec and it’s already accelerating toward a quarter of a million.  Thanks – keep sharing!

Facebook Milestone.  My Facebook page was 2 years old in Dec 🙂  Please recommend this page to anyone you think would be interested.

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Invite or recommend my page please – let’s grow awareness!

Figures

Where did December Blog views come from – Top 10 countries (Dominican Republic seems to be a new source of interest):

capture

For interest the 10 Ten Facebook followers by Country.

capture1

Thanks for your great support in December.  Looking forward to serving you in 2017!

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

community_titled_transparent_2013-10-22

NETwork with Ronny © – Newsletter November 2016

 

network-with-ronny
Please share me!

 

Hi,

welcome to my first newsletter, a pilot for a monthly summary of NET news, views and ICYMI (in case you missed it!).

What a month November has been – we had NET Cancer Day build up and I’ve been working hard to put on a good show for the 2016 WEGO Health Activist Awards (results expected around 6/7 Dec) whilst at the same time maintain my other campaigning activity across a wide range of social media platforms.  Due to increased activity, I recorded the second highest monthly viewing figures ever – over 13,000 hits on my blog site in one month (and even more on Facebook).  Not bad for a little backstreet disease – but my intention is to take it to the high street (main street).  Stick with me because I really need your help and support and anyone else you know who can assist.

Blogging

I seem to have produced an above average amount of blogs this 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:

Other News in Nov

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.  Two new openings in Nov to report:

  • Cancer Knowledge Network.  An article published in what is said to be North America’s most widely read cancer education resource.  Read it by clicking here.
  • Mentioned by Macmillan Cancer, one of the world’s biggest Cancer support organisations.  See here.  You could increase the impact of this opening by clicking on the black star here to increase my likes number.
  • And ….. there has been masses of exposure during the build up to the 2016 WEGO Health Activist Awards where I made the final in two categories:  Blog and Community.

Lutathera (PRRT) Delay. Not the best news from USA where it was announced the approval of Lutathera (PRRT) would be delayed beyond the projected date of 28 Dec 16. A delay of several months seems to be forming on the airwaves but the expanded access program (EAP) will be extended until this issue has been resolved.  CCF has great info on EAP – click here

Living with NETs Website. A new website sponsored by Ipsen (Lanreotide manufacturers) was launched on NET Cancer Day.  This is a special site for me as I was involved with other patients in advising and featuring on the site.  Take a look by clicking here.  Check out my patient video here.

More treatment options for Lung NETs?  Lung NETs lack many of the treatments available for other types of NET but a new trial of Lanreotide could help.  Read here.

Figures

For interest the 10 Ten Facebook followers by Country.

capture

 

Thanks for your great support in November.  Looking forward to serving you in December!

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Neuroendocrine Cancer – Exciting Times Ahead!  

exciting-times-ahead_edited

In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc.  Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly.  However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time.  There’s even more in the pipeline and I’m hoping to continue to bring you news of new stuff as I have been doing for the last year.

Some of these new diagnostics and treatments will benefit eligible patients who are in diagnosis/newly diagnosed and also those living with the disease. As we’re now in our awareness month, let’s recap:

Scans

Many NET Patients will undergo a nuclear scan to confirm CT results and/or to detect further neuroendocrine activity.  Basically, a nuclear substance is mixed with a somatostatin analogue, injected into the patient who is then scanned using a 360-degree gamma camera.  As gamma cameras are designed to show up radioactive activity; and as Neuroendocrine Tumour cells will bind to the somatostatin analogue, it follows that the pictures provided will show where Neuroendocrine tumours are located.  Many people will have had an ‘Octreotide’ Scan (or more formally – Somatostatin Receptor Scintigraphy) which is still the gold standard in many areas. The latest generation of nuclear scans is based on the platform of the Gallium (Ga) 68 PET Scan. The principles of how the scan works is essentially as described above except that the more efficient radioactive/peptide mix and better scan definition, means a much better picture providing more detail (see example below). It’s important to note that positive somatostatin receptors are necessary for both scans to be effective. Europe and a few other areas have been using the Ga-68 PET scans for some time (although they are still limited in availability by sparse deployment). The latest excitement surrounding this new scan is because they are currently being rolled out in USA.  Read about the US FDA approval here.  You may hear this scan being labelled as ‘NETSPOT’ in USA but this is technically the name for the preparation radiopharmaceutical kit for the scan which includes a single-dose injection of the organic peptide and the radionuclide material. Take a look at a comparison of both scans here:

octreo-vs-g68
Octreoscan output vs Gallium 68 PET output

This slide from a recent NET Research Foundation conference confirms the power of more detailed scanning.

Peptide Receptor Radionuclide Therapy (PRRT)

Similar to above, this treatment has been in use in Europe and other places for some time but is also to be formally deployed in USA if, as is expected, the US FDA approval is positive at the end of this year (Read here).  In the most basic terms, this is a treatment whereby a peptide is mixed with a radionuclide and is drip fed over a number of treatments (normally up to 4 spaced out over a year). The concept of delivery of the ‘payload’ to the tumours is actually very similar to the preparation for a radionuclide scan as described above, the key difference is the dosage and length of exposure whilst the tumours are attacked. Once again, receptors are important. The NETTER series of trials showed good results and this is an excellent addition to the portfolio for those patients who are eligible for this treatment. Fingers crossed for the US FDA announcement due by the end of this year.  Also fingers crossed that PRRT returns to the NHS England & Wales portfolio of available treatments next year.  The Carcinoid Cancer Foundation has an excellent summary of PRRT here.

PRRT and Chemo Combo

Whilst on this subject, I also want to highlight the innovative use of combo therapies in Australia where they are combining PRRT and Chemo (PRCRT).  I blogged about this here:

PRRT CAPTEM

Somatostatin Analogues and their Delivery Systems

Somatostatin analogues are a mainstay treatment for many NET Patients.  These drugs target NET cell receptors which has the effect of inhibiting release of certain hormones which are responsible for some of the ‘syndromic’ effects of the disease.  Again, receptors are important for the efficacy of this treatment.  You can read the ‘geeky’ stuff on how they work here.  These drugs mainly comprise Octreotide (provided by Novartis) and Lanreotide (provided by Ipsen). The latter has been around in Europe for 10 years and was introduced to North America earlier this year.  Octreotide has been around for much longer, almost 17 years.  When you consider these peptides have also been used to support nuclear scans that can detect the presence of tumours; and that studies have shown they also have an anti-tumour effect, they really are an important treatment for many NET Patients.  I’ve blogged about new somatostatin analogues in the pipeline and you can read this here.  This blog also contains information about new delivery systems including the use of oral capsules and nasal sprays (…….. very early days though).

Treatment for Carcinoid Syndrome

telotristat-etiprate-clinical-trial-serotonin-as-a-key-driver-of-carcinoid-syndrome

For maintenance and quality of life, the release of a Telotristat Ethyl for Carcinoid Syndrome is an exciting development as is the first new treatment for Carcinoid Syndrome in 17 years.  This is a drug which is taken orally and inhibits the secretion of serotonin which causes some of the symptoms of the syndrome including diarrhea.  It must be emphasised it’s only for treating diarrhea caused by syndrome and might not be effective for diarrhea caused by other factors including surgery.  Read about how it works and its target patient group in my blog here.

Oncolytic Virus

oncolytic

The announcement of a clinical trial for the Oncolytic Virus (an Immunotherapy treatment) specifically for Neuroendocrine Tumours is also very exciting and offers a lot of hope. Click the photo for the last progress update.  

Everolimus (Afinitor)

013490_PNETUS_iPad_pg2v2

Earlier this year, AFINITOR became the first treatment approved for progressive, non-functional NETs of lung origin, and one of very few options available for progressive, non-functional GI NET, representing a shift in the treatment paradigm for these cancers.  It’s been around for some time in trials (the RADIANT series) and is also used to treat breast and kidney cancer.  It’s manufactured by Novartis (of Octreotide fame).  It has some varying side effects but these appear to be tolerable for most and as with any cancer drug, they need to weighed against the benefits they bring.

In technical terms, AFINITOR is a type of drug known as an ‘mTOR’ inhibitor (it’s not a chemo as frequently stated on NET patient forums).  Taken in tablet form, it works by blocking the mTOR protein. In doing so, AFINITOR helps to slow blood vessels from feeding oxygen and nutrients to the tumour.

Check out Novartis Afinitor website for more detailed information.  There’s an excellent update about AFINITOR rom NET expert Dr James Yao here.  The US FDA approval can be found here.

Summary

………. and relax!   Wow, I’ve surprised myself by collating and revising the last 12-24 months.  Dr James Yao also agrees – check out his upbeat message in the attached 2 page summary.  You may also like another upbeat message from Dr Jonathan Strosberg by clicking here.

Neuroendocrine Cancer – who’d have thought it?  ….. a bit of a dark horse.

Thanks for reading

Ronny

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

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Most Popular Posts

Sign up for my twitter newsletter

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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

 

Living with NETs – a patients included award winning site

livingwithnets ronny story

It’s no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients.  It was subsequently launched on NET Cancer Day 2016 and is very aptly named ‘Living with NETs‘.  Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative.  And, this is great awareness for Neuroendocrine Cancer at a major pharma event.

eye for pharma

I’m also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018.

eyeforpharma ronny and isabelle

I’m quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site but because I sincerely believe it has the potential to be a fantastic facility for anyone interested in NETs, whether they be a patient, a carer, a health worker or anyone who wants to find out more.  And it’s not just learning about NETs, it’s so much more than that.  It’s also international and they are rolling out language by language over time (as at 13 Mar 2018, it’s available in English, German and Portuguese).

living with nets home

me and paul allen
Working with Kanga and Ipsen to design the site

Those who know me best will know that I fervently believe that patient experience and patient stories are the best tools we have for awareness and this site is strong in this element. Check out my series of Living with NETs videos available on the site – click here

Doctors might be the experts in your condition

Do you know what?  I’m sensing a change in thinking, I’m sensing that more and more people and their organisations are starting to come to the conclusion that patients have a part to play in all sorts of medical areas.  On the subject of Doctors, I’m of the solid opinion that we should be working more in partnership with our Doctors whether they know about NETs or not.  There doesn’t seem to be any point in beating them up because they don’t know enough about NETs.  Let’s help educate them instead!

living with nets patient stories

 patient is the most underused person in healthcare

Check out the site HERE

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

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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!

patients included

 

Every Day is NET Cancer Day!

Every day is NET Cancer Day

Opinion.  In 2014, I experienced NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn’t really do that much for me.  Spookily I even woke up on 10 Nov 2010 after major surgery.  Read about this here – I even woke up on November 10th after major surgery.

The build up to these events normally doesn’t start in earnest until around 3 months prior to 10 Nov. On or around this day, people meet up, patient conferences and support meetings are held, thousands of tweets and Facebook posts are published, people make and eat cakes, and money is raised. I suspect awareness of NETs benefits but these things can quickly be forgotten outside the rather small world of NET Cancer patients, specialists, supporters and advocates.

If ‘N’ is equal to the amount of awareness you can physically do, then ‘N + 1’ is the amount of awareness you need. You can never have enough awareness.  For me, one day doesn’t cut it.  Some cancers have a whole month but they tend to be the big most common ones.

I’m in awe of those advocate organisations who organise these annual events and the patients who gladly join in to help by giving up their time (including NET Cancer Day and all its affiliate organisations).  There’s a lot of time and effort required.  It’s rather easy for me as I sit in my chair doing my bit – but I am doing it every day. A big advantage I have is that we now live in a connected world and there is an almost unlimited reach to a broad spectrum of people ranging from politicians to the worried well looking for a diagnosis. They all have something in common though …. they’re all connected to the internet and looking for information, looking for a feed.  Social media is really powerful but the message needs to be compelling to persuade someone to read my feed again and again.  I guess when you are marketing something on a face to face basis, it’s a different ball game but the principles of persuading someone to ‘read your feed’ are the same.

Having analysed 10th November activity and the week leading up to it, I think it was pretty much like last year, i.e. the same old tired old clichés and icons, together with out of date and inaccurate information which patients and patient advocate organisations share between each other.   I want new audiences and ones who will stick with NETs instead of just liking a tweet on November 10th.  This is what the NET Community needs too. I’m afraid cartoon animals in the most ridiculous scenarios are not going to attract long term support from outside the community. This is not a criticism of any person working for or fund raising for a NET patient organisation, I know they work very hard.  This is about the out of date and incoherent strategy.

Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD MP in the UK Parliament
Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD (now Sir Desmond Swayne) MP in the UK Parliament

Although I woke up on November 10th after my surgery in 2010, I only really woke up to NET Cancer Day (the event) in 2014 where I and others met and lobbied our respective  Members of Parliament at a NET Patient Foundation sponsored event.  I was also honoured to lobby side by side with my surgeon (Neil Pearce) who is also one of the Medical Trustees for the Foundation.  I felt that activity made a real difference and I was so enthused by this event, I decided to step up my own campaigning activity using my blog to push and push for more recognition of our disease. Attracting the notice of politicians is a good awareness tactic as long as the foot remains on gas peddle.  In regards interactions with politicians, as another example I’m always happy to see the annual state declarations of support in USA.

When I consider the PR campaigns of other cancer types, I admit to being a tad envious. For example in the UK, breast, lung, bowel and prostate cancers probably have more awareness ‘value’ in a single week, than NETs get in a single year. However, these are the ‘big 4’ cancers and as a consequence attract a lot of support (and therefore resources) and are backed by government public health campaigns (e.g. in the UK, the ‘be clear on cancer’ campaign covers most of these cancers).  OK, they have a lot of resources but one thing I see across the board in these campaigns is the lack of icon adulation you see in NET awareness – rather they focus on firmly on PEOPLE and I  believe that is part of their success.  

When I suggest to ditch the animal analogies, people say to me “what icon would replace it”. I simply say “why you even need to replace it” as we’re talking about adopting a coherent strategy. By the way, name another successful cancer strategy using an animal as their ‘cover page’.  Spoiler alert, there isn’t one. 

Because NETs is a less common disease, the necessary ‘clout’ needs to be as wide as possible and this means international efforts to supplement national campaigns, particularly for awareness and recognition.  But the strategy needs to be coherent, effective and up to date. Of course, we need to get patients on board because patient stories are vital, particularly (and accurately ….) in the national news and TV. Resources (people and cash) are always going to be an issue and some high-profile patients or ambassadors would be extremely useful but they tend not to want to get involved.  Read my Human Anatomy blog to understand more about the effects of this issue.

I strongly believe we need new audiences – nationally and internationally.  To be more attractive to the ‘outside’ and new audiences, we also need a convincing and compelling ‘line’.  By ‘line’ I don’t just mean an icon or a phrase, I mean a whole ‘PR’ package. It’s very difficult for rare and less common cancers to get high-profile and continuous publicity (sometimes, to be rare or less common is to be ignored).  Therefore, this ‘line’ needs to be something that captures people’s imaginations and persuades them to be associated with the cause. It also needs to avoid being too ‘introvert’ by using oblique, confusing, outdated, single issue icons conveyed by what are essentially memes and which are only liked and shared by patients.  It also needs to be accurate.

New audiences means new thinking ….. different thinking.  One of my methods is to increase the audience reach by forming relationships with non-NET organisations including physicians.  Some of this is extremely hard work. For example, the 2016 WEGO Health Awards took a considerable amount of personal effort and time and ditto for 2017 and 2018. However, there’s a lot of new audiences out there now hearing about NETs that had never heard of the disease until I was able to use the platform of these awards.  It’s worth it.  Here’s a statement from the CEO of WEGO Health:

Jack WEGO NETs

My animal free blog site will hit one million views next year and I’m a relative newbie.  So perhaps there is another way?

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 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. Now, not a day goes by where I have not tweeted or posted something about Neuroendocrine Cancer. Although 10 Nov is approaching once again, for me……..

EVERY SINGLE DAY OF THE YEAR IS NET CANCER DAY

RonnyAllan strap

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

Read my Cure Magazine contributions

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

 

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