EndolucinBeta – Ronny Allan – Living with Neuroendocrine Cancer

NETwork with Ronny © – Community Newsletter DECEMBER 2017

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

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

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

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

I caught this news in my social media NET

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

Blog Site Activity

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Dec 2017 may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

	NETs – A Surveillance Society – make sure you are getting the right checks
	Updated version of Somatostatin Analogues Pipeline (including news of delivery systems – smaller needles, nasal spray, capsules)
	Great video update from Dr Jonathan Strosberg
graphic courtesy of ITM AG	Expanding PRRT update
	My November Newsletter in case you missed it.

Other Activity

December was quiet but I’m out there looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

Please join my 2018 awareness campaign event here (select ‘Going’)

I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer

Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so)

The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

In December, the total number of people from USA on my main Facebook page exceeded 3000 – check out the announcement here.

New Audiences for NET Cancer

From Day 1, I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. I’m doing this although it may not always be apparent.

Article features.
- Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:

Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs. In Dec, I tweeted 140 times on my personal account which led to over 100,000 views. I was mentioned 90 times by other tweeters, 2526 people looked at my profile and I gained 40 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email. I’ve been pushing this newsletter quite a bit in Dec which has upped my subscriber base to 415 – a 10% increase on last month.

WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation!

Speaking Engagements

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

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

Social Media and Stats

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

Facebook Milestone. I would love to have achieved 6000 followers by the end of 2017 but that is now an almost impossible challenge without your direct involvement! The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 240 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Facebook – 5583. 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).
Twitter – 4286 / 3335 Follow me here @RonnyAllan1 / @NETCancerBlog
Total Blog Views: 447,620
Blog with most views: 14,162 – Neuroendocrine Cancer – Early Signs of a Late Diagnosis
Most blog views in one day: 3612 on 31 October 2017 – a new record! Why the spike? ….. “Neuroendocrine Cancer – tricks, no treats”
Most blog views in one week: 10,004 in October/November 2017. Why the spike? ….. “Neuroendocrine Cancer – tricks, no treats”
Most blog views in one month: 25912 in October 2017. Why the spike? ….. “Neuroendocrine Cancer – tricks, no treats”

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

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

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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

Expanding PRRT – Trial of 177Lu-Edotreotide (Solucin®) – COMPETE Phase 3 Clinical Trial

graphic courtesy of ITM AG

In the News.

On the heels of the approval of PRRT in USA and whilst we all wait on positive national announcements of PRRT approval in UK and elsewhere, here’s news of a new PRRT compound undergoing a phase 3 clinical trial. Isotopen Technologien München AG (ITM), a specialized radiopharmaceutical company, today announced the enrolment of the first patient recruited in Europe for the COMPETE phase III clinical trial at the University Hospital Marburg, Germany. The CEO of ITM said “This marks the starting point of COMPETE in Europe, whereby we expect a rapid increase in the number of recruits.” I actually met these guys at ENETS 2018 – sounds great.

What is the COMPETE trial?

COMPETE is led as an international pivotal multi-center phase III clinical trial evaluating the efficacy and safety of (no-carrier-added) n.c.a.177Lu-Edotreotide (Solucin®) and the trial is comparing it to Everolimus (Afinitor). The trial runs until Dec 2020. The enrolment requires patients with inoperable, progressive, somatostatin-receptor positive neuroendocrine tumors of gastroenteric or pancreatic origin (GEP-NET). The primary endpoint is progression-free survival (PFS). The study will be conducted predominantly in Europe, North America, South Africa and Australia (ITM is waiting on FDA clearance to include North American locations in the trial). The first patient to be enrolled and treated was in Australia. The clinical trial document (see references below) indicates its for non-functional GI tumours but for non-functional and functional pNETs. The list of locations can also be found in the clinical trial document. The usual inclusion/exclusion rules apply but the most notable would appear to be an exclusion for those with prior exposure to any PRRT or mTor inhibitor such as Everolimus (Afinitor).

What is 177Lu-Edotreotide (Solucin®) ?

The compound under investigation, Solucin®, is known as a Targeted Radionuclide Therapy (TRT) agent, which consists of the targeting molecule Edotreotide, an octreotide-derived somatostatin analogue and ITM´s EndolucinBeta® (no-carrier-added Lutetium-177). EndolucinBeta® is a synthetic, low-energy beta-emitting isotope of Lutetium, a recently EMA approved pharmaceutical precursor. The radiopharmaceutical Solucin® is administered as an intravenous infusion, specifically targeting and destroying the tumor cells with ionizing radiation. Solucin® received an Orphan Designation (EMA/OD/196/13) for the treatment of GEP-NET, based on early clinical experience, which has demonstrated a substantial clinical benefit with increased PFS and quality of life.

From ITM’s website … “Edotreotide contains DOTA which functions as a chelator for radioisotopes and TOC, a synthetic Somatostatin receptor ligand” (chelator and ligand are just fancy names for ‘bonding’ or ‘binding’). “The compound Edotreotide binds with high affinity Somatostatin receptors and retains both its receptor binding properties and its physiological function when labeled with 177Lu. Somatostatin receptors are predominantly overexpressed by neuroendocrine tumors. 177Lu-Edotreotide, upon binding to Somastotatin receptors in vivo is internalized and retained by tumor cells.”

“Compared to 90Y-Edotreotide, 177Lu-Edotreotide Targeted Radionuclide Therapy in NET was found to be less haematotoxic and associated with a longer median overall survival. That was highly significant for patients with low tumor uptake as well as for patients with extra hepatic and solitary metastases. In a retrospective Phase II trial 177Lu-Edotreotide showed a low uptake/dose delivered to normal organs and very high tumor-to-kidney ratio.”

Other Spin offs from ITM

Interestingly the company is also working on a ‘theranostic pair’ for imaging and treating bone metastases – see graphic below. It does not say whether this includes NET bone metastases but I don’t see why not given the connection with Solucin. However, please note this is some years away from fruition.