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This is an excellent and positive video based overview of where we are with the Management of NETs. This is a presentation from a NET Specialist (who some of you may know) presenting to a “GI Malignancies” conference. This is therefore not only awareness of NETs, it’s also some good education for non NET GI experts who may only know the very basics. Useful for patients too! I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles.
The classification picture is good as it explains the different facets of NETs and how NETs are classified and categorised in a general way – not seen it done this way before. Slightly out of date as it does not adequately convey the possibility of a well differentiated high grade recently classified by the World Health Organisation – read more here.
Amazingly it is delivered without using the word ‘carcinoid’ other than in reference to syndrome (indicating it can be done and is also being reflected in all my posts for context). Excellent update of all the trials which have introduced treatments in the last decade.
Great update and worth the 30 minutes it takes to watch – you can view it here.
All graphics courtesy of http://www.oncology.com
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In the News.
Whilst we all wait on positive national announcements of PRRT approval in USA and UK, 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.”
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.
1. ITM News Release – click here
2. ITM Website – click here
3. Clinical Trials Document – click here
Thanks for reading
Welcome to Ronny Allan’s Community newsletter for November 2017. A very strong beginning of the month due to massive support for my Halloween themed but very serious and hard-hitting post “Neuroendocrine Tumors – no treats, just tricks“. If you’ve not seen it or commented on it, check it out here on the Facebook site (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so phenomenal; it actually eclipsed my entire NET Cancer Day effort on 10 Nov! I am so grateful to those who made that happen ♥
That said, I was actually pretty quiet on NET Cancer Day. You have to remember that my contribution is mostly social media, that is my strong point and that is where I focus. It’s a great platform in the ‘awareness battlespace’ for many medical conditions. Moreover, it is where we will find new audiences. More and more doctors of all specialities are joining social media on a daily basis – we need them to find out about NETs.
I was quiet for much of November due to a wee bit of exhaustion, coupled with a slight depression that another year of ‘same old’ messages was taking place. Despite this, I still managed to dominate the social media #LetsTalkAboutNETs campaign.
AND ….. I’m now officially ronnyallan.NET (how apt is that!)
If English is not your first language, please check out my language gadget on each page and post of my blog site:
I caught this news in my social media NET
(did you see what I did there?)
- Pheochromocytoma is something I’ve written about before but this video from NET Cancer Day (courtesy of the PheoPara Alliance) is a classic example of how I believe we should do awareness – it’s about real things happening to real people rather than gimmicky BAWSA stuff. If you have not seen this short video, check it out here.
- New Treatments on the horizon – short video from Dr Matthew Kulke with my additional comment – check it our here
- RIP Sunny Susan Anderson, patient legend – check out this link
Blog Site Activity
Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.
|Horrible Hormones – totally revamped post and now a reference article on my site. https://www.facebook.com/NETCancerBlog/posts/968176113320680|
|The 7 Year Itch. Living with NETs! https://ronnyallan.com/2017/11/20/the-7-year-itch/|
|The P Word has a bit of a renaissance period in Nov with many people showing a renewed interest in the subject of palliative care https://ronnyallan.com/2016/11/18/palliative-care-it-might-just-save-your-life/|
|October Newsletter – in case you missed it https://ronnyallan.com/2017/11/01/network-with-ronny-community-newsletter-october-2017/|
|Poker Face or Cancer Card – my second article in Cure Magazine https://www.curetoday.com/community/ronny-allan/2017/10/poker-face-or-cancer-card|
November didn’t seem like a busier month in terms of blogging despite several personal challenges and external projects on the go. Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time. I still managed to break records in November, mainly due follow on support for my Halloween themed post on 31st Oct. Thank you all so much for the support.
Please join my 2018 awareness campaign event here (select ‘Going’)
I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
Please also note I cannot accept telephone or video calls on a one to one basis (please just message me and I will respond). Also, the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
Awareness Activity in November 2017
New Audiences for NET Cancer. From Day 1, I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. I’m doing this!
- Article features.
- Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs. In Nov, I tweeted 250 times on my personal account which led to 152,000 views. I was mentioned 160 times by other tweeters, 3322 people looked at my profile and I gained 48 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
- Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email. Currently 387 subscribers – up 13 on last month.
- WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation!
- Macmillan Cancer Support. I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum. In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities. This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation. They published an article recognising NET Cancer Day (might be the first time they ever did) – check it out here:
On 16 November, I spoke for around 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig! Post to follow when I have the official photos.
Writing and other types of Engagement (external)
Watch this space as I’m working on quite a few projects concurrently.
Social Media and Stats
Blog Milestone. In November, I accelerated past 430,000 views! Thank you all so much ♥ Keep sharing! On track for half a million by end of February 2018.
Facebook Milestone. I would love to achieve 6000 followers by the end of 2017 but that is now an almost impossible challenge without your direct involvement! The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.
Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)
These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)
I’m expanding into Instagram to see how that goes. I’ve amassed over 230 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! You can follow me here: Click here to go to my Instagram page
Community Statistics (the measurement of my efforts on your behalf)
- Facebook – 5466. 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 – 4262 / 3315 Follow me here @RonnyAllan1 / @NETCancerBlog
- Total Blog Views: 430,753
- Blog with most views: 14,004 – 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: 7517 in July 2017.
- Most blog views in one month: 25912 in October 2017.
WOW! – that’s an amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments (and private messages) give me inspiration (or at least a chance to explain further) and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in November. Onwards and upwards!
Thanks for reading