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Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping NET Patients
ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 ‘extracts’ submitted for review and display. This is fairly complex stuff but much of it will be familiar to many. I’ve filtered and extracted all the Neuroendocrine stuff into one list providing you with an easy to peruse table of contents, complete with relevant linkages if you need to read more. For many the extract title and conclusion will be sufficiently educational or at least prompt you to click the link to investigate further. Remember, these are extracts so do not contain all the details of the research or study. However, some are linked to bigger trials and linkages are shown where relevant. I’ve also linked to some of my blog posts to add context and detail.
I’m hoping to capture any presentations or other output from the meeting which appears to be relevant and this will follow after the meeting. I will also be actively tweeting any output from the live event (for many cancers, not just NETs).
There’s something for everyone here – I hope it’s useful.
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There’s a lot of questions doing the rounds on forums and messages about the approval of Lutathera (PRRT) in USA, Europe and other places. This is not a place just for one particular country, I want a place to review what is happening globally given my following. In many countries, however, I’m dependent on feedback from patients in those countries. Please note this is not intended to be a 100% complete breakdown on everything about PRRT or PRRT centres – it’s a summary. It should be clear from below but please bear that in mind when reading.
What is PRRT?
For those who are still not sure what it’s all about. This is a non-surgical treatment which is normally administered intravenously. It’s based on the use of somatostatin receptors to attract a ‘radiopeptide’. The radiopeptide is a combination of a somatostatin analogue and a radioactive material. As we already know, somatostatin analogues (i.e. Lanreotide/Octreotide) are a NET cell targeting drug, so when combined radioactivity, it binds with the NET cells and delivers a high dose of targeted radiation to the cancer while preserving healthy tissue. In general, patients tend to receive up to 4 sessions spaced apart by at least 2 months.
PRRT will not work on all NETs and not everyone will suited to this treatment. In general, for this treatment to be more successful, you must have somatostatin receptors in your tumors. Success rates are not 100% – it should not be considered a cure or ‘magic bullet’ (…yet). However, the results are said to be pretty good. The NETTER-1 trial data which has led to formal approval in Europe, USA and other areas, can be found here.
Understanding the terminology is half the battle in understanding the latest developments. I’ve included Ga-68 PET scans within this section (or in more general terms Somatostatin Receptor PET (SSTR PET)) as the term ‘Theranostics‘ is becoming a commonly used theme. Theranostics is a joining of the words diagnostics and therapy.
LUTATHERA is the radionuclide ‘mix’ for use in Peptide Radio Therapy Treatment (PRRT). You may also see this drug called ‘Lutetium’ or ‘Lu-177 dotatate’, or just ‘Lu-177’ on its own. Yttrium 90 (Y-90) is a radionuclide also used in PRRT.
NETSPOT (USA) or SOMAKIT TOC (Europe) is not PRRT but it is the commercial names for the radiopeptide used in Gallium 68 (Ga-68) PET diagnostic scans.
Together they form a ‘theranostic pair’. Theranostics is apt as together (NETSPOT / SOMAKIT TOC and Lutathera), both target NETs expressing the same somatostatin receptor, with Lutathera intended to kill tumor cells by emitting a different kind of low-energy, short-range radiation than that of the diagnostic version.
Moreover, thanks to the theranostic approach that nuclear medicine allows, Novartis/AAA’s NETSPOT/SomaKit TOC products will be able to determine when Lutathera is the appropriate treatment.
Read more about Theranostics by clicking here.
LATEST HEADLINE – Next approval due – UK.
Latest news from UK. 20 Feb 2018. NICE confirm PRRT will be included in the technology appraisal committee meeting on 11 April 2018. They don’t expect to publish the outcome until 25th July 2018 at the latest. CLICK HERE
Timeline of interest in the UK decision
ALL – 7 Dec 2017. Novartis and Advanced Accelerator Applications (AAA) Announced that Novartis is buying AAA and the process has been completed. AAA is now a Novartis Company. Read here This will not have any effect on approval timelines.
EUROPE – 29 Sep 2017. AAA Announced that the European Commission (EC) has approved the use of Lutetium Lu 177 Dotatate (Lutathera®). Despite the treatment being used for over 10 years, this is apparently the first ever approval of the therapy. EU constituent countries are now free to fund and implement services. In the UK, now awaiting action by NICE (see announcement below 3rd and 11th Aug). Read here
UK – 11 Aug 2017. AAA responds to UK drug appraiser National Institute for Health and Care Excellence (NICE) negative recommendation. Read here
UK – 3 Aug 2017. Currently, NICE (the UK equivalent of FDA) are not recommending Lu-177 Lutathera based on cost. This is only a draft recommendation and another announcement is expected end Sep 2017. More to follow when known. This is a blow for patients in England. Read here
UK – 2015. PRRT was removed from the Cancer Drugs Fund by NHS England
Of course, this therapy has been in use in Europe and some other places for some time but to be honest, they have been on a limited scale and never formally approved by national drug agencies. Despite its extensive use, the EU approval in 2017 was actually the very first approval of PRRT anywhere in the world. For example, in UK, it was used for some time for those in need but was removed from routine availability through a ‘slush fund’ formally known as the Cancer Drugs Fund – to cut a long story short, the funding source was cut off, although there are still ways of obtaining the treatment pending formal acceptance by the NHS (certain criteria apply).
In the meantime, I constantly see stories of patients travelling to Switzerland, Germany, Netherlands, Sweden, Great Britain and others; mostly at their own cost. However, it does indicate one thing, there is a huge unmet need in that many patients do not have access to the best treatments in their own country. I see this daily through many private messages.
The next section of this article will cover each region, indicating where PRRT can be obtained (as far as I know). It is not designed to indicate whether this is through public or private facilities (this will depend to too many factors beyond the reach of this article). Please note this is not intended to be a 100% complete breakdown on everything single PRRT centre – it’s a summary. It should be clear from below but please bear that in mind when reading.
The aim of this section is to update on a regional basis in order to inform an international community of followers and readers.
In UK, despite the EC approval on 29 Sep 2017, NICE (drug approvals agency covering England, 90% of UK population) are currently not recommending PRRT (Lu-177) due to what looks to me like cost grounds. One theory is that this is a metaphor for price negotiation between NHS England and AAA. This is a particularly controversial issue for UK (England in particular) as the drug was removed from routine use (Cancer Drugs Fund) in 2015. Why wait in England? There are ways to get access to PRRT via different funding sources and there are two location covering this in London and Liverpool. Ask your specialist because this possibility is unfortunately not very well publicised. PRRT is funded in Scotland, Wales and Northern Ireland. The NICE approvals process only covers England. See headline update above.
PRRT was approved in USA on 26 Jan 2018. The approval is for the treatment of somatostatin receptor positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors in adults. CLICK HERE – (full guidance will be updated when received)
The extended access program is on hold but these locations should be ahead of the game in terms of provision, notwithstanding insurance and provision of sufficient nuclear material.
In the meantime, known USA sites offering routine “live site” insurance based PRRT treatment are as follows – please note information has been gleaned from US patients due to no other consolidated source of this information being readily available. It’s possible some patients got mixed up between trial locations and live locations so let me know of any omissions or additions/corrections – thanks in advance.
DRAFT – NOT YET COMPLETE – (as at 10 May 2018)
|STATE||LOCATION||Due in Service?||CONTACT DETAILS|
|Arizona||Banner||Now||Dr Boris Naraev|
|California||Palo Alto VA||Summer 2018||tbc|
|California||Stanford Medical Center||June 2018||tbc|
|California||Kaiser San Francisco||Summer 2018`||tbc|
|Colorado||Rocky Mountain Cancer Center Denver||Now||Dr Eric Liu|
|Florida||Moffat Tampa||Now||Dr Strosberg|
|Florida||Miami Cancer Center||Summer 2018||tbc|
|Georgia||Emory Atlanta||Estimated May/June 2018||tbc|
|Illinois||Rush University Chicago||Now||Xavier M. Keutgen, MD|
|Massachusetts||Dana Farber Boston||Now||tbc|
|Minnesota||Mayo Rochester||26 Apr 2018||Dr. Thor Halfdanarson|
|Missouri||Siteman Cancer Center St. Louis||Now||tbc|
|Nebraska||CHI Bergan||Now||Dr Samuel Mehr|
|New York||Lenox Hill NYC||Now||tbc|
|Ohio||The James, Columbus||Now||Dr Shah|
|Oregon||Kaiser Portland||Estimated Aug 2018||tbc|
|Pennsylvania||Fox Chase Philadelphia||Now||Dr Paul Engstrom|
|Tennessee||Vanderbilt Nashville||Apr 2018||tbc|
|Texas||MD Anderson Houston||Summer 2018||tbc|
|Texas||Excel Diagnostics Houston||Now||tbc|
|Washington||Virginia Mason Seattle||Now||Dr. Hagen Kennecke|
|Wisconsin||UW Health Madison, Carbone Cancer Center||Now||Noelle K. LoConte, MD Specialty: Medical Oncology Primary Location: UW Carbone Cancer Center (608) 265-1700 (800) 323-8942|
PRRT is only available at a few cancer centres in Canada. It can only be used with special approval from Health Canada or by taking part in a clinical trial
Europe (EU associated countries)
The European Medicines Agency (EMA) “market authorisation” received a positive indication on 20th July followed by EC approval on 29 Sep 2017. The positive indication reads “Lutathera is indicated for the treatment of unresectable or metastatic, progressive, well differentiated (G1 and G2), somatostatin receptor positive gastroenteropancreatic neuroendocrine tumours (GEP NETs) in adults”. Of Course, the decision to fund the drug will be with national approval organisations. Whilst I’m sure there are many more, these well-known centres have been making PRRT available for some years (but there are others):
Netherlands – Rotterdam Treatment Centre – click here
Sweden – Department of Endocrine Oncology Uppsala University Hospital – click here
Switzerland – University Hospital Basel, Radiology & Nuclear Medicine Clinic – click here
Germany – Zentralklinik Bade Berka – click here
UK – Royal Free Hospital – click here
I’d be interested to hear from countries in Europe with their list of centres or a link to it.
Australia seems to be ahead of the game or that is what I sense when I read output from there. There’s a good section on the Australian effort – click here.
These guys have had to fight to get some progress on the provision of PRRT. Currently New Zealanders have to go to Melbourne Australia for treatment – almost 50 New Zealanders with NETs are currently raising tens of thousands of dollars to pay for treatment in Australia because the life-prolonging treatment isn’t available locally. But this could change in 2018. Unicorn Foundation New Zealand announced that Pharmac, the New Zealand government agency that decides which pharmaceuticals, have said that PRRT will be funded for patients with medium priority for the treatment of unresectable or metastatic, well-differentiated NETs (irrespective of primary site) that express somatostatin receptors.
Middle East, Asia and the Far East
Turkey – Istanbul, Dr.Levent Kabasakal.
India – Mahatma Gandhi Cancer Hospital, Visakhapatnam. Recently started radionuclide therapy. Although only currently available privately, some patients have been sponsored by the companies that they work for. Point of contact is Dr. K. Raghava Kashyap.I’ve been assured by CNETS India that many locations have PRRT capability – contact them direct please.
Pakistan – check out this article – click here
Philippines – St. Luke’s Medical Center, Global City, Taguig, Metro Manila.
What’s next for NETs PRRT?
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Welcome to my sixth ‘Community’ newsletter. This is April 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).
There are two main highlights for April which stood out for me:
April was a slower month in ‘new’ blogging terms due to a number of external projects and a continuing flow of private messages. Not forgetting two weeks of lower back pain (don’t forget, I’m a patient too!).
I don’t have an issue with private contact but please note my disclaimer. However, despite a low number of brand new blogs, I still managed to accumulate the biggest monthly blog views ever. ……..Thank you all so much ♥
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:
- The trouble with the NET (Part 3) April 27, 2017. Fed up of those ‘miracle cures’ and dodgy headlines?
- Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor April 25, 2017. Really good viewing figures and feedback received on this one.
- I’m now a poet 🙂 check out my “Ode to Lanreotide”
- New NET Cancer Grades to be introduced. Check out this updated post with advance notice of what’s coming.
- Poker Face or Cancer Card. Some of the challenges facing life with incurable cancer
- Don’t believe the hype – 10 Neuroendocrine Cancer Myths debunked April 6, 2017. Really good viewing figures and feedback received on this one. Fed up of reading things which you know are wrong?
- There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient April 4, 2017. There isn’t!
- Man versus mountain. I set myself a physical challenge on April 2, 2017 by walking up the biggest hill in southern UK. ‘Brain Medicine’ for me!
- NETwork with Ronny © – Newsletter March 2017 April 1, 2017. ICYMI
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.
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
Blog Milestone. In Apr, I tipped over 275,000 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.
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
Where did Apr 2017 Blog views come from? – Top 11 countries: Large increase from Germany.
For interest. the 10 Ten Facebook followers by Country – Germany now appears!
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 April. Onwards and upwards!
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