ASCO 2017 – Let’s talk about NETs #ASCO17

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.

68Ga-DOTATATE PET/CT to predict response to peptide receptor radionuclide therapy (PRRT) in neuroendocrine tumours (NETs).  

Conclusions: Objective response to PRRT defines a subset of patients with markedly improved PFS. SUVave 21.6 defines a threshold below which patients have a poor response to PRRT. This threshold should be taken forward into prospective study.

Check out my recent blog discussing ‘Theranostic pairing” – click here

Rohini Sharma 4093
A multicohort phase II study of durvalumab plus tremelimumab for the treatment of patients (PTS) with advanced neuroendocrine neoplasms (NENs) of gastroenteropancreatic (GEP) or lung origin (the DUNE trial-GETNE1601-).

News of a trial – no conclusion included.  However, see trial data NCT03095274

Ignacio Matos Garcia TPS4146
Association between duration of somatostatin analogs (SSAs) use and quality of life in patients with carcinoid syndrome in the United States based on the FACT-G instrument.

Conclusions: The duration of SSA use was positively associated with QoL benefit among CS patients. This may be explained by long-term effectiveness of SSAs or selection bias favoring patients with more indolent disease. Future studies will be needed to distinguish between these possibilities.

Daniel M. Halperin e15693
Association of weight change with telotristat ethyl in the treatment of carcinoid syndrome.

Conclusions: The incidence of weight gain was dose-related on TE and was greater than that on pbo. It was possibly related to a reduction in diarrhea severity, and it may be a relevant aspect of TE efficacy among patients with functioning metastatic NETs. Clinical trial information: NCT01677910

See my blog post Telotristat Ethyl

Martin O Weickert e15692
Blood measurements of neuroendocrine tumor (NET) transcripts and gene cluster analysis to predict efficacy of peptide radioreceptor therapy.

Conclusions: A pre-PRRT analysis of circulating NET genes, the predictive quotient index comprising “omic” analysis and grading, is validated to predict the efficacy of PRRT therapy in GEP and lung NETs.

Lisa Bodei 4091
Capecitabine and temozolomide (CAPTEM) in neuroendocrine tumor of unknown primary.

Conclusions: CAPTEM shows activity in neuroendocrine tumor of unknown primary. Currently FDA approved treatment options for grade I and grade II GI NETs includes somatostatin analogs and everolimus. Both of which are cytostatic and of limited use in case of visceral crisis or bulky disease where disease shrinkage is required. CAPTEM should be considered for grade II NETS of unknown primary.

Aman Chauhan e15691
Clinical and epidemiological features in 495 gastroenteropancreatic neuroendocrine patients in Mexico.

Conclusions: This is the first multi-center study in Mexico. Which reflects the clinical characteristics of the NET_GET. The results differ in their epidemiology from that reported in other countries. However, the clinical and therapeutic results are very similar.

Rafael Medrano Guzman e15687
Effect of lanreotide depot (LAN) on 5-hydroxyindoleacetic acid (5HIAA) and chromogranin A (CgA) in gastroenteropancreatic neuroendocrine (GEP NET) tumors: Correlation with tumor response and progression-free survival (PFS) from the phase III CLARINET study.

Conclusions: These data suggest that serotonin is secreted by nonfunctioning tumors, but does not reach the threshold required for clinical carcinoid symptoms. Monitoring 5HIAA and CgA may be useful during LAN treatment of nonfunctional GEP NETs. Clinical trial information: NCT00353496

Alexandria T. Phan 4095
Final progression-free survival (PFS) analyses for lanreotide autogel/depot 120 mg in metastatic enteropancreatic neuroendocrine tumors (NETs): The CLARINET extension study.

Conclusions: CLARINET OLE suggests sustained antitumor effects with LAN 120 mg in enteropancreatic NETs irrespective of tumor origin, and suggests benefits with LAN as early treatment. Clinical trial information: NCT00842348

Edward M. Wolin 4089
Lanreotide depot (LAN) for symptomatic control of carcinoid syndrome (CS) in neuroendocrine tumor (NET) patients previously responsive to octreotide (OCT): Subanalysis of patient-reported symptoms from the phase III elect study.

Conclusions: Pts showed improvement in CS symptoms of flushing and diarrhea and reduction in 5HIAA levels with LAN treatment, indicating efficacy of LAN regardless of prior OCT use. Transition from OCT to LAN was well tolerated among prior OCT pts in ELECT. Clinical trial information: NCT00774930

Check out my blog post about Lanreotide and Lanreotide vs Octreotide

George A. Fisher 4088
Molecular classification of neuroendocrine tumors: Clinical experience with the 92-gene assay in >24,000 cases.

Conclusions: These findings highlight the utility of molecular classification to identify distinct NET tumor types/subtypes to improve diagnostic precision and treatment decision-making. In addition, significant differences in the distribution of molecular diagnoses of NET subtype by age and gender were identified.

Andrew Eugene Hendifar e15700
Multi-omic molecular profiling of pancreatic neuroendocrine tumors.

Conclusions: In PNETS, multi-omic profiling through the KYT program identified targetable alterations in several key pathways. Outcome data will be explored.

Rishi Patel e15685
Outcomes of peptide receptor radionuclide therapy (PRRT) in metastatic grade 3 neuroendocrine tumors (NETs).

Conclusions: In this poor prognosis G3 NET cohort of whom 77% had received prior chemotherapy, a median OS of 18 months from start of PRRT is encouraging and warrants further study. PRRT is a promising treatment option for patients with G3 NET with high somatostatin-receptor expression selected by SSRI.

Mei Sim Lung e15694
Periprocedural management of patients undergoing liver resection or liver-directed therapy for neuroendocrine tumor metastases.

Conclusions: Occurrence of documented carcinoid crisis was low in this high-risk population. However, a significant proportion of patients developed hemodynamic instability, suggesting that carcinoid crisis is a spectrum diagnosis and may be clinically under-recognized. Use of octreotide was not associated with risk of carcinoid crisis or hemodynamic instability; however, this analysis was limited by our modest sample size at a single institution. There remains a need to establish an objective definition of carcinoid crisis and to inform standardization of periprocedural use of octreotide for at-risk patients.

See my blog on “Carcinoid Crisis” 

Daniel Kwon e15689
Predictive factors of carcinoid syndrome among patients with gastrointestinal neuroendocrine tumors (GI NETs).

Conclusions: By assessing patients with GI NET from two independent US claim databases, this study suggested that patients diagnosed with CS were 2-3 times more likely to be diagnosed with liver disorder, enlargement of lymph nodes, or abdominal mass, than those without CS during the one year prior to CS diagnosis. Future studies using patient medical charts are warranted to validate and interpret the findings. These findings, when validated, may aid physicians to diagnose CS patients earlier.

Beilei Cai e15690
Predictors of outcome in patients treated with peptide radio-labelled receptor target therapy (PRRT).

Conclusions: Radiological progression within 12 months of completion of PRRT is associated with a worse outcome in terms of OS. Patients with greater liver involvement and highest CgA levels are more likely to progress within 12 months of treatment completion. Earlier treatment with PRRT in patients with radiological progression not meeting RECIST criteria may need to be considered. There may be a greater survival benefit if PRRT is given prior to the development of large volume disease.

Dalvinder Mandair 4090
Pre-existing symptoms, resource utilization, and healthcare costs prior to diagnosis of neuroendocrine tumors: A SEER-Medicare database study.

Conclusions: To the best of our knowledge, this is the first population-based study to examine potentially relevant pre-existing symptoms, resource utilization and healthcare costs before NET diagnosis. NET patients were more likely to have certain conditions and incurred higher resource utilizations and costs in the year preceding diagnosis of NET.

Chan Shen 4092
Prevalence of co-morbidities in elderly patients with distant stage neuroendocrine tumors.

Conclusions: This population-based study showed that elderly NET pts have significantly different prevalence of co-morbidities compared to non-cancer controls. The impact of these conditions on survival and therapeutic decisions is being evaluated.

A. Dasari e15699
Prognostic factors influencing survival in small bowel neuroendocrine tumors with liver metastasis.

Conclusions: In patients with SBNET with liver metastasis, higher tumor grade and post-operative chemotherapy increased risk of death. However, resection of the primary tumor along with liver metastasis improves the 5-year OS with complete cytoreduction providing the most benefit.

Nicholas Manguso e15688
Role of 92 gene cancer classifier assay in neuroendocrine tumor of unknown primary.

Role of 92 gene cancer classifier assay in neuroendocrine tumor of unknown primary. | 2017 ASCO Annual Meeting Abstracts

Conclusions: Tissue type ID was able to identify a primary site in NETs of unknown primary in majority (94.7%) of cases. The result had direct implication in management of patients with regards to FDA approved treatment options in 13/38 patients (pNETs, merkel cell and pheochromocytoma).

Aman Chauhan e15696
Surgery in combination with peptide receptor radionuclide therapy is effective in metastatic neuroendocrine tumors and is definable by blood gene transcript analysis.

Conclusions: Radical loco-regional surgery for primary tumours combined with PRRT provides a novel, highly efficacious approach in metastasised NET. The NETest accurately measures the effectiveness of treatment.

Andreja Frilling e15697
The impact of pathologic differentiation (well/ poorly) and the degree of Ki-67 index in patients with metastatic WHO grade 3 GEP-NECs.

Conclusions: Grade 3 GEP-NECs could be morphologically classified into well and poorly differentiated NETs. Additionally, among grade 3 GEP-NECs, there was a significant difference in ranges of Ki67 index between well and poorly differentiated NECs. Higher levels ( > 60%) of Ki67 index might be a predictive marker for efficacy of EP as a standard regimen in grade 3 GEP-NECs.

Check out my blog post on Grading which has incorporated latest thinking in revised grade 3 classification

Seung Tae Kim e15686
Theranostic trial of well differentiated neuroendocrine tumors (NETs) with somatostatin antagonists 68Ga-OPS202 and 177Lu-OPS201.

Conclusions: In this trial of heavily treated NETs, preliminary data are promising for the use of 68Ga-OPS202/177Lu-OPS201 as a theranostic combination for imaging and therapy. Additional studies are planned to determine an optimal therapeutic dose and schedule. Clinical trial information: NCT02609737

Diane Lauren Reidy 4094
Use of antiresorptive therapy (ART) and skeletal-related events (SREs) in patients with bone metastases of neuroendocrine neoplasms (NEN).

Conclusions: SREs in NEN patients with BM were not uncommon, especially in patients with grade 3 NEN and osteolytic metastases. Application of ART did not significantly alter median OS or TTSRE, no subgroup with a benefit of ART could be identified. The use of ART in NEN should be questioned and evaluated prospectively.

Leonidas Apostolidis 4096
Targeted radiopeptide therapy Re188-P2045 to treat neuroendocrine lung cancer

Conclusions: Rhenium Re 188 P2045, a radiolabeled somatostatin analog, may be used to both identify and treat lung cancer tumors. The ability to image and dose patients with the same targeted molecule enables a personalized medicine approach and this highly targeted patient therapy may significantly improve treatment of tumors that over express somatostatin receptor.

Christopher Peter Adams, Wasif M. Saif e20016

Thanks for reading

Ronny
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Lutetium Lu 177 dotatate (Lutathera®) – PRRT

prrt update

Background

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.

Short PRRT Primer

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’. 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.

THERANOSTICS

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.

Hasn’t the therapy has been in use for some time?

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.

What about Grade 3 (High Grade) Neoplasms?  

The main treatment for Grade 3 is chemotherapy, particularly poorly differentiated.  PRRT tends to work better with efficient somatostatin receptors (i.e. somatostatin receptor-positive tumors).  The European approval wording only covers Grades 1 and 2. The US FDA approval indicates “somatostatin receptor-positive tumors”.  It’s also worth noting that with Grade 3, are more likely to exist in Grade 3 well differentiated NETs, particularly in the lower Ki-67 readings. However, there’s an interesting study from Australia which might be useful to read – check out the abstract here (note the full version is not available free).

What about Pheochromoctyoma/Paraganglioma?

There’s actually still a trial for Pheochromocytoma/Paraganglioma (Pheo/Para).  It is known that Pheo/Para can have somatostatin receptor tumors so a useful trial. The aim of the trial is to assess the safety and tolerability.  You can read about the trial here.

global icon
Where can I get PRRT?

Regional Updates

The aim of this section is to update on a regional basis in order to inform an international community of followers and readers.

This 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.

UNITED KINGDOM

On 29 August 2018. National Institute for Health Care Excellence (NICE) England has formally published that Lutetium (177Lu) oxodotreotide, within its marketing authorisation, is an option for treating unresectable or metastatic, progressive, well-differentiated (grade 1 or grade 2), somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumours (NETs) in adults.  CLICK HERE to read the approval.  Currently available in London and Liverpool but there is talk of Newcastle going live soon. I await the rollout of PRRT – watch this space for a table listing. 

On 9 July 2018. The Scottish Medicines Consortium (NICE equivalent) has approved lutetium 177Lu (Lutathera) for patients in NHS Scotland. Good news for Scotland once their hospitals have the capability to deliver. Scottish patients would then not need to travel to England for the NHS Scotland funded treatment. Read more here.

It is funded in Wales and Northern Ireland but is currently administered in England with inter NHS budget transfers.

USA

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.

The extended access program (trial) is no longer offered 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 13 Sep 2018)

STATE LOCATION Due in Service? CONTACT DETAILS
Arizona Banner Now Dr Boris Naraev
California UCSF Medical Center Mission Bay San Francisco Now tbc
California – Antioch Kaiser Permanente Antioch Medical Center Now tbc
California Cedars Sinai Medical Center LA now tbc
California Stanford Medical Center Now tbc
California Kaiser Permanente Los Angeles Medical Center Now tbc
California Hoag Hospital Newport Beach Now tbc
California UCLA Health Now tbc
California Kaiser Santa Clara Medical Center Now tbc
California City of Hope LA Now tbc
California coming soon
Connecticut Yale New Haven Medical Center Now tbc
Colorado Rocky Mountain Cancer Center Denver Now Dr Eric Liu
Colorado University of Colorado UC Health Denver Now tbc
Florida Moffat Tampa Now Dr Strosberg
Florida University of Miami Now tbc
Florida Mayo Jacksonville Now tbc
Florida Winter Park, Florida Radiation Oncology Orlando Now tbc
Florida Orlando Health Now tbc
Georgia CCTA Newnan, Atlanta Now Dr. Phan
Hawaii Queen’s Medical Center Now Dr. Marc Coel
Illinois Rush University Chicago Now Xavier M. Keutgen, MD
Illinois Northwestern Chicago now tbc
Illinois The University of Chicago Medicine now tbc
Illinois Loyola University Medical Center Maywood now tbc
Indiana Indiana University Health now tbc
Iowa University of Iowa now Dr T O’Dorisio
Kansas University of Kansas Medical Center Fairway now tbc
Kentucky University of Kentucky, Markey Cancer Center now tbc
Louisiana Ochsner now tbc
Maryland John Hopkins Baltimore now tbc
Massachusetts Dana Farber Boston Now tbc
Massachusetts Massachusetts General Hospital Now tbc
Michigan Ann Arbor Now tbc
Michigan Detroit – Karmanos Cancer Center Now tbc
Minnesota Mayo Rochester 26 Apr 2018 Dr. Thor Halfdanarson
Minnesota University of Minnesota Health Now tbc
Missouri Sara Canon Cancer Center Kansas City Now tbc
Missouri Siteman Cancer Center St. Louis Now tbc
Missouri Barnes Jewish Hospital St. Louis Now tbc
Nebraska CHI Bergan Now Dr Samuel Mehr
Nebraska Nebraska Cancer Specialists Omaha Now Dr Samuel Mehr
New York Lenox Hill NYC Now tbc
New York Sloan Kettering Now tbc
New York Roswell Park Buffalo Now Dr Iyer
New York Mount Sinai Now tbc
New York NYU Langone Now tbc
North Carolina Dukes Durham Now tbc
Ohio The James, Columbus Now Dr Shah
Oregon Oregon Health & Science University (OHSU) Now tbc
Pennsylvania UPMC Pittsburgh Now tbc
Pennsylvania Fox Chase Philadelphia Now Dr Paul Engstrom
Rhode Island Rhode Island Hospital Providence Now Dr Paul Engstrom
Tennessee Vanderbilt Nashville Apr 2018 tbc
Texas MD Anderson Houston Summer 2018 tbc
Texas Excel Diagnostics Houston Now tbc
Texas CHI St Lukes Houston Now tbc
Utah Huntsman Cancer Institute, Salt Lake City 10 May tbc
Virginia Carilion Clinic Roanoke now tbc
Washington (State) Virginia Mason Seattle Now Dr. Hagen Kennecke
Washington (DC) VMedStar Georgetown University Hospital Now tbc
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
 Wisconsin  Froedtert Milwaukee  Now  Dr Thomas

Canada

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 affiliated 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 please note 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 Clinicclick here

Germany – Zentralklinik Bade Berkaclick here

Denmark – ‘Rigshospitalet’ since 2009. They have treated around 250 patients- and given 800 treatments.

I’d be interested to hear from countries in Europe with their full list of centres or a link to it.

Australia

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.

New Zealand

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.

Africa

South Africa:

Middle East, Asia and the Far East

Turkey – Istanbul, Dr.Levent Kabasakal.

IsraelHadassah Medical Center, Jerusalem – click to read

Lebanon – The American Hospital of Beirut – Dr Ali Shamseddine “We have started using Lu-177 here in Lebanon. So far, we have treated 3 patients, with good response. The operational cost is much less than in Europe”.  

Ali Shamseddine, MD, CHB Professor and Head of Division as04@aub.edu.lb

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.

Malaysia

Sunway medical Centre

Beacon hospital

Pakistan – check out this article – click here

Singapore – Singapore General Hospital and National University Hospital.  

Philippines – St. Luke’s Medical Center, Global City, Taguig, Metro Manila.

South America

Chile – Instituto Oncológico Fundación Arturo López Pérez, Santiago

——————————————–

What’s next for NETs PRRT?

  • two radiopeptides together;
  • radiopeptides in conjunction with other chemotherapies (check out my article PRCRT);
  • repeated administrations of the radiotherapies;
  • other radionuclide-peptide combinations.
  • increasing the number of indications for this therapy, including other disease targets;

See this great summary from NET Research Foundtion of what might be next plus basic facts about PRRT – click here

Thanks for reading

Ronny

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

patients included

NETwork with Ronny © – Newsletter April 2017

Hi NETworkers!

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!).

Highlights

There are two main highlights for April which stood out for me:

  1. The publication of my WEGO Health Award PODCAST.  This was a radio interview prior to the announcement that I had won the WEGO ‘Best in Show Community’ award.  It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course).  If you missed it, you can listen to it by clicking here.
  2. The announcement of new USA database figures for incidence and prevalence of NETs. This confirms it is now mathematically impossible for NETs not to be a rare disease in 2017.  I’m not in any way surprised by the authoritative data provided and I’ve been forecasting this for 2 years.  You can read all about the conversion of NETs from rare to less common by clicking here. I truly believe a new and more compelling awareness paradigm must now be adopted by the community.

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 

New (or significantly updated) 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 Apr 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.  Currently 192 subscribers – up 20% 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 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.  The trailer for the documentary which will feature a NET Patient can be found by clicking here.
  • 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

Social Media and Stats

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.

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

  • Facebook 4522.  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’)
  • Twitter3836 / 2955 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 275,904
  • Blog with most views: 8261 – The Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 Jan 2017.  Why the spike? ….. The Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one month: 19,303 in Apr 2017.  Why the spike? …. too many to list – see above!

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!

Thanks for reading

Ronny

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

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

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