Translate
Subscribe to Blog via Email
Ronny Allan
Short PRRT Primer
What is Peptide Receptor Radionuclide Therapy (PRRT)?
What is PRRT? PRRT stands for Peptide Receptor Radionuclide Therapy, an FDA-approved therapy used for systemic treatment of neuroendocrine tumors.
Peptide refers to the small molecule for this therapy. The Peptide used (DOTATATE or DOTATOC or DOTANOC) is very similar to Somatostatin, a hormone which binds to receptors found on neuroendocrine tumors.
Receptor refers to a specific target on neuroendocrine tumor cells that the peptide attaches to. After the peptide joins with a Receptor, it becomes attached and enters the targeted tumor cell.
Radionuclide refers to radioactive atom that is attached to the peptide. As the peptide enters the cell, it brings the Radionuclide into the tumor cell. The radionuclide (e.g. lutetium-177), then decays and emits radiation within the tumor cell.
Therapy refers to the idea that we are using this combination of Peptides, Receptors, and Radionuclides to Treat these targeted tumor cells, improveFor 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 using somatostatin receptors, so when combined with radioactivity, it binds with the NET cells and delivers a high dose of targeted radiation to the cancer while preserving healthy tissue in an attempt to reduce or kill tumours. 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 be suited to this treatment. In general, for this treatment to be more successful, you must have somatostatin receptors in your tumours. Success rates are not 100% – it should not be considered a cure or ‘magic bullet’. However, the results are said to be pretty good in comparison to other therapies. The NETTER-1 trial data which has led to formal approval in Europe, USA and other areas, can be found here.
Who can get LU177 Lutathera?
This is a controversial point, and you need to start with the wording of the various regional/national approvals:
As examples:
Europe (EU 27/28 countries plus Norway, Liechtenstein and Iceland) – The European Medicines Agency (EMA) approval wording is as follows:
“….. the treatment of unresectable or metastatic, progressive, well differentiated (G1 and G2), somatostatin receptor positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs) in adults”.
USA – The FDA approval wording is as follows:
“….. the treatment of somatostatin receptor positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors, in adults”.
These approvals remain controversial because the term GEP-NETs technically excludes lung tumours. That’s not to say tumours outside the GEP-NET area cannot get access, it just makes it more difficult to access due to the approvals. The US approval has a much wider scope given the introduction of a Grade 3 well differentiated NET in the latest classification systems. Access criteria in different countries/healthcare locations may be adapted for specific scenarios to suit limited availability and costs.
There can be authorised use of Lu177 Lutathera and other PRRT variants outside of the normal approvals system, so it might be possible to get access to non GEP-NET tumour types. However, even within GEP-NETs, patient selection is not straightforward. Read more in this guidance document from NANETS/SNMMI. There’s also an interesting Italian study into patient selection and also how to monitor the benefits of this therapy during and after treatment completion – click here.
What about Grade 3 (High Grade) Neoplasms?
The main treatment for Grade 3 is chemotherapy, particularly poorly differentiated types. PRRT tends to work better with efficient somatostatin receptors (i.e. somatostatin receptor-positive tumours). 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, working somatostatin receptors are more likely to exist in Grade 3 well differentiated NETs, particularly in the lower Ki-67 readings (less than 55%). 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).
2019 Updated data for Grade 3 Neuroendocrine Neoplasms:
“Compared to studies evaluating the efficacy of chemotherapy for NEN patients with a Ki-67 index less than or equal to 55 percent, PRRT has a longer overall survival rate–22 months versus 14 months,” the researchers pointed out. “These results suggest that PRRT, rather than chemotherapy, may be a superior first-line therapeutic option in selected patients with a high level of SSTR expression and a Ki-67 index of less than or equal to 55%.” Read more here. This supports the new thinking behind the revised classification of high-grade tumours published in 2017 – read more here
Another European study stated “This large multicenter cohort of patients with GEP NEN G3 treated with PRRT demonstrates promising response rates, disease control rates, PFS and OS as well as toxicity in patients with mainly progressive disease. Based on these results, PRRT may be considered for patients with GEP NEN G3”.
Click here to read.
Merkel Cell Carcinoma. Although not indicated for this type of Neuroendocrine Neoplasm, there is evidence to suggest that this skin Neuroendocrine Carcinoma does express somatostatin receptors. Read more here.
Now read the clinical trial section below
What about tumours not covered by “GEPNETs”?
This trial in USA is recruiting. Despite the use of “tumor” in the title, it is accepting somatostatin receptor positive Neuroendocrine Carcinomas. Click the text below.
What about Pheochromoctyoma/Paraganglioma?
This article discusses the efficacy of PRRT in Pheo/para – click here.
There are actually trials for Pheochromocytoma/Paraganglioma (Pheo/Para). It is known that Pheo/Para can have somatostatin receptor tumours.
1. Study to Evaluate Safety and Dosimetry of Lutathera in Adolescent Patients With GEP-NETs and PPGLs. The objective of this trial is to learn the safety and tolerability of Lu-177-DOTATATE. Also, to see if it improves the length of time it takes for the cancer to return. – read more by clicking here.
2. Study to Evaluate Safety and Dosimetry of Lutathera in Adolescent Patients With GEP-NETs and PPGLs. The objective of this trial is to assess the safety and tolerability. You can read about the trial here.
3. PUTNET trial. See the box above. (….tumours not covered by GEPNETs”)
What about children and adolescents?
Study to Evaluate Safety and Dosimetry of Lutathera in Adolescent Patients With GEP-NETs and PPGLs. The objective of this trial is to learn the safety and tolerability of Lu-177-DOTATATE. Also, to see if it improves the length of time it takes for the cancer to return.
The multicenter trial sponsored by Advanced Accelerator Applications will study the safety and dosage of Lutathera (Lutetium [177Lu] oxodotreotide/dotatate) in patients between 12 to 17 years of age with somatostatin receptor-positive GET-NETs and PPGLs (pheo/para).
read more by clicking here.
What about Carcinoid Syndrome?
Technically, for many people surgery including debulking surgery and/or somatostatin analogues, will help control carcinoid syndrome. However, for some people, breakthrough symptoms till occur
A new study from NET experts in Netherlands, suggests that PRRT with 177Lu-DOTATATE for symptomatic control of refractory Carcinoid Syndrome (i.e. not adequately controlled by somatostatin analogues) is a viable, safe and effective option for patients with stable and recently diagnosed advanced midgut NENs. The study also showed reductions in 5HIAA and I suspect this might be useful to those with very severe effects of carcinoid syndrome with highly elevated 5HIAA.
Read more here.
Peptide receptor radionuclide therapy with 177Lu-DOTATATE for symptomatic control of refractory carcinoid syndrome. Wouter T. Zandee, MD, PhD; Tessa Brabander, MD, PhD; Anela Blaževid, MD; Noémie S. Minczeles, MD; Richard A. Feelders, MD, PhD; Wouter W. de Herder, MD, PhD; Johannes Hofland, MD, PhD. © The Author(s) 2021. Published by Oxford University Press on behalf of the Endocrine Society
July 2021 – New Section – Side Effects of PRRT (Lutathera)
Like many anti-cancer drugs there are side effects. Within the approval system, these are carefully documented – for example, see the Lutathera manufacturer’s website – click as appropriate US Patients, European Patients. I suspect there won’t be much difference in other geographical areas.
In 2021, the output from two small studies was published by the Society of Nuclear Medicine and Molecular Imaging. and Mayo Clinic. Both studies indicated there was a small risk PRRT can lead to bowel obstruction in patients with mesenteric or peritoneal disease, likely by inducing inflammation. IMHO, more studies, bigger studies are needed, as there could have been a higher than average of peeps with mesenteric problems over the period data was collected.
Strosberg JR, Al-Toubah T, Pellè E, Smith J, Haider M, Hutchinson T, Fleming JB, El-Haddad G. Risk of Bowel Obstruction in Patients with Mesenteric or Peritoneal Disease Receiving Peptide Receptor Radionuclide Therapy. J Nucl Med. 2021 Jan;62(1):69-72. doi: 10.2967/jnumed.120.242875. Epub 2020 May 22. PMID: 32444368. “Risk of Bowel Obstruction in Patients with Mesenteric or Peritoneal Disease Receiving Peptide Receptor Radionuclide Therapy – PubMed”
The Moffat report – click here
Are there any Guidelines for PRRT?
Until a few years ago, most PRRT was done via clinical trials and early access programs. However, while national guidelines on how PRRT should be delivered do exist, a generic set of formal guidelines has been developed collaboratively by the North American Neuroendocrine Tumor Society (NANETS) and the Society of Nuclear Medicine and Molecular Imaging (SNMMI). Read these here for further information about Lu-177 PRRT including these topics:
- BACKGROUND
- TREATMENT OVERVIEW
- PATIENT SCREENING
- SOMATOSTATIN ANALOG THERAPY
- TREATMENT LOCATION
- ROOM PREPARATION
- PATIENT PREPARATION
- AMINO ACID SOLUTIONS
- ANTIEMETIC MEDICATIONS
- RADIOPHARMACEUTICAL ADMINISTRATION
- DOSAGE MODIFICATIONS FOR ADVERSE REACTIONS
- PATIENT MONITORING AND POTENTIAL REACTIONS
- RADIATION SAFETY
- DOSIMETRY AND POSTTREATMENT IMAGING
- TOXICITY
- FOLLOW-UP
One of the most FAQs in my patient group is the guidelines for contact following PRRT treatment. People also ask about pets but I have never seen animals mentioned in any guideline document.
The following extract from above is based on USA (but despite that, patients in US hospitals appear to be given a wide range of information.
Note: the above guidelines may differ from country to country and even within countries due to local regulations in force. Always consult your specialist or treatment centre for the guidelines which apply to your treatment.
Interest point. The above guidelines suggest stopping and starting periods for somatostatin analogues when being treated with PRRT. However, while these guidelines remain in place, a new study in Nov 2021 indicates that small intestine NETs may benefit from an injection of somatostatin analogues at the beginning of each cycle. The conclusion is here:
“SSTR recycling is faster in small-intestinal NETs than in liver, spleen and pancreas. This opens the possibility to protect normal tissues during PRRT by administering a single dose of cold peptide hours before peptide receptor radionuclide therapy (PRRT), and most likely additionally improve the availability and uptake of the therapeutic preparation in the tumors.”
Can I have PRRT more than the regulated 4 times?
This is complex and will rely on individual healthcare arrangements in place plus in insurance-based systems, willingness of insurance companies to cover costs. However, there is a recently released study covering some data from what is known as “Salvage PRRT“. Salvage PRRT, defined as a re-challenge with one or more 177Lu-DOTATATE therapy cycles after 4 initial PRRT cycles with initial response. Read more here. I have one lady on my social media sites who has had almost a dozen cycles.
There’s another study coming out of NANETS symposium 2020, where the term “re-treatment” is introduced based on the addition of 2 further cycles (total 6) which concluded that retreatment with Lutathera-based PRRT provided an encouraging median PFS in a relatively refractory setting among patients with advanced NETs and it wasn’t really associated with a worsened safety profile compared with initial PRRT.
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 name 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.
What’s next for NETs and PRRT including Clinical Trials?
Some trials are featured in the “What about …..” sections above.
Read the latest news on the NETTER-2 trial here. This is designed to look at the benefits of using PRRT on Grade 2 and Grade 3 patients as a first-line treatment.
Other associated PRRT trials are in the pipeline, some based on Lutathera LU177 and others based on new radionuclides:
- 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. e.g. they are already using it for Prostate Cancer.
- new radionuclides – see my article about the Trial of 177Lu-Edotreotide (Solucin®) COMPETE trial.
- Different nuclear techniques – the currently approved therapy used something called “beta particles”, but alpha particles are gaining ground, see article “PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT)”
- The next generation? 177Lu Ops 201 (Satoreotide) (future of this trial is uncertain)
- PRRT liver-directed trial: Intra Arterial Lu177 for Neuroendocrine Tumours Liver Metastases (LUTIA)
- Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus
- Clinical Trial: Lu-177 DOTATOC (PRRT) in adult subjects with Somatostatin receptor (SSTR) positive Pulmonary, Pheochromocytoma, Paraganglioma, Unknown primary, and Thymic Neuroendocrine Tumors
See this great summary from NET Research Foundation of what might be next plus basic facts about PRRT – click here
The future of PRRT delivered by Dr Richard Baum who is the most experienced PRRT doctor on the planet. click here
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 information changes all the time
Background
I wanted 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.
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 every single PRRT centre – it’s a summary. This actually 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 the following NHS locations:
- London – at least 4 locations – Royal Free, Guys and St Thomas, University College (UCH), King’s College
- Liverpool – The Royal
- Manchester – The Christie
- Sheffield – Weston Park
- Bristol – Bristol Oncology Centre
- Newcastle – Freeman Hospital
- Coventry – University Hospital
- Glasgow
- The Royal Surrey St Lukes Guildford
- University Hospital Southampton
- Medway Maritime Hospital, Gillingham, Kent
- Oxford, Churchill Hospital
- Leicester
On 9 July 2018. The Scottish Medicines Consortium (NICE equivalent) 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.
Canada
On 7th Feb 2019, Health Canada approved Lutathera™ (lutetium (177Lu) oxodotreotide) for the treatment of unresectable (not removable by surgery) or metastatic, well-differentiated, somatostatin receptor-positive (expressing the somatostatin receptor) gastroenteropancreatic neuroendocrine tumors (GEP-NETs) in adults with progressive disease. The treatment was previously available on a trial basis. Read more here.
Site updates to follow but the following trial locations may be up and running first:
- Juravinski Hamilton
- LHSC London
- PMCC Toronto
- Sunnybrooke Toronto
- Cross Cancer Institute, Edmonton
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 LUTATHERA US website contains a map search which can be found at this link.
Europe (excluding UK which is listed above)
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):
Denmark – ‘Rigshospitalet’ since 2009. They have treated around 250 patients- and given 800 treatments.
Finland – Helsinki: Docrates Cancer Center
France – Hopital Beaujon AP-HP, Clichy (next to Paris)
Germany:
- Zentralklinik Bade Berka – click here
- Uniklinikum Saarland Homburg,
- Berlin, Klinik für Nuklearmedizin
- Wurzburg – University of Wurzburg
Italy – Milan, European Institute of Oncology
Netherlands – the combined NET centres of the UMCU Utrecht and AVL Amsterdam have an ENET certification and they both do PRRT.
UMCU – Utrecht
https://www.umcutrecht.nl/nl/Ziekenhuis/Ziekte/PRRT-behandeling-bij-NET-kanker
(only available in dutch)
AVL – Amsterdam
https://www.avl.nl/behandelingen/peptide-receptor-radionuclide-therapie-prrt/
(only available in dutch)
Rotterdam Treatment Centre – click here
Poland – Poland, Maria Skłodowska-Curie Institute of Oncology, regional branch in Gliwice
Serbia – Clinical Center Kragujevac, Centre of Nuclear Medicine
Slovenia – Ljubljana, University medical Centre Ljubljana
Sweden – Department of Endocrine Oncology Uppsala University Hospital – click here
Switzerland – University Hospital Basel, Radiology & Nuclear Medicine Clinic – click here. The University of Zurich also has excellent facilities – click here (call first to see if they accept patients not treated in Zurich)
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
EDIT. Due to COVID, an interim arrangement was put in place in Auckland. However, in July 2021, it was confirmed this was to become a permanent arrangement. Read more here.
Original info. 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:
- Pretoria:
– Steve Biko Academic Hospital and the University of Pretoria – Groenkloof Hospital (was called A Little Company of Mary) - Johannesburg:
– The Wits Donald Gordon Hospital (Private) – Dr L Louw
– JHB General – Dr L Louw (possibly temporary working at Rivolia) - Durban:
– Umhlanga Molecular Imaging and Therapy Centre of Excellence at Umhlanga Hospital (Private) – Dr Marsha Maharaja - Cape Town – Tygerberg Hospital
India
I have been contacted by CNETS India to add this to the list.
PRRT is now available in more than 10 cities in India including Delhi, Mumbai, Chennai, Chandigarh, Lucknow, Pune, Vellore, Vishakapatnam, Ahmedabad, Baroda, Kolkata, Jaipur. Both Lu177 and Actinium 225 / alpha PRRT is available in Delhi and a few other centres. Kind regards Dr Sugandha Dureja.
From patients I’m told the waiting list is long but the cost is much lower than in other countries,
Middle East, Asia, Far East (less India)
Azerbaijan – Nuclear Medicine Centre in Baku, Lu-177-DOTATATE and Ас-225-DOTATATE. Click here.
Turkey – Istanbul, Dr.Levent Kabasakal.
Israel – Hadassah 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”.
Kuwait – Kuwait Cancer Control Center (KCCC) – read article here.
Malaysia – Sunway medical Centre, Beacon hospital
Pakistan – check out this article – click here
Singapore – Singapore General Hospital and National University Hospital.
Hong Kong – Queen Elizabeth Hospital and Hong Kong Sanatorium & Hospital.
Philippines – St. Luke’s Medical Center, Global City, Taguig, Metro Manila.
South America
Brazil – Hospital SÍRIO LIBANÊS, SÃO PAULO
Chile – Instituto Oncológico Fundación Arturo López Pérez, Santiago
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
General Clinical Trials Disclaimer
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided in the clinical trials document. It’s very important to check the trial inclusion and exclusion criteria before making any contact. If you need questions, the articles here is very useful Questions to Ask About Clinical Trials | Cancer.Net
The inclusion of any trial within this blog should not be taken as a recommendation by Ronny Allan.
Top 10 Posts & Pages in the last 48 hours (auto updates) (Click the titles to read them)
Thanks for reading.
Personal Facebook. Like this page please.
Blog Facebook. Like this page please.
Awareness Facebook Like this page please.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Who needs a gallbladder anyway?
We can survive without a gallbladder, but clearly it is a useful, functioning organ, and we are better off to keep it if we can.
Neuroendocrine Cancer Clinical Trial – Lutetium-177Lu (Satoreotide)
What is Satoreotide? It’s an agonist treatment. i.e. a ‘next generation’ radiologand for Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds
A review of September 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
On my website RonnyAllan.NET, September was an interesting month because I had pushed out some blogs before I went on a planned overseas holiday from
Never mind the Bollocks – here’s the cancer
I don’t tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to
First and only FDA-cleared, fully automated chromogranin A assay
There has been controversy about the utility of Chromogranin A for many years now. Specialists have been critical about its use but to be fair
Neuroendocrine Cancer: Question, Clarify, Confirm
One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined
Clinical Trial – Lutathera NETTER-2 Important Update
UPDATE – Sep 25th, 2023 – Novartis radioligand therapy Lutathera® demonstrated statistically significant and clinically meaningful progression-free survival in first line advanced gastroenteropancreatic neuroendocrine tumors
Lanreotide: Ipsen injection devices vs generic injection devices
Whenever I get a chance to talk to a pharma involved in somatostatin analogue injection devices, I tell them one very important thing …… “To
Cancer doesn’t take holidays (but I do)
Glen Etive Scotland in 2018 After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my ‘big surgery’, holidays
A cup of tea
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
SOUTH AMERICA – Brazil : HOSPITAL SÍRIO LIBANÊS – SÃO PAULO – SP
thank you!
You can add Southampton to your list now Ronny. I was given the option yesterday of going to Guys or waiting until after Christmas to have my PRRT at Southampton.
Thanks, been waiting on this news. See you at the Patient Conference.
Thank you Ronny. As always, an excellent piece of work for us all. I receive PRRT out of Edmonton’s Cross Centre in Alberta, Canada. Currently, I am scheduled to receive 12 treatments. I had my initial 4 and now receive them every six months until I reach 12. I am assessed every six months to see whether I qualify for the next. PRRT has given me my life. My 100+ tumours are active but have not grown or spread. Happy days. Good luck all.
I’m receiving this treatment in Durban, South Africa, for stage 4 medullary thyroid cancer, targeting mainly metastases in the lungs and liver. According to the approvals quoted above would I be excluded from treatment?
Not sure. Best to ask your doctors. The approvals quoted are USA and Europe.
Hi Ronny,
First of all, thank you for all that you do for the NET community. I have an update and a question for you. For the update, Dr. Xavier Keutgen is no longer at Rush University Hospital at Rush in Chicago. He moved his practice to University of Chicago, obviously in Chicago. Also, I was wondering why a link that you share doesn’t include Iowa and University of Chicago as Multidisciplinary Sites, especially since Iowa just received acclaim for their site. I am referring to this posting of Centers and Clinics in the US: https://ronnyallan.net/2017/04/25/diagnosed-with-neuroendocrine-cancer-10-questions-to-ask-your-doctor/?fbclid=IwAR0jQzCQq8wzlYTp8CoK2juGxmXA_GUyd4eD9_5jwx0br-3KHooFR6N8DFI
I checked the NANET site and I don’t see this anywhere. However, this link is still active.
Can you get back to me as to how these two centers can get listed on this site? I appreciate your time.
Thank you,
Jan
thanks for the update. I cannot really comment on why NANETS doesn’t list particular hospitals, cannot control that and not sure what criteria NANETS to select. Try contacting NANETS please., I have listed IOWA separately now so they technically are on my list.
Hi Ronny,
2 additions for PRRT in NL,
the combined Net centres of the UMCU Utrecht and AVL Amsterdam have an ENET certification.
they both do PRRT.
UMCU is now running a trial – LUTIA trial- in which they deliver the “stuff” via an artery in the groin (directly to one liverlobe) rather then via IV, to determine whether that would be considerably more effective (hopefully also taking into account the disavantages of this method ( artery catheter, infection artery leakage possibilities,no lifting etc.))
UMCU- Utrecht
https://www.umcutrecht.nl/nl/Ziekenhuis/Ziekte/PRRT-behandeling-bij-NET-kanker
(only in dutch available)
the LUTIA trial , I think at the moment 4 or 5 participants:
https://clinicaltrials.gov/ct2/show/NCT03590119
AVL -PRRT since 2016 maybe more specialised towards LongNETS, but am not sure
https://www.avl.nl/behandelingen/peptide-receptor-radionuclide-therapie-prrt/
(only in dutch available)
brgds Nicole vd Raad-Netherlands
wow – thanks for the update – the trial is very interesting too, I might write a new article. I had heard about this potential for delivery of Lutathera but didn’t know about the trial – thanks again. Do you work for NET Kanker?
I note the trial doc still says “not yet recruiting” at all 3 locations but do you know if this is just out of date or have they started?
I have been feeling extremely exhausted this last couple of weeks, not wanting to get out of bed just sleeping all day. My consultant wants me to have PRRT in August and says it will shrink my tumours. I am interested to know if this will then give me energy. I don’t want to get out of bed, showering is a huge effort and I don’t want to go out although friends ask me for a quiet lunch, which I always use to enjoy. I have neuroendocrine tumours in my pancreas, liver mid gut, lymph nodes. I had an operation last July, one year ago, when they took out my bowel and cancerous masses. I am desperate to have some energy.
there’s no easy answer to that – many many factors involved. You would think that less tumour would help but you can never be certain with NETs. I would look at vitamin and mineral deficiencies. Start here and use the links inside. Get tested asap for Vit B12 and Vit D, those are the main culprits. Also get a thyroid panel done as many NET patients have hypothyroidism issues. Get T3, T4 and TSH as a starter. https://ronnyallan.net/2015/06/30/neuroendocrine-cancer-nutrition-vitamin-and-mineral-challenges/
Northwestern University In Chicago, IL also have Lutathera. When I initially called them and asked for Lu-177 Dotatate, they were clueless, but when I mentioned Lutathera, they new exactly what I was talking about. This is still NEW treatment for a lot of health providers. My Mom is waiting for her first session to be scheduled. The insurance approval took 4 weeks.
Yes, the nomenclature can be confusing. The FDA approval was “Lutathera” which is the commercial brand name
Hi Ronny,
Do you know, has any hospital offer Lu-177 Dotatate (hospital labels the Lu177 and peptide Dotatate in the hospital). Does it have to be Lutathera?
I think its the same thing
Hi Ronny,
Please let me know if this treatment is availble in Romania – I can’t find anything about it expect for a document on Lutatheras website that it’s translated in Romanian.
Thank you so much
Nela
Have you tried these guys ? http://www.aptnr.ro/en/
Just wanted to let you know that The James Cancer Hospital at Ohio State University Medical Center ran 5 people through a clinical trial of PRRT in December. They mixed their own amino acid compound up because the normal source, Puerto Rico, can’t currently produce it. They felt that their own amino acid mix causes less nausea and vomiting. Since PRRT was finally approved by the FDA, The James has set up their first group to go through the first round of treatment on March 13-14. I am in that group. They had to go through an appeals process just to get the Gallium PET scan approved. It was approved immediately once my oncology team spoke with a radiation oncologist at Aetna. I find it difficult to believe that they would pay for the PET scan they have denied for over a year if they weren’t going to cover the costs of the PRRT. I honestly thought I was going to die before this was approved in the USA. I have been stage 4 PNETS for over 4 years and I have been off all treatments since I had such an adverse reaction to the chemo drugs in August. They did start Lanreotide shots back up but only because the Carcinoid Syndrome was getting out of control. It has done little to nothing to slow the growth and spread of the cancer. So, I am hoping that March 13-14 will bring me good luck and shrinkage of the tumors because I am in horrible pain 24 hours a day. I have found nothing that controls the pain and allows me to sleep for more than 2 hours. I am putting all my eggs in the only basket left and hoping for a great response to the Gallium PET scan and the PRRT.
https://polldaddy.com/js/rating/rating.js
Good luck Pamela and thanks for the update
Pamela, how are you doing? I’m on the schedule at OSU for mid-April!
We are in the U.S. and waiting for 177 Lu-Dotatate to finally become available for patients here. Unfortunately, nobody could tell us when it would happen even though the physicians are aware of the FDA approval. This is very frustrating. I wish I knew who to contact with regards to the length of the wait. I fear the bureaucracy is going to prolong the time for this drug to get to patients.
I’m hearing this a lot. It was anticipated that there would be a gap between approval and deployment. This happens a lot with different drugs and in many countries. I think the approval on 26 Jan 2018 was very well publicized and everyone was 99% positive it would happen. It seems that many establishments have not done some very low risk planning by putting in some resources to make sure the gap was as small as possible. There may also be some issues with supply of the drug but not heard that formally. I feel for people who really need this treatment and the clock ticks on. In UK, people would write to their Member of Parliament, I suspect that’s either your Congressman or Senator – not sure how that works.
Hi Ronny,
I am happy to share the good news: Northwestern Hospital in Chicago, IL has Luthera! My Mom had an initial appointment with the oncologist there and we were told that the only delay we could expect would be the insurance approval. Apparently, Northwestern was running a trial for Luthera and they have retained a qualified nurse who can administer the drug. UIC (University of Chicago) and American Cancer Center in Zion, IL do not have Luthera. After waiting for UIC to provide any timeline for the implementation of the drug, I called other hospitals in the area. I feel lucky that NW has it! I was told that Luthera is being imported to the U.S. from Europe. Along with training for medical personnel, it takes about 12 months for a medical institution to make it ready for patients. This is ridiculously long for cancer patients. Taking into an account the fact that this treatment has very minimal side effects, imagine the demand!
Amidst, my excitement, I managed to misspell Lutathera! 🙂
Reblogged this on Ronny Allan – Living with Neuroendocrine Cancer and commented:
BREAKING NEWS for email followers
reading about PRRT. NET small intestine, metastisis to liver. Not pancreas. Ga-68 scan with uptake in May, surgery in June. Ocreotide (Sandostatin) 30-mg since May (9 injections to date). Follow-up Ga-68 scan in September shows no progression. Serotonin (serum) now well within normal levels. What now? Is there a checklist for PRRT candidates to consider? Need to continue Sando, hope for future tumor shrinkage, reduction in Serotonin discharge?
I don’t think there is a “checklist” other than the wording of the approval. If “stable”, then perhaps keep it in reserve for signs of progression. Does your doctor have a view?
I was diagnosed with Neuroendicrine cancer in May 2015. I was then treated with Sandostatin LAR every 4 weeks but the cancer kept on spreading. I had my second Lutathera treatment last week. The PET-scan, however, showed that the tumors “looks slightly more intense but with no significant increase in size.” Is this normal? What is the maximum number of treatments that can be done safely? My white cell- and blood platelet count is very low.
https://polldaddy.com/js/rating/rating.js
As I understand it, the max Lutathera (PRRT) is 4. However, i know people in Europe who have done more including a lady on 11! Personalised dosing is being looked at and is already in place in certain European centres. I have no idea what they mean by ‘intense’, perhaps ‘hypervascular’. As for white cell and platelets, unsure of this, better to ask your doctors. Good luck for your treatment.
My Oncologist counsels to forget PRRT as long as Octreotide works. i feel fine and liver tumors are even shrinking. My only concern is that if Octreotide and PRRT target the same receptors then when/if Octreotide stops working, PRRT potential success will also decline.
https://polldaddy.com/js/rating/rating.js
In UK you won’t get it unless you other treatment isn’t working or tumors are progressing. Some people are suggesting it could be a first line treatment. I suspect private providers might hope so he said cynically 😃 I’m with you, I hope it’s there when I actually need it
Thank you, Ronny, as always.
I travel to Singapore for PRRT and the PET dotascan. I’m grateful it is only around 3 hours away by airplane from my country. For now, only one hospital there does PRRT, but by the latter part of the year, another hospital will have it as well.
I’ve had 1 session so far. Do any of you know if it’s too early to tell through a PET dota or some other scan if PRRT is actually working for me? I have PNET Glucagonoma with liver mets. Thanks.
https://polldaddy.com/js/rating/rating.js
I don’t know really, your Doctors will be keeping an eye on tumour size though.
You should be able to check your tumor blood markers and get an indication of how it is working
https://polldaddy.com/js/rating/rating.js
Hi Ronny,
Here is an update. I was diagnosed with PNET in May 2016. I am living in Hong Kong.
I received 2 PRRT treatments in a private hospital in Hong Kong In the same year after my debulking surgery. Then I started lanreotide injections.
My condition has improved a lot.
It is always my pleAsure to read your website. Keep up the good work and stay well.
Thank you
I had my 8th Lutetium (Lutathera) treatment last week. It has been available in Canada since 2010, though only used in two locations that I know of. I am fortunate to live a 2 hour drive from one of them. I’m waiting for the results of the latest post-treatment scan, but up to this point, there there has been no spread of disease since diagnosis and my existing tumours have been shrinking. I feel 100% well and I’m able to lead a pretty normal life. It frustrates me that this treatment isn’t readily available to NETS patients everywhere.
https://polldaddy.com/js/rating/rating.js
Lutathera – is a brand name of Lu177 Dotatate – NETSPOT and Somakit are brand names as well. NETSPOT and SOMAKIT are different drugs (one is Dotatate and one is dotatoc) Other companies make other version of PRRT drugs (Lutate for instance)
NETSPOT and SOMAKIT are diagnostic equivalents to Lutathera – isotope is switched from Gallium-68 for PET scan in NETSPOT and SOMAKIT to Lu-177 (Lutathera) for therapy
Hello hi i would love to hear your results with this treatment i live in usa and it is really frustrating that this is not available here, if it works i might as well travel to Canada to get this treatment i have the same disease now im doing fine with the sandostatin every four weeks but is just to control the symptoms so if you don’t mind please let us know if this worked for you, thank you and good luck…
https://polldaddy.com/js/rating/rating.js
I’ll have my next CT scan on August 30 and as long as that goes well, another treatment around the beginning of November. By all means, check my blog for updates around those dates. If there’s any other information I can help you with, please let me know!
I am not aware that Canada is open to out of country patients for PRRT. Canada has a lot of its own people to get through the system first. There is limited capacity still in the country.