Lutetium Lu 177 dotatate (Lutathera®) – PRRT

Short PRRT Primer

What is Peptide Receptor Radionuclide Therapy (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 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.

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

This therapy has actually been in use in Europe and some other places for over 10 years but on a limited scale and until recently were never formally approved by national drug agencies. Despite this long use, the EU approval in 2017 was actually the very first for PRRT anywhere in the world. This was quickly followed by FDA approved in the US. In the meantime, I constantly see stories of patients travelling to Switzerland, Germany, Netherlands, Sweden, Great Britain and others; many 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.

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 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 GEPNET 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.

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 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, 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.

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.

merkel cell prrt ga68 imagesCase Rep Oncol 2019;12:98–103 Merkel Cell Carcinoma https://doi.org/10.1159/000496335

What about Pheochromoctyoma/Paraganglioma?

This article discusses the efficacy of PRRT in Pheo/para – click here. 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.

Are their any Guidelines for PRRT?

Until a few years ago, most PRRT was done via clincial 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:

  1. BACKGROUND
  2. TREATMENT OVERVIEW
  3. PATIENT SCREENING
  4. SOMATOSTATIN ANALOG THERAPY
  5. TREATMENT LOCATION
  6. ROOM PREPARATION
  7. PATIENT PREPARATION
  8. AMINO ACID SOLUTIONS
  9. ANTIEMETIC MEDICATIONS
  10. RADIOPHARMACEUTICAL ADMINISTRATION
  11. DOSAGE MODIFICATIONS FOR ADVERSE REACTIONS
  12. PATIENT MONITORING AND POTENTIAL REACTIONS
  13. RADIATION SAFETY
  14. DOSIMETRY AND POSTTREATMENT IMAGING
  15. TOXICITY
  16. FOLLOW-UP

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.

LATEST ON EXPANDED NETTER-1 TRIAL DATA. “Novartis has announced presentation of a new analysis of Lutathera (lutetium Lu 177 dotatate) NETTER-1 data at the 2018 European Society for Medical Oncology (ESMO) congress examining the impact of Lutathera treatment on patients with low, medium or high liver tumor burden. The data show that Lutathera treatment results in significant improvement in progression free survival (PFS) regardless of the extent of baseline liver tumor burden (LTB), elevated alkaline phosphatase (ALP) liver enzyme or presence of large (>30mm diameter) lesion in patients with progressive midgut neuroendocrine tumors (NETs) compared to octreotide LAR alone.”

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.

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.

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.

Where can I get PRRT?

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.

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 2 locations – Royal Free, Guys and St Thomas
  • 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 update 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 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 16 Oct 2019)

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 San Diego, Scripps and MD Anderson and UCSD Hillcrest Now tbc
Connecticut Yale New Haven Medical Center Now tbc
Connecticut Hartford Hospital Now Salner, Andrew, MD
Radiation Oncology
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 David Diamond MD
Florida Orlando Health Now tbc
Georgia CCTA Newnan, Atlanta Now Dr. Phan
Hawaii Queen’s Medical Center Now Dr. Marc Coel
Idaho Mountain States Tumor Institute at St. Luke’s Hospital, Boise Now
Idaho Eastern Idaho Regional Medical Center, Idaho Falls, Idaho Now
Illinois Rush University Chicago Now
Illinois Northwestern Chicago now tbc
Illinois The University of Chicago Medicine now Xavier M. Keutgen, MD
Illinois Loyola University Medical Center Maywood now tbc
Illinois CTCA Chicago 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 Now 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/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 University of Rochester Now tbc
New York Lenox Hill NYC Now tbc
New York Sloan Kettering Now tbc
New York Stony Brook University Cancer Center Long Island Now Nurse Navigator, Patty Zirpoli, RN
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
South Dakota Sanford in Sioux Falls now tbc
Tennessee Vanderbilt Nashville Now tbc
Texas MD Anderson Houston Now tbc
Texas Baylor, Scott, & White Hospital Dallas Now tbc
Texas Excel Diagnostics Houston Now tbc
Texas CHI St Lukes Houston Now tbc
Texas BAMC San Antonio(VA) Houston Now tbc
Utah Huntsman Cancer Institute, Salt Lake City Now tbc
Vermont University of Vermont Medical Center Now Jay Kikut, MD, Director of Nuclear Medicine and PET
Virginia Carilion Clinic Roanoke Now tbc
Virginia Sentara Norfolk General Hospital Now tbc
Washington (State) Virginia Mason Seattle Now Dr. Hagen Kennecke
Washington (DC) VMedStar Georgetown University Hospital Now tbc
West Virginia VMU Cancer Institute Morgantown Now Shalu Pahuja, M.D
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

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:

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 Centreclick here

Poland – Poland, Maria Skłodowska-Curie Institute of Oncology, regional branch in Gliwice

SerbiaClinical 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 Clinicclick here

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

Azerbaijan – Nuclear Medicine Centre in Baku, Lu-177-DOTATATE and Ас-225-DOTATATE. Click here
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

IndiaMahatma 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. Also – TATA Memorial Hospital Mumbai (waiting time is long, but cost is low: $200) and there are private clinics in Pune (cost is $1500) and Bengaluru (cost is around $6000). (Info from Russian patient group).

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.
PhilippinesSt. Luke’s Medical Center, Global City, Taguig, Metro Manila.

South America

Brazil – Hospital SÍRIO LIBANÊS, SÃO PAULO

ChileInstituto Oncológico Fundación Arturo López Pérez, Santiago

——————————————–

What’s next for NETs and PRRT and Clinical Trials?

LATEST ON EXPANDED NETTER-1 TRIAL DATA. “Novartis has announced presentation of a new analysis of Lutathera (lutetium Lu 177 dotatate) NETTER-1 data at the 2018 European Society for Medical Oncology (ESMO) congress examining the impact of Lutathera treatment on patients with low, medium or high liver tumor burden. The data show that Lutathera treatment results in significant improvement in progression free survival (PFS) regardless of the extent of baseline liver tumor burden (LTB), elevated alkaline phosphatase (ALP) liver enzyme or presence of large (>30mm diameter) lesion in patients with progressive midgut neuroendocrine tumors (NETs) compared to octreotide LAR alone.”

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 other based on new radionuclides:

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

Thanks for reading

Ronny

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45 thoughts on “Lutetium Lu 177 dotatate (Lutathera®) – PRRT

  • Heather Slepcevic

    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.

  • Susan

    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.

  • Megan Hean

    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?

  • Janet Rattazzi

    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.

  • Nicole

    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 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.

  • 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.

  • Dianah

    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?

  • Ionela Grigoras

    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

  • Pamela Gredicak

    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.


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  • Tatyana

    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!

    • Bob Hearn

      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?

  • Oryx

    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.


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    • 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.

    • 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

  • Desi

    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.


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  • 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.


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    • Josh M

      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)

      • Ed V Ost

        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

    • Simon Pedro Arroyo

      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…

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      • 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!

      • Susan

        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.

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