LU 177 - protocol in London

[Ssiddy]

Hi

Can anyone tell me how I should approach accessing LU 177 for my father? We are based in the UK and he is seen at the Royal Marsden. Specifically:

1. What scan do we need to ask for? Is it carried out at the Royal Marsden

2. At what point in the treatment timeline would you go for this? He has failed 1st line hormone therapy and had docetaxel. He now has a rising PSA on enzalutamide.

He is stage 4 with mets. We have an appt with his oncologist, Dr Khoo, this Thursday.

Any advice on the process would be gratefully received.

And anything else I need to think about.

Thanks

Siohban

[Tall_Allen]

Lu-177-PSMA is not available in the UK, as far as I know. You'd have to go to Germany for it. They usually give a Ga-68-PSMA-11 PET scan along with it. I'm not sure if Xofigo has been approved in the UK, which would be another good choice if he has bone mets.

Can he do another round of chemo - either Taxotere or Jevtana? That sometimes resensitizes the cancer to Xtandi or Zytiga. I don't know if Provenge was approved in the UK. Estrogen patches sometimes help. there may be clinical trials he is eligible for.

[Patach in reply to Tall_Allen]

Genesis Windsor UK offer Lu-177, I will having my 6th cycle end of May this year. PSA is falling, Lymph nodes are resolving seminal vesicles are being stubborn.

[Dundalk in reply to Patach]

Private or nhs.. cost please.. thanks

[Chubby42]

Hi guys I am looking at this for later treatment but does anyone know what would be the resulting expectancy after having the LU-177 treatment if it works how long would this be expected to give you a year or more ? Im sure its prob different for everyone like most treatments but was hoping for an average time frame.

Cheers

[Ssiddy]

I saw a great article in the Sydney morning heard with a man using this as a last treatment option and he got 2.5 years from it. Will see if I can find the link.

My concern is that if we have to travel to Germany then I need to do that whilst it is possible for my dad to travel.

Xofigo is approved here so it may be an option if the next scan shows bone mets. As is cabazitaxel (jevtana).

I suppose I can’t second guess it until tomorrow but better to go armed with all the information.

Thank you for your responses. I will email the doctor recommended.

What would I do without this forum!

[Chubby42 in reply to Ssiddy]

Thanks dor the info Ssiddy 2.5yrs is a pretty good outcome hopefully it will make the NHS within a couple of yrs if not Im prepared to travel to Germany or Australia.

Cheers

[Ssiddy]

smh.com.au/national/from-lu...

[podsart]

Nalakrats

Do you have contact info for NYC Dr? Is he doing trials or offering this treatment ?

It’s sad that we have to go to another country for this

Where do u rank this treatment against the others we typically discuss?

[wrando]

I'm heading to NY city tomorrow to see Dt. Tagawa about his trials. He has LU-177 psma and Actinium pmsa. Lu is beta Actinium is alfa like radium 223...

[AlanLawrenson]

My brother had Lu177 PMSA therapy in Sydney 12 months ago. Two injections at A$10K each saw his PSA go to almost zero and all mets disappeared. In the trial described in the Sydney Morning Herald on the 30 patients treated at the Peter MacCallam Cancer Institute in Melbourne, 5 patients had a similar result. Others had less complete outcomes. It is necessary to have a GA68 PET-CT scan to assess the extent on bone mets and suitability for this technology to work. (about 15% don't have sufficient receptor sensitivity to work). Read the follow review of the technology published this month:-

Mol Imaging. 2018 Jan-Dec; 17: 1536012118776068.

Published online 2018 Jun 6. doi: 10.1177/1536012118776068

PMCID: PMC5992796

PMID: 29873291

PSMA Theranostics: Current Status and Future Directions

Kambiz Rahbar, MD,1 Ali Afshar-Oromieh, MD,2 Hossein Jadvar, MD, PhD,3 and Hojjat Ahmadzadehfar, MD, MSc4

[Ssiddy]

Hi.

For anyone following this post and for future reference I have found LU 177 in London at thelondonclinic.co.uk/treat...

My dad is still on enzalutamide but is having bone scans and will know in a month where we are at.

Siobhan

[Dominos7 in reply to Ssiddy]

They are seem to be retracting the fact that they are offering it based on new information on that link .

[Ian54]

Hi

Just booked for a PSMA pet scan at London Clinic they charge £2588 compared to £3700 at Royal Marsden. They also offer Lu177 have not got a price for that yet. Seems NHS reluctant to refer or pay for this treatment. Hope this helps.

[Dominos7 in reply to Ian54]

Ian, do they actually offer it though they are now saying they don't?

[Ssiddy]

The Marsden said they are potentially starting a trial in June so depending on your situation it may be worth calling and seeing if you can get on to that. Are you being seen at the Marsden?

[Ssiddy]

Just looked at the website. It says LU 177 is currently unavailable in the UK outside of the VISION trial. This is annoying to say the least. I thought this was a potential step for my dad. There is no way he could travel to Germany for treatment.

[Dominos7]

We are in the same boat we have booked a psma pet scan based on the London clinic offering it on their website a month ago. My uncle is also not well enough to travel to germany. Their website has changed and I spoke to nuclear medicine reception today and a clinician is to call me back tomorrow. the rest of the article beneath the " not available " bit is the same as it originally was stated they offer it as a day procedure which is why we booked a psma pet with them at £2588. Now we are left with a scan and no treatment as he is unfit for Chemo.

[Ssiddy in reply to Dominos7]

Yet that part of their website says you can still have a consultation?! Let me know how you get on please. Is your uncle at the marsden too?

[Dominos7 in reply to Ssiddy]

ps no we are not at the marsden, though considered it with a view to the private 2nd opinion facility they offer.

[Dominos7]

There is a lot of confusion with regards to this treatment in the Uk. After a very worrying and anxious last 24 hours we pursued the London clinic to clarify their position and the position seems to be it is in the pipeline but not yet there HOWEVER.. we went further and contacted the consultant who authorised psma pet and it seems that if the patient meets the criteria they can apply to bring it in to clinic and use it on a case by case scenario; I'm assuming a positive pet scan (patient expressing psma) is one then mets in organs and bones is another and a rising psa whilst on 2nd line hormone Xtandi or Zytiga . London clinic specifies resistance to xtandi and climbing psa as one of criteria or have already received chemo or are unable to on their website .

[Ssiddy]

Thanks for clarifying this. There is hope to get Lu177 in London outside of the trial then? Would you mind giving us the name of the consultant for reference? Thx

[Dominos7]

will pm you some information

[Dundalk]

Royal Marsden or Guys

[mgaa]

Hello, I hope both of you are doing well and healthy. I'm nearly in the same position with my father and I was looking at London Clinic to bring him to the UK, is it possible to contact you for more details ?

[Ssiddy in reply to mgaa]

Hi.. you are very welcome to contact me. My dad hasn't had this treatment yet. Please send me a DM as I would love to be of help if I can.

[yulz]

We were doing some research for my father who is stage 4, and seems like Royal Marsden, HCA, London Clinic, Genesis Care and Southampton Hospital offer LU-177 PSMA treatment on a private basis. I am not sure about the NHS availability.

[Ssiddy in reply to yulz]

oh please will you keep me up to date with what you find out? Hope your father is doing well. All the best.

[yulz in reply to Ssiddy]

Sure!