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LU-177/PSMA

User
Posted 26 Apr 2019 at 19:03

For those that are thinking about this treatment, it is now available at Windsor in the UK.

 

https://www.genesiscare.com/uk/treatment/cancer/theranostics/177lutetium-psma-therapy/

 

All the best

 

Roy

User
Posted 26 Apr 2019 at 19:03

For those that are thinking about this treatment, it is now available at Windsor in the UK.

 

https://www.genesiscare.com/uk/treatment/cancer/theranostics/177lutetium-psma-therapy/

 

All the best

 

Roy

User
Posted 27 Apr 2019 at 00:05
I don't think that is a lack of interest or a personal reflection on you Roy, it's just that you are involved in a journey that most of us have no experience of.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Apr 2019 at 11:47

Andy62, the version of PSMA targeting with 225-Ac, which is an alpha emitting isotope, has been used successfully as an early treatment. See here:
https://link.springer.com/article/10.1007/s00259-018-4167-0

Edited by member 27 Apr 2019 at 12:15  | Reason: Add link

User
Posted 26 Apr 2019 at 22:57
Thank you for posting this. It looks like some of these recent advances are now becoming available in the UK but apparently not yet for NHS patients as yet?

Do keep us posted on how things are with you

Barry
User
Posted 27 Apr 2019 at 00:29

Hi Roy, rest assured many people read and value your posts, just don’t want to say stuff in response for the sake of saying it.

as someone on abiraterone I know that will fail at some stage, your email will be a subject of discussion with my onco next visit 

thnaks for posting

kev 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 27 Apr 2019 at 03:19
Hi Roy,

Thanks for posting that. Do you know how much a course of treatment costs? As usual, there is no mention of prices.

Cheers, John.

User
Posted 27 Apr 2019 at 08:15
I for one read your posts and appreciate them.

I tend to only respond if I have something additional to add or I want to provoke a reaction from Lyn!

User
Posted 27 Apr 2019 at 09:48

I read too.

This one is interesting, and it seems strange that there isn't something like this that can be used for the initial radical curative treatment, which would be more targeted than RP or radical RT.

I was looking through treatments when I was initially diagnosed. It seemed to me that there should be something that targets prostate cells (cancerous or not). Maybe something like inducing an auto-immune response which targets cancer cells, or a selective bacteria or virus which is interested only in prostate cells (need to avoid it leaking into the healthy population!).

User
Posted 27 Apr 2019 at 16:36

Interestingly, my oncologist who I see in my local NHS hospital is listed as working at this clinic in Windsor.  It only opened very recently.  I don’t see her again until late August, but will ask her about this treatment then if I get 5he chance.

Ulsterman

 

User
Posted 07 Jun 2019 at 02:52

There was an article in the Daily Mail recently about this treatment. It is now available privately at Genesis Care Windsor. The cost is £12,000-£13,000 per treatment with 2-6 treatments, the treatments are every 6 weeks.

https://www.dailymail.co.uk/news/article-7096959/Prostate-cancer-breakthrough-New-treatment-seek-destroy-tumours-avoid-chemotherapy.html

 

 

Edited by member 07 Jun 2019 at 02:55  | Reason: Not specified

User
Posted 25 Jun 2019 at 11:59

I understand that only a very few NHS hospitals have the facilities for G68 PSMA PET-CT scanning.

This trial shows how effective it is. I read that is so much more accurate that Choline scans in one country have been abandoned altogether!

http://www.practiceupdate.com/content/assessment-of-68ga-psma-11-pet-accuracy-in-localizing-recurrent-prostate-cancer/81710

In case you can’t access the results of the trial above, (it may be subscription only), the summary of its conclusions are here:

TAKE-HOME MESSAGE

– Jeffrey M. Wiisanen, MD

 Cheers, John.

Edited by member 25 Jun 2019 at 13:27  | Reason: Not specified

User
Posted 24 Aug 2019 at 16:27

So, I saw my NHS consultant at a hospital in Slough this week.  I mentioned to her that forum members had been talking about Lutetium treatment at Genesis Care in Windsor and she confirmed that she is, indeed, one of the consultants leading on that particular treatment.  From talking to her, I think Windsor is probably a bit more expensive than Finland.  She was aware that men were travelling to Finland for the treatment.  One of the main challenges with the treatment was that some men get a few months' benefit from it and yet there are others who seem to get much longer.  They are trying to understand why that is the case.  I asked when, if ever, it would be available on the NHS.  She said the NHS would want lots more data and it wouldn't be on the agenda for at least 5 years at the very earliest.

She told me she hoped I would never need to consider the treatment.  I asked her for a discount if I ever did.  She laughed.

If I did need this treatment, I would have every confidence in her abilities as an oncologist, and the Windsor treatment centre is 10 minutes' drive away.

Ulsterman

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User
Posted 26 Apr 2019 at 22:57
Thank you for posting this. It looks like some of these recent advances are now becoming available in the UK but apparently not yet for NHS patients as yet?

Do keep us posted on how things are with you

Barry
User
Posted 26 Apr 2019 at 23:23

Hi Barry I was asking my Onco if he thought it may become available in the future in the NHS, and his reply was that they do not have enough oncologists in the system or the infrastructure to carry out the trials necessary even though it looks promising.

 

i do keep posting updates on my journey but don't seem to get any replies.

 

thank you

 

 Roy

User
Posted 27 Apr 2019 at 00:05
I don't think that is a lack of interest or a personal reflection on you Roy, it's just that you are involved in a journey that most of us have no experience of.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Apr 2019 at 00:28

Hi Lyn

 

Fair point. I have chosen my own approach in the way I have tackled the cancer and it may not follow the norm. I am sure I drive my Onco mad sometimes lol.

 

All the best 

 

Roy 

User
Posted 27 Apr 2019 at 00:29

Hi Roy, rest assured many people read and value your posts, just don’t want to say stuff in response for the sake of saying it.

as someone on abiraterone I know that will fail at some stage, your email will be a subject of discussion with my onco next visit 

thnaks for posting

kev 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 27 Apr 2019 at 03:19
Hi Roy,

Thanks for posting that. Do you know how much a course of treatment costs? As usual, there is no mention of prices.

Cheers, John.

User
Posted 27 Apr 2019 at 08:15
I for one read your posts and appreciate them.

I tend to only respond if I have something additional to add or I want to provoke a reaction from Lyn!

User
Posted 27 Apr 2019 at 09:48

I read too.

This one is interesting, and it seems strange that there isn't something like this that can be used for the initial radical curative treatment, which would be more targeted than RP or radical RT.

I was looking through treatments when I was initially diagnosed. It seemed to me that there should be something that targets prostate cells (cancerous or not). Maybe something like inducing an auto-immune response which targets cancer cells, or a selective bacteria or virus which is interested only in prostate cells (need to avoid it leaking into the healthy population!).

User
Posted 27 Apr 2019 at 11:33

Hi John (Bollinge)

i am afraid I do not know the cost of the treatment but I believe you can contact them via the linked site. I have found that there is a large variance in cost such as Australia at approx £5000 to Germany at €10,000+. If you do find out I am sure it would be of interest to us all on the forum.

 

All the best

Roy

User
Posted 27 Apr 2019 at 11:47

Andy62, the version of PSMA targeting with 225-Ac, which is an alpha emitting isotope, has been used successfully as an early treatment. See here:
https://link.springer.com/article/10.1007/s00259-018-4167-0

Edited by member 27 Apr 2019 at 12:15  | Reason: Add link

User
Posted 27 Apr 2019 at 12:04

Hi Andy

My thought process is similar to yours in that if there is an element that only attaches itself to the prostate cancer and not to the healthy cells, why not use it as a "Trogan Horse" to deliver a virus that the immune system recognises and attacks or a radio active particle to destroy the cancer. 

When I had my PSMA scan several years ago in Munich and saw the scans, it lit the cancer up like a beacon which got me thinking of the possibilities, as the way we deliver treatment now is a scattergun approach and I didn't like the idea of killing or damaging the healthy cells and maybe causing more cancers down the road.

i hope in time this will take over from chemo in time as Docetaxel has been around since the war as It is associated with mustard gas I believe.

so we can only hope that the price becomes more attractive to NICE and maybe one day we will see it as a treatment we can all access.

cheers

Roy

User
Posted 27 Apr 2019 at 12:14

Hi Dark Warrior

in Germany they are combining the two and also there is a new particle 227 which decays into 225 so hopefully they see promise, which if you " follow the money" you will see the big pharmaceuticals are buying the rights to these new elements.

cheers

Roy

User
Posted 27 Apr 2019 at 12:32

Cheers, John

Originally Posted by: Online Community Member

Hi John (Bollinge)

i am afraid I do not know the cost of the treatment but I believe you can contact them via the linked site. I have found that there is a large variance in cost such as Australia at approx £5000 to Germany at €10,000+. If you do find out I am sure it would be of interest to us all on the forum.

 

All the best

Roy

Fortunately I am presently cancer-free after my surgery almost a year ago, but I have seen the prognostications regarding recurrence, so I am keeping up to speed with all new developments.

 

Cheers

 

User
Posted 27 Apr 2019 at 13:39
Roy, that is an interesting development. I believe that trials of both the Lu177 and the thorium 227 are under way in this country.
User
Posted 27 Apr 2019 at 16:36

Interestingly, my oncologist who I see in my local NHS hospital is listed as working at this clinic in Windsor.  It only opened very recently.  I don’t see her again until late August, but will ask her about this treatment then if I get 5he chance.

Ulsterman

 

User
Posted 06 Jun 2019 at 15:56

Hi

I am new here, my step dad has advanced Prostate cancer he’s sadly been battling with it for many years now. He starts this trail tomorrow at a hospital (private!) in London. My mum is his sole carer and is certainly feeling the anxiety of the start of a new treatment and not knowing what to expect.

 

the hospital have advised him not to use public transport to get home they live over an hour from the hospital on the tube due to his risk to others especially the old / young.

 

we can safely say we have no idea what to expect but if it gives him some more ‘good’ times then I hope it is worth it. In regards to cost I have no idea I know it is expensive and he is luckily covered by private healthcare..

 

 

User
Posted 06 Jun 2019 at 18:26

Hi Lucie

wonderful news that your step dad has managed to get the treatment. It seems to be tolerated well by most people but there is a chance of the saliva glands being affected, but I am sure they have told you the possible affects. Could you please give us some more info as to your step dads PSA, Gleason score, areas of body affected  such as lymph nodes, bone etc and keep us informed of the outcome.

All the best

Roy

User
Posted 06 Jun 2019 at 18:45

Originally Posted by: Online Community Member

the hospital have advised him not to use public transport to get home they live over an hour from the hospital on the tube due to his risk to others especially the old / young.

If he puts on a radiation protection suit with warning symbols on it, I'm sure he'll get the carriage all to himself...😀

User
Posted 07 Jun 2019 at 02:52

There was an article in the Daily Mail recently about this treatment. It is now available privately at Genesis Care Windsor. The cost is £12,000-£13,000 per treatment with 2-6 treatments, the treatments are every 6 weeks.

https://www.dailymail.co.uk/news/article-7096959/Prostate-cancer-breakthrough-New-treatment-seek-destroy-tumours-avoid-chemotherapy.html

 

 

Edited by member 07 Jun 2019 at 02:55  | Reason: Not specified

User
Posted 07 Jun 2019 at 03:05

Similar article in Express, also talks about early Enzalutamide:

https://expressmirror.uk/prostate-cancer-breakthrough-new-treatment-to-seek-and-destroy-tumours-could-avoid-chemotherapy-2/

 

 

 

Edited by member 07 Jun 2019 at 03:08  | Reason: Not specified

User
Posted 07 Jun 2019 at 08:21

I was at the London Clinic yesterday to undertake my latest PSMA PET San and they confirmed thay have just started providing the Lutetium 177 treatment ( at a cost mind you) and the guys who administer the treatment were extremely positive about it. Apparently the treatment is given on a day visit without need for an overnight stay in hospital

As a side note the chemical components for the PSMA PET Scan are now provided by UCL and are much improved apparently. I will see how much improved they are when I get my results on Tuesday

Good luck all

Dave

Edited by member 07 Jun 2019 at 08:22  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 07 Jun 2019 at 08:47

Dave, that's interesting.

If you get the opportunity to ask when you go back, it would be interesting to hear if they are thinking of (or even heard of) using C11 Carbon Acetate PET scans in the future, which is supposed to be significantly better than PSMA, particularly at PSA levels < 2. I haven't seen it mentioned anywhere in the UK.

Given Carbon Acetate is more "prostate specific" than PSMA (it hooks onto a fatty acid in prostate cells), it would seem to me to be a better agent for carrying Lutetium 177, if they can be chemically combined, possibly avoiding the salivary gland issues. It might make the use of Actinium 255 more viable too (Actinium 255 is better than Lutetium 177 for killing prostate cells, but when carried by PSMA, it's also better at completely destroying salivary glands).

User
Posted 07 Jun 2019 at 10:03

Originally Posted by: Online Community Member

As a side note the chemical components for the PSMA PET Scan are now provided by UCL and are much improved apparently. 

I spoke to a radiographer at the Paul Strickland scanner centre this week and she said all Gallium-68 isotope tracers for PET-PSMA scans in Britain come from a sole supplier. So if UCH is now producing the tracer as well, that must be good news.

I wonder if the price will now drop from £2600 to £260, like in India? 😂😂😂

Cheers, John.

https://www.petscaninmumbai.com/psma-pet-ct-scan/

 

 

Edited by member 07 Jun 2019 at 10:32  | Reason: Not specified

User
Posted 09 Jun 2019 at 18:10

Hi Roy,

 

He had advanced cancer which had spread to his bone including leg, sternum, collarbone and most recently eye socket. I believe his count last time was over 500 (but I don’t go with him to any appointments so I maybe wrong!) 

I saw him today and the treatment was well received as you say so far no adverse effects. He is very weak but he has been like this for sometime. 

 

I think he is very positive about the treatment, but as he is so weak on his legs we are in the process of adapting the house to accommodate him. Talking to people regarding stair lifts etc. 

 

Thank you lucie 

User
Posted 09 Jun 2019 at 18:11

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

the hospital have advised him not to use public transport to get home they live over an hour from the hospital on the tube due to his risk to others especially the old / young.

If he puts on a radiation protection suit with warning symbols on it, I'm sure he'll get the carriage all to himself...😀

 

 

 

 

now that would be hilarious!!! I coulD imagine the papers. Strange man in hazard suit clears the underground!!

User
Posted 09 Jun 2019 at 19:54

Hi Lucie

thanks for the update, and pleased the treatment is being tolerated quite well. Did you see the PSMA scan which should have lit the areas of spread like a Xmas tree and where the treatment will target.

looking forward to your updates.

Please send my best wishes to your step father and hopes for a good outcome

all the best

Roy

 

User
Posted 09 Jun 2019 at 20:00

Hi Roy,

 

I didn’t see the PSMA scan but I will ask my mother what it looked like!

 

I appreciate your good wishes and will pass them along. 

 

Thanks 

User
Posted 25 Jun 2019 at 06:28

Allow another 10 years for Lu117 to be available on the NHS.  However there is a stage 3 trial starting imminently at UCLH.  It was supposed to start last month but has been delayed.  To qualify you need to have done chemo and all the hormone therapies. So I think they are still recruiting as of June 2019

User
Posted 25 Jun 2019 at 07:00

I've been to see Genesis Care and they have a pretty good set up with plenty of experience.  I gather they are in negotiations with BUPA so hopefully it will be part of health insurance in the future.  For the moment it is quite expensive at £12,000 per shot and the 68 Gallium PSMA scan at £2,500.  However on the latter the good news is that the scan is once again available on the NHS.  (It had been stopped for  cost saving from Dec 2018 technical grounds cited- that it had not gone through certain 'trials' to varify its safety - but the radio oncologists protested and the administration seem to have backed down)  This test has been used for glioblastomas in the UK for over 15 years - before it was used for prostate. 

Edited by member 25 Jun 2019 at 07:02  | Reason: Not specified

User
Posted 25 Jun 2019 at 08:58

Originally Posted by: Online Community Member

.............for the moment it is quite expensive at £12,000 per shot and the 68 Gallium PSMA scan at £2,500.  However on the latter the good news is that the scan is once again available on the NHS. 

When and where did the Gallium-68 PSMA PET-CT scan become available on the NHS?

Cheers, John.

User
Posted 25 Jun 2019 at 09:25

John, i am not going to list all the hospitals where the scan is available - it would mean phoning round every trust in the country!  UCLH does it and so do some hospitals that treat Glioblastomas.  It has been available for many years (for Glioblastomas) and more recently for prostate if your radio oncologist consultant could swing it.  It was stopped in December 2018 but it is being allowed again now. I don’t know the state of all trusts in the country. 

User
Posted 25 Jun 2019 at 11:59

I understand that only a very few NHS hospitals have the facilities for G68 PSMA PET-CT scanning.

This trial shows how effective it is. I read that is so much more accurate that Choline scans in one country have been abandoned altogether!

http://www.practiceupdate.com/content/assessment-of-68ga-psma-11-pet-accuracy-in-localizing-recurrent-prostate-cancer/81710

In case you can’t access the results of the trial above, (it may be subscription only), the summary of its conclusions are here:

TAKE-HOME MESSAGE

– Jeffrey M. Wiisanen, MD

 Cheers, John.

Edited by member 25 Jun 2019 at 13:27  | Reason: Not specified

User
Posted 24 Aug 2019 at 16:27

So, I saw my NHS consultant at a hospital in Slough this week.  I mentioned to her that forum members had been talking about Lutetium treatment at Genesis Care in Windsor and she confirmed that she is, indeed, one of the consultants leading on that particular treatment.  From talking to her, I think Windsor is probably a bit more expensive than Finland.  She was aware that men were travelling to Finland for the treatment.  One of the main challenges with the treatment was that some men get a few months' benefit from it and yet there are others who seem to get much longer.  They are trying to understand why that is the case.  I asked when, if ever, it would be available on the NHS.  She said the NHS would want lots more data and it wouldn't be on the agenda for at least 5 years at the very earliest.

She told me she hoped I would never need to consider the treatment.  I asked her for a discount if I ever did.  She laughed.

If I did need this treatment, I would have every confidence in her abilities as an oncologist, and the Windsor treatment centre is 10 minutes' drive away.

Ulsterman

 
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