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immunotherapy help/advice

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User
Posted 02 Dec 2023 at 22:01

I was diagnosed with stage 4/terminal cancer in September 2018, over 5 years ago, at the time my oncologist gave me 3-4 years with luck and treatment, and according to cancer research uk, only 12% survive 5 years with stage 4 prostate cancer, so i am well past my sell by date.

I have had Chemo and radiotherapy, and am currently on monthly hormone injection, plus pain management from my local hospice, where i go twice a month, due to my PSA slowly creeping back up, i have recently been put on further hormone tablets, this has got me worried that treatment is slowly starting to stop working, and as such i have been looking for further treatment available.

I have been looking at immunotherapy and in particular Lu-PSMA treatment, does anyone have any experience or advice with this treatment? is it Available for NHS patients? and if anyone has any advice on how to apply for trials or to be referred to another hospital such as the Royal Marsden? i have asked my oncologist previously to be referred and he refused?

 

Any advice or help on any of the above, even Royal Marsden, would be appreciated, as feel my time is running out and every day is precious.

 

Many Thanks

 

 

 

 

 

 

 

 

 

 

User
Posted 03 Dec 2023 at 00:27

If you can pay it's pretty easy to get a second option from the Royal Marsden, just apply through their web site:

https://www.royalmarsden.nhs.uk/private-care/second-opinion

 

 

 

User
Posted 03 Dec 2023 at 02:12
It makes sense to me to find out any options you might be suitable for in case needed.

We have a very few members who have had Lutetium Treatment but they rarely post and one has not done so for a very long time. If I correctly recall he had his costly treatment in Denmark or Finland.

Suggest you try the search facility although it can be difficult to get to find what you want.

The Royal Marsden will know more about the treatment and where it is available as I know they were instrumental in directing a patient to a facility having first done a PSMA scan to establish that the patient expressed sufficient PSMA to make the treatment viable.

Barry
User
Posted 03 Dec 2023 at 11:37

Lu-PSMA isn't available on the NHS, and NICE recently revisited that and retained that ruling. It is available privately in the UK, but it's very expensive. There have been various trials too in the past. I've come across two people who did it on a trial, but it didn't work for either of them sadly (which is certainly not to say it isn't effective in some cases). I think there are some trials of using it earlier in the treatment pathway, with the hope it might be more effective earlier on.

I know Mount Vernon Cancer Centre has an immunotherapy research department which you could try approaching if you're anywhere near there (Rickmansworth) and they're probably sufficiently informal that you could have a chat with them, but I would imagine the likes of Royal Marsden or UCLH or Imperial might have larger immunotherapy centres.

Edited by member 03 Dec 2023 at 11:39  | Reason: Not specified

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User
Posted 03 Dec 2023 at 00:27

If you can pay it's pretty easy to get a second option from the Royal Marsden, just apply through their web site:

https://www.royalmarsden.nhs.uk/private-care/second-opinion

 

 

 

User
Posted 03 Dec 2023 at 02:12
It makes sense to me to find out any options you might be suitable for in case needed.

We have a very few members who have had Lutetium Treatment but they rarely post and one has not done so for a very long time. If I correctly recall he had his costly treatment in Denmark or Finland.

Suggest you try the search facility although it can be difficult to get to find what you want.

The Royal Marsden will know more about the treatment and where it is available as I know they were instrumental in directing a patient to a facility having first done a PSMA scan to establish that the patient expressed sufficient PSMA to make the treatment viable.

Barry
User
Posted 03 Dec 2023 at 08:29

Many Thanks for your helpful replies.

I will definitely explore the second opinion route with the marsden, to be honest i have become a little frustrated with my treatment from my oncologist, i used to have a meeting with him and blood tests every 3 months at the start of my diagnosis, now i am aware covid changed many things, but in the last 3 years i can honestly say i have only seen my oncologist face to face on 1 occasion, and that was only because i demanded it, i have also had only 1 scan in that time, again because i demanded it.

Since then it has been a blood test and a very quick phone call from my oncologist to inform me of my results every 4 months, as i said i have enquired about being referred, this was refused, i have enquired about trials, again dismissed stating i am not at that stage yet and have more treatment options available, i am beginning to struggle, have noticed my mobility getting worse and feel i am starting to fade, doing less and less, am i being slightly paranoid? or is this similar to others getting treatment for stage 4?

I am now also attending the hospice for treatment including calcium infusion for bone pain and have also been prescribed Morphine for my pain, while i was at first reluctant to take the morphine, concerned i will be needing this later in my journey and become slightly immune to it, however i have surprisingly found i needed to take it, and on a more regular basis, in particular at night to help me sleep, and even during the night when the pain has woke me.

This has caused me to start searching other options, and to question my treatment, and also wonder why they leave trials as the last option? in my case anyway.

 

User
Posted 03 Dec 2023 at 11:37

Lu-PSMA isn't available on the NHS, and NICE recently revisited that and retained that ruling. It is available privately in the UK, but it's very expensive. There have been various trials too in the past. I've come across two people who did it on a trial, but it didn't work for either of them sadly (which is certainly not to say it isn't effective in some cases). I think there are some trials of using it earlier in the treatment pathway, with the hope it might be more effective earlier on.

I know Mount Vernon Cancer Centre has an immunotherapy research department which you could try approaching if you're anywhere near there (Rickmansworth) and they're probably sufficiently informal that you could have a chat with them, but I would imagine the likes of Royal Marsden or UCLH or Imperial might have larger immunotherapy centres.

Edited by member 03 Dec 2023 at 11:39  | Reason: Not specified

 
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