I'm new here and I'm 66 years old living in the UK
I have Gleason 8 Stage 4 cancer that has spread to bones and lymphnodes. 6 months of Enzalutamide worked well but then my PSA started to rise again and has now settled around 60. After 8 cycles of Docetaxel I'm seeing my oncologist to consider the next steps.
So I wondered what other patients thought would be the logical next step to deal with this disease? Are there any new UK trials? I hope this is not the end of the road! Generally I'm coping and, in the circumstances, feel well.
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Finlay66
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The guy I follow on Twitter was prostate cancer patient 1 ( he posted pictures) according so his thread . London of course but it’s coming ( hormone resistant of course).
Hi. I think LU177 has not been approved by NICE as yet for prescribing via the NHS, (decision pending 2023) so its either getting into a trial (your consultant should know whats available and if you are eligible ) or paying. Yes, the Marsden offer this tx now it seems - but I guess its pretty costly. You might also have to pay for the necessary specialist scans as well. But its worth at least contacting them, if its decided that this is the best next step for you. There is at least one other private centre that does it in the UK and several in Europe. Xofigo is available on the NHS, though might not be available at your local hospital (depending where you are?) You could have a chat with the specialist nurses at Prostate Cancer UK - they are really helpful and usually know whats going on with NHS provision. 0800 074 8383. I see that TA recommends trying a re-challenge with enza - again you might have a problem with this via NHS funding rules (which are pretty restrictive, for some reason once you have stopped one of these for more than a certain number of weeks, they sometimes wont re-prescribe!) but its certainly worth asking. And if you had to pay, its a lot cheaper than LU177. Good luck from another Brit.
Your Bio looks remarkably similar to mine except you're about year ahead of me. I assume you were tested for the AMPLITUDE trial as was I and I too didn't qualify due to having no relevant gene mutations. You should get some good suggestions from the knowledge base on here - there are lots of treatment options still out there for you to try. It's definitely not the end of the road!
Thank you. Yes I was tested for the Amplitude trail in August/September 2021. Your advice is good to hear and l'm trying to be as well informed as possible for when I meet my Oncologist in the next few days.
Some really good advice. UK here as well. You can pay for a second opinion at The Royal Marsden for £495. There is a link if you Google it.
If looking at LU177 I'm not sure if you have to pay or not at The Marsden. Just keep in mind that it is my understanding that if you do go down the LU177 route that you need a FDG-PET scan showing a low MTV value, below 200 MTV and PSMA-PET scan with a high, SUV greater than 9 value. However, please discuss with your consultant. The hospital's in Germany are much more experienced if you have to pay in the UK.
Good luck
luPSMA treatment is much cheaper in New Dehli, 5500 USD
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