Hi everyone.
Me and my partner have recently joined this community in the past couple days and have been reading through a lot of posts made. We've found a lot of helpful things on here already. We would just like to hear some of your treatment options given to you and see how each case has been. As our case seems to have come to a stop.
I'll give a brief overview of everything so far.
So he who is 52 woke one morning in late September 2024 and didn't have much movement or feel in his legs, this took a trip to the hospital and was diagnosed with advanced prostate cancer. His PSA was over 500 and had spread to his bones (this had caused several fractures in his spine causing the loss of movement) and lymph nodes. After a week or so his body from the waist down was numb with no movement at all. He was told he would never regain his movement back or walk again.
He was given radiation straight away in October and started on hormone injections (Degarelix) once every 4 weeks. He was then started on Enzalutamide (Xtandi) in December. His PSA came down on this treatment and was down to 0.25 from December. Since then starting in around February his feeling and movement very slowly started to come back. He was able to wiggle his toes then his legs and now he has full movement back and is learning to walk while aided (re-building the muscles and strength he had lost).
From May his PSA levels started to rise again and this month we are currently up to 29 PSA. He was told it had spread a little more to his ribs and hips and potentially a small part of his left lung, although they said they will not do a biopsy on this to confirm. His Oncologist has told him to stop taking Xtandi as he said 'they have clearly stopped working'. This is fine and we thought we would just move onto the next drug to try. The onco did the DNA testing to see if he was suited to one of the other drugs but it wasn't a match. The onco has said the next step is chemo. He has never mentioned any other treatment that could be possible or why anything else wouldn't work. He never mentioned any drug trials. He said he is looking at around 12 months left and if he decides to go for chemo this would only extend this by a 'couple months'. Obviously this was a huge shock to us.
Looking through the macmillan website and the long lists of different hormone drugs / treatment we thought we would put a post on to see what other drugs people have tried. We are going to accept the chemo but we want to ask the onco about other options available as the way he was talking was take it or leave it and let the cancer take over. Surely with all the medication out there he can't just be tried on one drug and then be told that's it.
If we didn't know the PSA results we would think all things were going great. He is healthy, happy and starting to walk again.
Any advice and your treatment stories would be great so we know where to start when we speak to his onco. We want to know if this is normal or if we have a lazy onco who has given up.
Many thanks
I just wanted to say hello, you guys have fairly been through it, complete understatement! We are new to this, only recently diagnosed with advanced metastatic PC, spread to many bones. My partner was started on degarelix 3 weeks ago, we have first Oncology appt end of August and they are planning to start Paul on Abireratone alongside the degarelix, its a hormone too but works differently and at the moment its only available on prescription in Scotland, in England for certain cases but not sure what the "criteria" is....I think its similar to the Enzalutamide, not sure, the meds side of things is still very alien to me.
My partner was also due to start chemo, however, they have taken this off the table for now.
Your story is amazing, to be walking again after being told that would be unlikely is a sign of the strength and determination your partner has, stay strong and keep asking your team "what now, what next", consider another opinion....i wish you both all the very best 
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Hello Lorraine (BW)
Great post - thank you for your continued support around the Community.
Hello GreenDrone Here's a link to Cancer Research UK and their Clinical Trials. When the page opens if you click on trials "open" you will see there are about 280 - I haven't checked to see if any are suitable in your case:
Cancer Research UK - Clinical Trials.
I hope this helps.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
