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Where now?

Posted 22 Jan 2019 at 19:36

Time for my own thread I think...

There's a timeline in my bio, but here's a quick precis: Initial GP visit 30 Dec 2014 aged 56 with sudden severe pain in groin and lower back, PSA was 41.8. Diagnosed Feb 2015 with Advanced PCa Gleason 4+3, T4 N0 M1, mets in lower lumbar L2. Started Triptorelin/Decapeptyl HT followed by Docetaxel 'early' chemo. PSA dropped and remained stable <1 through to end of 2016 then rose steadily in 2017. Had RT to L2 to reduce spine met Feb 2018. Started on Abiraterone with the IPATential150 trial in April 2018, and PSA dropped to 0.44. Sadly it started rising again in September reaching 2.6 beginning of January this year and was signed off the trial due to disease progression and swelling at L2. Good news is that organs and lymph are all clear.

So where now?

Currently I'm waiting for the referral back to my local hospital for more RT to L2 to knock that back again. I'm also going to get more chemo, Cabazitaxel/Jevtana there at some point. Anyone had that? How does it compare to Docetaxel?

Another possibility is continuation of Abiraterone or maybe try Enzalutamide. I can have either as my previous Abiraterone was funded by the trial, not the NHS. Thing is, what to choose? - Is the PSA rise due to the Abi failing or just general progression - Would Enzo work if Abi is failing?


Posted 22 Jan 2019 at 23:24
Has your primary tumour been irradiated?? There is evidence that treating the mother ship in advanced cases is beneficial if there are limited Mets..
Posted 23 Jan 2019 at 00:15

If the disease has progressed then I think they will tell you that abi has failed. All the trial data showed that once abi fails, enza will also fail. However, they do work in different ways so if you can get enza, it must be worth a shot?

We have a few men that have had cabz with some success - it usually seems to be tolerated quite well. What about a good old fashioned oestrogen like Stilboestrol?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Posted 23 Jan 2019 at 11:01

Originally Posted by: Online Community Member
Has your primary tumour been irradiated?? There is evidence that treating the mother ship in advanced cases is beneficial if there are limited Mets..

No, told at the outset it wasn't being offered. I've only had RT to the spine for pain relief. 


Thanks Lyn, another question to ask when I get to see them

Edited by member 23 Jan 2019 at 11:03  | Reason: Not specified

Posted 31 Jan 2019 at 10:27
Well I'm still waiting to hear from my local hospital about my 'urgent' RT and continuation of systemic treatment. It's now 4 weeks since I came off the trial, 4 weeks without any treatment... I've called them and there's nothing, feeling pretty abandoned tbh. Trying to be positive, Is a month much in the grand scheme of things?
Posted 31 Jan 2019 at 11:03
Sorry to hear that. Have you checked with the trials people that they have sent a referral? Did you have a named nurse at your local hospital that you could contact to find out what is going on or otherwise your GP. Your GP should have been sent a letter so say what is going on which you also should be copied into. For my husband the trials team had to continue blood tests until they had done the referral as it was liver toxicity from a drug taken under them so we only had about a month without seeing anybody but in our case it was the same hospital, Do hope you hear soon.
Posted 31 Jan 2019 at 11:21
Yes, I have a copy of the referral letter and the one to my GP. I have called my previous specialist nurse contact but there was nothing showing.
Posted 31 Jan 2019 at 18:44

Hi Nevyn

I had a horrible experience trying to get the attention of the specialist team over xmas. i do have Hospice support and that helps. Are you in contact with your local hospice, they are brilliant at getting things moving as they know all the people and can often help.

good luck


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