Update - in the thick of it now

Good luck with the treatment, sounds like you're really in full swing now. We're following identical treatment paths, and I was too diagnosed on my birthday!

Getting the bladder right is tricky, I think I took the entire treatment to get it right.

Hope the RT is uneventful 

G

Thanks- wishing you all the best too.

Hi Bmac,

We are on very similar pathways, I'm just a few weeks ahead of you, so happy to keep in touch, compare notes and share my experience on RT and Abi/Pred.

I did ok on RT until last 3 days of treatment when the fatigue kicked in big time. This was as predicted and (also as predicted, got heavier in the 2 weeks after finishing. I am now 16 days after and just beginning to get my energy back. I overdid it in the garden last week, feeling strong, and overdid it taking 2 days to recover. I found 30m naps was like pressing a reset button!

After a real rigmarole getting bladder fill right (too empty, despite 2.5l water, then too full...) Delays of up to 2h did not help..I finally cracked it on the last 3 days. I arrived full, because you can lose your place in the Q if too empty..annoying. I was able to master emptying just the right amount (half or full cup) before untrasound and was then taken immediately. Worked for me, but we're all different..

Zero bowel problems but after RT I was peeing up to 5x in night and 10x during the day. They prescribed Tamsulosin which I take at 6pm. Since then 1-2x during night and 8x during day. Will stay on for 2-3 months which is when they expect a near full RT recovery.

Have been on Abi/Pred for a month now. I pushed for this as great results shown on 1st line use on top of my orgovyx. I was first in Maidstone to get onto this when OK'd in NHS England on 16th Jan.. It was very expensive privately. I am very lucky to avoid Hot Flushes..just tiny 'flushettes' every day at 8am. It's hard to tell whether the fatigue and brain fog is the standard HT or any extra due to Abi Pred, especially with all the RT effects going on..I suspect minimal additional from the abi but wary about the predni, as I feel weird (like drunk) for a few hours after the steroid. I have switched it from breakfast to after lunch (abi at 07.30) So far this gives me a much better QoL in the mornings and I can get stuff done in the house and garden.

Hope this helps, let's keep in touch, as we are now 'friends' I'm happy to have a chat any time.

Stay strong

David

• Update: 18 RT Sessions completed, 19 to go. Latest PSA 0.16, slight reduction since last month. Not sure if Abiraterone or prednisalone causing side effects but  feeling a bit wonky after the prednisalone so taking it later in day to see if any changes.Slight hiccup with bladder water levels, apparently planning scan gave wrong levels and was asked to increase from 250 ml to 380 ml, which caused some discomfort and after some discussion it has been agred to reduce to 280ml. Hopefully nothing negative from this will result but some relief from that and knowing I’ve hit the half way mark with RT also some relief.