Pace Nodes Trial

Hello NoahsArk and Roy68  -  Another warm welcome to the online Community from me - sorry to see you here but we aren't a bad bunch.

Although I am not on the trial - I have been on the Hormone/ Radiotherapy path for 27 months so am used to dealing with side effects - you can read my journey by clicking on my avatar.

Please feel free to join in any conversations and ask anything - however trivial - you will get answers.

Best wishes - Brian.

Wow Millibob you’ve been through the mincer!
Good to see you’ve remained so positive ( I’m guessing that’s key ) & come out the other end feeling good.

Hey Millibob, 

Ive just caught up with your profile. Your PSA is fantastic considering where you were originally. When does your HT end? 

L

Hello NoahsArk and BarryW 

Apart from the odd "Dark Day" after walking out of the MDT meeting I said to Mrs Millibob - "I am going to beat this bastard" and with her help, a slice of dark humour, a very positive attitude and this Community (there are people still here who helped me at the start) that's where I am today.

PSA 0.33 (still going down but "nadir" reading in June) and one more 6 month HT injection due in June and that's 3 years on HT.

I consider myself a "lucky boy" as with a PSA of 182 it should have gone "walkabout" and with starting Hormone Therapy when I was in Hospital - that's why I have those 2 magic words to aim for - "Curative Pathway".

Best wishes - Brian.

Hi Roy68,

Welcome to the group.  It was interesting to read how you got on with the Pace Nodes trial & hope the side effects soon start to ease.

Re the sting you mentioned after peeing, I found that I experienced this occasionally after the standard 20 sessions of RT over 4 weeks & think it happened when I hadn't been drinking enough water during the day.  Making sure I drink plenty of plain water in addition to regular tea's etc seems to have done the trick & stopped it happening.

All the best,

Brian

Thanks Brian,

I think that may be the case with me. Need to monitor my intake a little more carefully. Its not all the time so maybe that's it. General side effects are some days better than others but early days yet. It's the hormones that got me really. Mood swings. It will all pass I am sure in the fullness of time. 

Take care,

Roy

Probably something & nothing but my GP - in my annual review - did some blood tests & for some reason included my PSA.

My PSA last December - after 5 months hormone therapy - was 0.13.

My latest test - taken yesterday after 4 of the 5 radiotherapy sessions ( final session was earlier today ) has gone up to 0.49. Still a low number but wouldn’t have expected it to quadruple in 3 months whilst still taking hormone therapy?

Am I over reacting ( I do tend to fret about these things)?

Hi NoahsArk.

Don't panic. Radiotherapy can cause an inflammation of the prostate which can result a temporary increase in PSA during treatment. The post radiotherapy PSA are the more reliable numbers which should decline for the next 18 months or more but will not drop to an undetectable level.

Thank you so much!!

Hi NoahsArk.

I thought I would give you an update. You said you were about six days behind me in treatment so should of completed treatment by now. 

I completed mine on the 21st. I had the normal mildish side effect till Monday aft/eve when started to feel worse. Tuesday and Wednesday really not good but no worse than a bad bout of dicky tummy. Pleased to say it passed quit quickly and now bowel movement reasonably regularly and urinating without to much of a problem. little sting first thing in the morning. No traces of blood that I can see. Was only trace amount in mucus anyway.

All in all feeling a lot better and on the road only a few days ahead of you. Hope you are okay.

Just the hormones to deal with now. OH deep joy!!!!!!

Take care.

Roy