After Hormone Therapy

I feel good thanks Phil.

Doing lots of exercise - mainly on my treadmill and feel fit.

I do get tired in the early evening but maybe that’s an age thing and I do get out of bed around 5am every morning - so not entirely surprising.

Still waiting on my testosterone score - I’m guessing it’s still low because my previously hairy legs only have a little bit of hair now. So maybe the effects of HT are either permanent or slow to reverse.

Not sure but at this stage I’m not complaining.

Glad your feeling ok and will be interesting to hear your T score.

Mine was 0.7 last time - I was hoping for more 🤣🤣. Nurse wasn’t surprised and said it could take a year, and won’t measure T level for another 6 months. I asked her to add in 3 monthly PSA tests which she did.

Will be good to get the full Libido back etc. etc.....😉

Also feel that the HT has really affected my mind and I’d like that back too. Although as many have pointed out we are never the same after this journey.

Good luck on Wednesday.

Phil

Thanks Phil.

Yes at this time I am quite relaxed about my Pca.

I’m more focussed on the Coronavirus crisis for the time being.

Welcome Julian. 
Sounds like the HT hit you hard physically. I was very lucky with the physical issues but had a hard time mentally. My last injection October ‘19 so still leaving my system for a little while. Hoping my counsellor will start seeing people soon as I am missing the sessions.

Next PSA & T test in 2 weeks and telephone with specialist nurse or consultant in 3 weeks......🤞

Always a worrying time, especially as one of my close friends Seed Brachy hasn’t worked and he’s looking at a life on HT now...

Take care and chin up 👍

Phil

Best of luck Pete. Always a nervous time and I suppose always will be .......

Phil

Hi Julian. Everyone seems to react differently to the Hormone Therapy , plus it’s also the fall-out of being diagnosed with a possible life limiting disease. 
I feel I am only just starting to get my head back 7 months after it should have started wearing off. 
I have no idea if I personally suffered more than ‘normal’ due to having some childhood issues rear their ugly head, but I certainly don’t want to go back on it. Fingers crossed I won’t have to but if the PCa comes back I suspect my family will want me to fight back with all the weapons at my disposal.

There are a few on this forum who have fought a brave battle with as little intervention as possible. As with most decisions in life no one knows what the outcomes would be had one chosen a different path.

Only 7 days till my next PSA and T tests ...and getting nervous. Then a telephone appointment with consultant or nurse. Much prefer a face to face but I suspect they’re not doing those now.

Phil

I guess he is just covering his derriere.

He did a similar thing a couple of years ago when I had a bad back.

Good to hear your T results are progressing well Phil and that your Consultant is ok with your PSA result.  Hope you can relax a little for the next six months.  Sounds like you’re doing well managing to reduce your anti depressant dose.  Good luck going forward 😃

Keith will have his PSA test soon and then a phone consultation on the 15th October.  We are starting to feel anxious now as this will be his first PSA since completing his RT.  Hoping it’s good news.  He has had a lot of aches and pains, especially in his right hip, hopefully just the effects of the ongoing HT.  

All the best,

Angex 

Good news on your results Phil.

Keep hanging in there.

Hi Pete,

Yes it’s very scary, every ache and pain we tend to think is related to the PCa.  When Keith was first diagnosed in August 2019 his bone scan revealed a lesion on the right hip.  Following the Team meeting his Oncologist decided to do chemo treatment first, which took place in March 2020.  On completion of 6 chemo sessions, and a further bone scan, his Oncologist was of the opinion, and the Team agreed, that as they could see no change to the lesion they were ALMOST certain it was not a met.  Keith then had RT to the prostate and now awaits a PSA test and consultation with Onco on 15th October.  So early days into this disease in the scheme of things, but we are still very suspicious about the hip!!  Holding our breath for the PSA result.  We are keeping our fingers crossed that he won’t have to stay on HT for life, he’s experienced twelve months of it and taken all the side effects in his stride and I think he’s been amazing.

Your latest results are great 7 years on and I can imagine how happy you are after all you’ve been through, really pleased for you.  Hope your GP can arrange your scans soon so you can have further peace of mind and keep moving forward. Like you, Keith keeps active and always has some sort of project on the go so we keep saying it’s only muscle aches and advancing age.

We’re all fighting this disease as best we can and trying to keep positive.

Good luck to all xx

Thanks Ange and Pete.

Fingers crossed for Keith’s PSA and consultation in October. As you say there’s always the worry that any ache and pain is PCa related.  
My consultant wants to see me in 4 months which I thought was odd but it will coincide with my year from when the HT should have started wearing off. ( last injection October’19).

Phil

Mine is only 9.2 and that is 18 months after the end of HT.

It falls within the range though and was described as normal.

Not that there is anything remotely normal about all this.

Edited by member 29 Sep 2020 at 15:01  | Reason: Not specified

Your normal range doesn't agree with the lab my tests go to, which lists the NHS normal as 6.7 - 25.7 nmol/L, and yes, it drops linearly from age 25.

The tests for the GnRH Agonists that I've looked at regard ≤1.2 as castrate level, although all the actual measurements I've seen from people I know on GnRH Agonists are <0.5 (mine is 0.2).

Personally, at the moment I just want to get back to as close to normal again as I can. I can’t worry about the PCa coming back as it would consume my mind and mess up what future I have.

The HT was a journey that’s for sure.

But saying that I really do not want to go back on - I don’t know if I could deal with it all again...

Lets hope that the scientists can find a better way to deal with this dreadful disease in the future.

Take care

Phil

Edited by member 30 Sep 2020 at 21:46  | Reason: Not specified

Hi gcf1942. You are on a completely different pathway to me so have no experience or knowledge of the chemo treatment. Hopefully someone will see and offer their experience and knowledge.

Good luck

Phil

His profile says doubling time 11.4, but does not specify weeks or months.

Thanks Chris

Edited by member 12 Oct 2020 at 19:32  | Reason: Not specified

Thank you for all your support guys, and gals. Much appreciated.

Firstly, she never mentioned what we will do if the PSA goes up again. It wasn’t a consultant it was some kind of support nurse. I was expecting better news or I would have thought the consultant would have spoken to me ...

I suspect it means more HT ??? She didn’t seem overly concerned whereas my head just started spinning and didn’t think to ask about future treatments. 

The water infection test was sent away but to be fair it was getting slightly better by then. I will try the Tamsulosin for a month and see what happens.

With regard to the PSA I just have to wait and hope it doesn’t go up anymore ....

I must admit when it went to 1.2 I got worried  as I read most of those that had RT/Brachy had their PSA stay fairly low.

Must try not to worry now , easier said than done .....

Forgot to mention best of luck Chris, hope the Bicalutimide and Decapeptyl both work well, and Pete good luck with your PSA test in March. 

Take care all

Phil

Edited by member 05 Feb 2021 at 10:21  | Reason: Not specified