After Hormone Therapy

User

Posted 23 Jul 2021 at 15:25

Phil it’s a strange one. Outwardly no one would guess I was ill at all. Only 54 , 12 1/2 stone , quite well muscled , problems with my knees only. My back better than ever due targeted RT and now HT working.

All my other man-bits are still fine but I’d be a liar if I said my libido wasn’t fading. It is and it bothers me. And when we do I can’t orgasm mostly which is distressing.

Some days I’m on top of the world , busy and fixing up home and as many holidays as we can etc. Other days I just sit in the garden and inwardly weep as I’m not ready to die by a long way , but surely edging nearer.

Sometimes when I’m happiest the cloud comes heavier , because I know it can’t last. I’m sure you get it. Keep well and in touch

User

Posted 26 Jul 2021 at 11:00

Chris, I really understand the mental anguish. I’m still not sure how I’m gonna be after the Zoladex starts working. First injection 3rd August…….
I’ve finished counselling now and hoping I don’t need to go back. I’ve read the stories on here of the many very brave souls who went through wretched times towards the end and I’m not sure how I would deal with that. Just gotta keep busy and my mind off that stuff.
Just sold our home of 38 years and living with MiL till we can move in our new house in mid August. But first, off to Jersey for our sons wedding ( they got married last year but they are re-doing it with all the guests this time) so plenty to think about for a while.

Take care buddy 👍 Nobody said it’d be easy 🤦‍♀️

Phil

User

Posted 26 Jul 2021 at 12:38

Hope the Zoladex treatment works well for you Phil. Enjoy your Son’s Wedding celebrations in Jersey with your family and friends.

You’ve certainly got a lot to focus on with your house move too. Keep looking forward and enjoy these precious times.

With best wishes,

Ange & Keith x

User

Posted 26 Jul 2021 at 13:24

Thank you Ange. Yes plenty of things to keep me occupied.

Now things are easing up Covid wise I think I need to start planning our next big holiday 🤔.

Hope all is running smoothly for you and Keith?

Phil

User

Posted 26 Jul 2021 at 14:41

Aww congratulations to your son - have a great time in Jersey.

You don't really need to know this yet (and hopefully won't need to know for many years) but not all PCa deaths are terrible - some men just slip gently away when the time comes.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Jul 2021 at 14:54

Thank you 👍.

Yep, like all of us hoping for a few years yet and then quietly slip away …..

And as a friend of mine said there’s always the possibility of some new treatment coming along .

Phil

User

Posted 09 Sep 2021 at 16:24

Just a very short update: Zoladex started 5 weeks ago and unlike the Prostap I can feel it working already. I am definitely feeling more tired and unfortunately I can feel the libido slipping away already. I will have the next one in October and see my consultant on 28th October . If I still feel the same I may ask about going back onto Prostap. I was really lucky with Prostap with respect to physical side effects but it did affect me quite badly mentally but I am getting mood swings and a bit depressed with the Zoladex.

Anybody else had the chance to compare both Prostap and Zoladex ?

Phil

User

Posted 09 Sep 2021 at 23:00

Hi Phil,

Please see my previous post where I was switched from Zoladex to Prostap by GP for their admin purposes. I reacted poorly and arranged to switch back to Zoladex.

I have to say it is now about a month since the return to the 3-monthly Zoladex and I feel much better!!

I don’t think it is psychosomatic!!

I suppose it shows how we all react differently to medication.

Hope it improves for you whichever one you end up on.

Chris

User

Posted 10 Sep 2021 at 10:12

Hi Chris . Thanks for your reply. I’m going to have the next Zoladex and see how it goes. But I feel like I will likely ask for the change. I never lost my libido completely with the Prostap but with the Zoladex I can almost feel it draining away.

I saw in your previous post you asked about duration of HT. I asked my consultant and he said that he wanted me to stay on it for 2 years as it can wipe out any micro mets left behind. Didn’t actually work for me and not sure if that’s even possible.

Good luck with whichever duration you/they decide on.

Phil

User

Posted 16 Sep 2021 at 16:08

And here we are again 6 months later.

3.5 years on from Salvage Radiotherapy and 2.5 years on from ending Hormone Therapy.

Still firmly in remission thank goodness with PSA at <0.02 and Testosterone up a bit to 10.1.

Looking good but I never feel that I am in the clear - I am all too aware that this thing could come back to bite me.

Always in the back of my mind and I can never forget about it.

Edited by member 16 Sep 2021 at 16:10 | Reason: Not specified

User

Posted 16 Sep 2021 at 16:17

Brilliant news Pete. 👍. Long may it continue. It’s so good to hear the treatments do work for most people, especially for the newly diagnosed.

I’m hoping they will come up with something new to deal with the mets in my lymph nodes 😬 🙏

Good luck for the future Pete.

Phil

User

Posted 16 Sep 2021 at 16:24

Excellent result Pete. Yes you're right PCa is always at the back of the mind.

I am wondering if this could be useful for people post treatment?

https://www.bbc.co.uk/news/health-58544874

Particularly for people who have had RT but not had surgery. We still have healthy prostate cells producing PSA, what we don't know is if we have cancerous prostate cells producing PSA. Though the intention seems to be to use this for pre treatment investigation, my thought is that this test would detect the presence of post treatment tumours so we would have a better idea of whether cancer remains.

Dave

User

Posted 17 Sep 2021 at 16:00

Great news Pete.

Ido4

User

Posted 01 Nov 2021 at 10:48

Update: Just had my 2nd Zoladex implant. All went well and not even a bruise.

Saw my consultant on 28th October, face to face . My PSA has gone down to 1.0 so Zoladex working fast. I definitely get a bit more fatigued now and think I’m putting a bit of weight on round the middle. Libido vanishing fast , which I’m not happy about but I suppose I have no choice in the matter.

I did get achy legs for a couple of weeks but that’s gone now.

Feeling a bit down but not as bad as I was on Prostap. Might have to up the Mirtazapine dose , I’ll see how it goes. I finished all my sessions with my counsellor just before they told me the PCa had returned.

My Consultant said that it’s possible if PSA goes down as low as last time on the Prostap he will consider a holiday from the HT as soon as a year from now. He said maybe a holiday for 2 years. Bit surprised at that but it would be nice if it works out.

He said he will see me in 6 months - I said whoa , that’s too long . I’d be terrified that the Zoladex might stop working and I’d have months of not knowing. So we compromised on 4 months….

Phil

User

Posted 01 Nov 2021 at 15:42

Hi Phil,

Must admit I was really sorry to read about you having to go back on HT. It’s good to hear the Zoladex is working for you, albeit with the awful side effects that go with HT plus the fact that you’ve been there and done it all before!! Good idea to compromise on the 4 months to help psychologically. All the best going forward.

Ange x

User

Posted 24 Feb 2022 at 13:10

So another update: Latest PSA test has shown it has gone up to 1.34 from 1.02 . Hospital don’t seen that worried but I am. Test again in 3 months which will be a nervous time.

I do feel like the Zoladex is hitting the testosterone but I am worried my PCa has become Testosterone independent.

Am I worrying about nothing?

What are my options if the Zoladex isn’t stopping it? Will they try Prostap again or is there no point ?

I want to swear but I won’t 🤷🏼‍♂️

Phil

User

Posted 24 Feb 2022 at 16:00

Hi Phil

I like you have had to go back on Zoladex after recurrence of the cancer. My PSA is now low enough that other treatments are being held back. I have been told that adding Enzalutamide to Zoladex is the likely next step if my PSA starts to rise.

This might be an option for you.

Tom

User

Posted 24 Feb 2022 at 16:10

Hi Tom. Hope that your Zoladex keeps doing the job for a while yet.

I know I shouldn’t but I will look up what side effects the enzalutamide has….

Phil

User

Posted 24 Feb 2022 at 16:23

My husband is in a similar situation G9 with a rising psa so has had enzauldamide added to keep his psa down. He had CT scan and Bone scan which has shown early spread to his shoulder bone but his consultant isn't too worried as the spots are tiny.

He has a PET scan booked to investigate a lung lesion. His consultant believes it is not related to his prostate cancer and probably early signs of lung cancer but time will tell. His words a blessing that his psa was rising as we would have never found the lung issue until it was more advanced. Hoping for radical treatment to fully clear/cure the lung then he can concentrate on battling this b@@tard disease!!

Who knows how long the enzauldamide will work as the HT didn't keep him stable for long but at least there is a whole arsenal of treatment they can still throw his way.

Praying for a break and many normal years ahead of us ;)

Good luck with your journey 🤞

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