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Life after decapeptyl

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User
Posted 31 Mar 2023 at 07:54

Hi folks hope you're well and staying strong,  just a quick question,  after I finish my hormone injections which willbe at the end of the year , will the anxiety and depression,  late night toilet runs , aches and pains etc all go away and if so how long will it take ..thanks for reading 

User
Posted 12 Apr 2023 at 12:59

I did almost 2 years on Zoladex.

Around 9-10 months after the last injection wore off (i.e. from the point where I would have had the next injection had I not stopped), Testosterone returned, and when it did, it did so quite quickly. Some things then happen quite quickly like body hair regrowing, having to remember to shave and trim beard more often, but others take longer - libido possibly another 6 months, or as I said to my oncologist, it might just be that I'd forgotten what it was. So it didn't take me 2 years to get back to normal, but perhaps 15-18 months.

User
Posted 09 Feb 2024 at 19:43

Sorry to hear you’re still suffering Lifestooshort, the thought that at the end of this it will take THREE YEARS for my side effects to diminish fills me with dread😟

Derek

Edited by member 09 Feb 2024 at 19:44  | Reason: Not specified

User
Posted 31 Mar 2023 at 09:48
The rule of thumb is that things return to normal in the same time as you were on the drug. Some aspects may improve more quickly than others. Good luck
User
Posted 09 Feb 2024 at 16:18

It's now 12 months since I came off Decapeptyl, so here's a summary of how things have transpired meantime.

Some side effects, such as hot flushes and their accompanying arm pain, fatigue and debilitation, gradually eased for a while, but now they appear to be returning with a vengeance. The big difference being that, whilst on HT, bouts lasted around 5-15 minutes and were roughly every hour, they are now less frequent but longer lasting.

Meanwhile neither bladder incontinence, which effectively doubled with the onset of HT, nor night trips to the loo, which increased from an average of two trips per night to four or five at the start of HT, have improved in the slightest since.

As for libido, so far there has been a slight return , but really nothing much.  

Edited by member 14 Feb 2024 at 11:36  | Reason: Correction.

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User
Posted 31 Mar 2023 at 09:48
The rule of thumb is that things return to normal in the same time as you were on the drug. Some aspects may improve more quickly than others. Good luck
User
Posted 31 Mar 2023 at 19:25
I was 3 yrs on Zoladex (with RT & nearly 2 yrs via trial with abiraterone&enzalutimide), yes things improved greatly although it did take a long time for me but I was expecting it to. I seem to have developed mild anaemia during treatment which remains but of no concern, currently waiting medication to d/w low Zinc levels which seems to have occured during treatment. However, seeing as its over 7 yrs when first diagnosed may not be able to blame PCa for everything, aging does happen. I've no complaints over treatment and given the choice would do same, knowing what I know now. Although HT/RT was the only option given to me at the time.

Peter

User
Posted 12 Apr 2023 at 10:20

Originally Posted by: Online Community Member
The rule of thumb is that things return to normal in the same time as you were on the drug. Some aspects may improve more quickly than others. Good luck

Thanks, that's helpful. Unfortunately I'm continuing to suffer extreme side effects, so would I be right in assuming this means the cancer will also continue to be being held at bay?

Knowing this would make the pesky effects that much more bearable!

User
Posted 12 Apr 2023 at 12:27
Bobby1962, I got dreadful anxiety when I started on Prostap but a mild dose of sertraline transformed how I’m feeling. I took the attitude that if I’m going to be on this for 3 years I want some quality of life. I find that daily exercise helps with the aches and pains but you are probably already doing this. As soon as I stop doing them, or if I overdo them they come back.

That’s on top of loss of libido, hot flushes and other nasties that come with this ‘treatment’😟

So, it might be 3 years before I get my QOL back after HT stops, that’s 6 years in total? I just hope that I don’t get recurrence during that time requiring me to go back on HT!

User
Posted 12 Apr 2023 at 12:59

I did almost 2 years on Zoladex.

Around 9-10 months after the last injection wore off (i.e. from the point where I would have had the next injection had I not stopped), Testosterone returned, and when it did, it did so quite quickly. Some things then happen quite quickly like body hair regrowing, having to remember to shave and trim beard more often, but others take longer - libido possibly another 6 months, or as I said to my oncologist, it might just be that I'd forgotten what it was. So it didn't take me 2 years to get back to normal, but perhaps 15-18 months.

User
Posted 09 Feb 2024 at 16:18

It's now 12 months since I came off Decapeptyl, so here's a summary of how things have transpired meantime.

Some side effects, such as hot flushes and their accompanying arm pain, fatigue and debilitation, gradually eased for a while, but now they appear to be returning with a vengeance. The big difference being that, whilst on HT, bouts lasted around 5-15 minutes and were roughly every hour, they are now less frequent but longer lasting.

Meanwhile neither bladder incontinence, which effectively doubled with the onset of HT, nor night trips to the loo, which increased from an average of two trips per night to four or five at the start of HT, have improved in the slightest since.

As for libido, so far there has been a slight return , but really nothing much.  

Edited by member 14 Feb 2024 at 11:36  | Reason: Correction.

User
Posted 09 Feb 2024 at 19:43

Sorry to hear you’re still suffering Lifestooshort, the thought that at the end of this it will take THREE YEARS for my side effects to diminish fills me with dread😟

Derek

Edited by member 09 Feb 2024 at 19:44  | Reason: Not specified

 
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