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Stopping HT injections

User
Posted 26 Oct 2023 at 19:01

Hi, after 18 months my consultant has agreed I don't have to have any more HT injections 😎 my last injection is just over 12 weeks ago. I know we are all different and it can take years (If at all) to get your testosterone back. My question is how do you know when it's starting to return, do the hot flushes normally stop first or do you get your libido back first? I've never had my testosterone levels checked should I have and should I have them checked next time I have my PSA test done?

Thanks

Les

 

 

 

User
Posted 26 Oct 2023 at 19:01

Hi, after 18 months my consultant has agreed I don't have to have any more HT injections 😎 my last injection is just over 12 weeks ago. I know we are all different and it can take years (If at all) to get your testosterone back. My question is how do you know when it's starting to return, do the hot flushes normally stop first or do you get your libido back first? I've never had my testosterone levels checked should I have and should I have them checked next time I have my PSA test done?

Thanks

Les

 

 

 

User
Posted 26 Oct 2023 at 22:46

Hi Les, 

Glad you’re able to come off the HT now.

When my husband was first diagnosed he was put on Prostap as they thought it had spread. He only had it for 6 months. I asked if we should check his testosterone beforehand but I was told no need….I really wish we had though. Anyway I did get it tested after his RP every 3 months along with PSA….the highest it ever got to was 10 (he was 74 at the time). The figures may differ slightly but I believe normal testosterone levels should be somewhere between 7 and 27….being on the lower end of that as you get older.

He didn’t get too many side effects so hopefully someone else will come on to advise when their flushes stopped and libido returned etc.

Best of luck πŸ‘

 

User
Posted 27 Oct 2023 at 04:30

It took just under a year from my last injection to waking up in the morning with a hard on. I didn't get many hot flushes on HT so that wasn't a great indicator for me. So I would say libido is the first indicator. I was beginning to get worried after about 6 months and asked them to add testosterone to PSA tests. First one came back at 1.0 after six month, but it was about 17 after a year. So yes I would get your testosterone checked, just so you know what is going on.

Dave

User
Posted 27 Oct 2023 at 14:33

Agreed- definitely get some sight of your testosterone numbers. My recovery sequence has been:  return of body hair after about 9 months; then libido, then a reduction ( but not yet a cessation) of hot flushes. Still struggling to get my running speed back ( and it wasn't great to start with!).

User
Posted 15 Jan 2024 at 17:28
Hi Rory,

Whilst I don’t know for certain, I can only imagine it does. Usually I would associate the phrase β€˜ long term toxicity β€˜ with the Radiotherapy treatment, but the trial clearly seems to be looking at the ADT effects only.

Chris

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User
Posted 26 Oct 2023 at 22:46

Hi Les, 

Glad you’re able to come off the HT now.

When my husband was first diagnosed he was put on Prostap as they thought it had spread. He only had it for 6 months. I asked if we should check his testosterone beforehand but I was told no need….I really wish we had though. Anyway I did get it tested after his RP every 3 months along with PSA….the highest it ever got to was 10 (he was 74 at the time). The figures may differ slightly but I believe normal testosterone levels should be somewhere between 7 and 27….being on the lower end of that as you get older.

He didn’t get too many side effects so hopefully someone else will come on to advise when their flushes stopped and libido returned etc.

Best of luck πŸ‘

 

User
Posted 27 Oct 2023 at 04:30

It took just under a year from my last injection to waking up in the morning with a hard on. I didn't get many hot flushes on HT so that wasn't a great indicator for me. So I would say libido is the first indicator. I was beginning to get worried after about 6 months and asked them to add testosterone to PSA tests. First one came back at 1.0 after six month, but it was about 17 after a year. So yes I would get your testosterone checked, just so you know what is going on.

Dave

User
Posted 27 Oct 2023 at 14:33

Agreed- definitely get some sight of your testosterone numbers. My recovery sequence has been:  return of body hair after about 9 months; then libido, then a reduction ( but not yet a cessation) of hot flushes. Still struggling to get my running speed back ( and it wasn't great to start with!).

User
Posted 10 Jan 2024 at 10:31

Hopefully you will quickly find that feeling of desire again Quick Draw

 

Edited by member 15 Feb 2024 at 07:54  | Reason: Not specified

User
Posted 10 Jan 2024 at 10:55

About 12 months for me at 76. I've just had some test results that rate my testosterone as normal at 18 whatsy units. Hair regrowth still only partial. Libido good but I feel sort of out of touch with the sensation. No hot flushes. Physical strength and speed still down but whereas before exercise didn't seem to do anything, now the gains are sticking [I hope]. I guess the sequence might vary for different people. Somebody here said that the first thing they noticed was the return of their body smell.

Jules

User
Posted 10 Jan 2024 at 20:26

Hi Les,

You seem to be on a similar path to me. My PSA was 36 but staging was T3b and Gleason 4+3, so I wasn’t offered surgery. I was just wondering what made your consultant decide that you were able to come off HT. Was it a consistently low PSA? I’m wondering what your PSA levels were before and after RT? Was it 18 months after RT finished or 18 months since start of HT. Ive been on HT for 18 months with another 18 to go and it’s a constant battle against side effects, especially joint pain, and I’m quite concerned about my mobility if I’m on this for another 18 months. My current PSA is 0.1,  NOT <0.1. I know I could just stop them myself but I want to give myself the best chance and would rather not go against my Oncos advice unless the difference it would make to my chances was small.

I’d be interested to hear your take on this.

Thanks,

Derek

User
Posted 11 Jan 2024 at 16:23

Decho , my scores are very similar to yours , I think you posted to me , cheers 

I too would be very interested to know what logic determines when HT can stop after RT 

The thought of any extended HT (ie: more than 12 months ) is very intimidating and demoralising , can't even bear to imagine 36 months 

Does anyone know what determines timeline , appreciate it can differ greatly , but what is HT time after RT based on 

 

Thanks

 

 

 

User
Posted 12 Jan 2024 at 17:19
Hi Jim,

The link below, and the original Canadian trial it mentions, has been quoted a number of times on the site in relation to reducing ADT from 36 to 18 months.

My Oncology department allowed me to reduce from the initial 36 months ( about 18 months ago ). The nurse acknowledged the trial and it’s results, although also did mention during the conversation that β€˜ your PSA was stable β€˜ ( > 0.1 )

If you Google about the trial I think you’ll find various references to it.

https://www.oncnursingnews.com/view/patients-with-prostate-cancer-report-better-quality-of-life-with-18-months-of-adt-vs-36-months#

Cheers,

Chris

User
Posted 14 Jan 2024 at 08:47

Chris thanks for posting, what did that article mean by " long term toxicity?" Did it mean the symptoms such as flushes pain etc?

Rory

User
Posted 15 Jan 2024 at 17:28
Hi Rory,

Whilst I don’t know for certain, I can only imagine it does. Usually I would associate the phrase β€˜ long term toxicity β€˜ with the Radiotherapy treatment, but the trial clearly seems to be looking at the ADT effects only.

Chris

 
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