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 07 Mar 2024 at 12:44

Originally Posted by: Online Community Member

Really sorry to read that Derek, that is quite severe. Are you sure it’s down to Zoladex ? Could it be something else underlying ?

Hi Goose,

I’m not sure about anything now Goose😟, all I can say is this started about 9 months into HT. I know there can be a tendency to blame everything on these drugs(I’m on Prostap) but the Anxiety, Brain Fog, Loss of libido, Hot flushes, Insomnia, ED and weight gain ALL started at various points after being on this drug, so is the joint pain just coincidence? Before then I was very active, able to walk long distances, cycle(ebike), go to the gym. Now I’m struggling to walk. I am at our place in Fuerteventura ATM. Last night I walked(hobbled) into Corralejo to have a few drinks at a bar my friend works in. It’s a 30 minute walk which I took slowly(normally I route march it😊). By the time I got there I was exhausted and my legs were painful, I sat down on a bar stool and had a drink. When I tried to get up after ONE drink, I had to hang onto the bar and was in agony. They managed to get a taxi to take me home which I fell into and could hardly get out, the driver must have thought I was p****d(more likely p****d off). This morning I have been down(in the car) to get a walking stick, that’s what it has come to. It’s not as bad but I’m taking it VERY easy. Anything weight bearing is causing me real problems….I can get on my ebike and cycle fine but walking is really difficult.

I am due to fly home on the 29th and Ive managed to get an appointment with my GP on 1st April(it’s no fool!).
I’ve already had blood tests and all was ok, and polymyalgia Rheumatica has been ruled out. However if this gets any worse I will need to return home early as there is definitely something severely amiss. I’m also going to phone my CNS next week.

Sorry about the moan but it’s really getting to me now😟

Good luck with your RT…that was really a breeze for me!

Derek

User

Posted 19 Mar 2024 at 08:44

The research data says that 18 months of HT is just as effective as 24 or 36 months but, with a shorter time for side effects, 18 months is better for quality of life. There won't be any research about the difference between 16 months and 18 months but since so many men now have RT without HT at all or just for 6 months, it seems reasonable to conclude that stopping 2 months early is not going to undo all the good work of the RT. Your PSA is low and stable, all the indicators are good, so it might be time for quality of life considerations to come back to the fore.

Re recovery of testosterone - it does take some men a while for T to recover, particularly older men whose T would naturally be dropping anyway. But the reason that it is essential that HT is given every month / 28 days / 3 months / 84 days is because it is possible for the T to kick back in very, very quickly. You won't know which group you are in until you stop HT.

Reducing side effects - they say that it takes as long for the side effects to go as it took for them to show ... so if your side effects appeared very early in the treatment programme, they are likely to disappear just as quickly and if it took a long time for them to develop, it may take a long time for them to abate. For example, some men have problems with breathlessness almost immediately when they start HT and find that their breathing improves soon after they stop.

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

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 👍

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 10 Mar 2024 at 08:24

Have now checked and a month after I'd started HT PSA was down from 40 to 19. I didn't have another PSA till a month after RT ( sept 22). when it was down to 0.05.

User

Posted 11 Mar 2024 at 22:01

Hi Bean121,

I am so sorry to hear this and I feel for you. You are the same age as me and I really do worry about what this ADT is doing to my body and what the long term effects will be on my QOL. I am going to question the need for 3 years of ADT but first I need to convince myself (and I suppose my Onco) what will give me the best chance of not having to endure this treatment for the rest of my life should I stop treatment too early.

I really hope you manage to regain some of your ‘mojo’ through time.

All the best,

Derek

User

Posted 13 Mar 2024 at 18:57

Derek yes as I said I did have muscle/joint pain but nothing like as bad as yourself, things like having to 'roll over' to get off the floor hanging onto chair or something and sometimes struggling a bit getting out of chair but obv all manageable, thankfully. The worst pain I had was put down to the prednisolone (steroid I had to counteract effects of abiraterone/enzalutimide)which tightened my achilles tendons, effectively shortening them, which was very painful with a burning sensation, very difficult to walk for a time and I 'got scared' when anything looked like going anywhere near achilles'. It did eventually clear after stretching exercises advised via physio, it lasted maybe 3 weeks but felt like 3 years so those really struggling with pain I feel for them.

Peter

User

Posted 26 Oct 2023 at 19:01

Thanks

Les

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 ‘ long term toxicity ‘ with the Radiotherapy treatment, but the trial clearly seems to be looking at the ADT effects only.

Chris

User

Posted 07 Mar 2024 at 09:29

My Onco said he preferred PSA to be <1 before starting RT. I ended up on HT for 9 months before RT started for various reasons, some being down to NHS poor communication between different Trusts. My PSA was down to 0.9 at start of RT and now almost a year later is down to 0.1 and still coming down…next test 4th April.
I would do ANYTHING for my Onco to give me the go ahead to stop HT as the side effects for me have been quite debilitating, the worst by far being joint pain - I am now really struggling with walking and I’ve got another year of this to go😩 if it gets any worse I will be in a wheelchair!

I am going to have a serious conversation with my CNS about this…my GP didn’t even know that joint pain was a side effect of this drug🤷🏼‍♂️

User

Posted 07 Mar 2024 at 15:35

Hi Decho

I'll double check my records to make sure, I'm away from home at the moment. I got my diagnosis on 1 February 2021 & went on HT end of march/early April. My RT started second week in July. As I say I'll double check records. But I don't recall any discussion on PSA having to be at a certain level before RT.

Les

Edited by member 10 Mar 2024 at 08:19 | Reason: Not specified

User

Posted 11 Mar 2024 at 20:52

I commenced 36 months Zoladex in Jan 2020. Had 20 days EBRT summer of 2020 finishing August that year. Had my last Zoladex Jan 2023 which "ran out" April 2023. Had my first, and only post ADT blood test, November 2023. PSA >0.1 (the lowest my Trust records), testosterone "undetectable". Not due another blood test until May but there's been no physical signs of testosterone return since November - let's face it if you know you know. Like most I suppose I just went along with the regime the oncologist prescribed. I am of course grateful for the positive impact the ADT had on my cancer but with hindsight, and knowing what I know now, I would have questioned the need for 36 months. I've now been without testosterone for nearly four and a half years and have suffered the physical and mental consequences. I'd give anything to have it back. I'm 68 and dealing not only with the inevitable effects of old age but also with those effects plus no testosterone. Tired, no stamina, losing muscle and bone strength, and incapable of losing body fat. I really worry about my heart health especially.

User

Posted 12 Mar 2024 at 12:23

Just over 3 months.

User

Posted 12 Mar 2024 at 18:48

I'm currently 67, had 3 years Zoladex that ended summer 2018 (also had 2 yrs on trial with abiraterone, enzalutimide) with 32 sessions of RT to prostate & pelvis. PSA before RT was undetectable, initial PSA 21, after 12 months on ADT (delay due to TURP&wedding, all with onco's approval& obv treatment working).

I suffered all the side effects expected and accepted them by simply assuming they'd go away in time. They obv stopped me doing as much as I'd like but tried to carry on exercising. Admittedly I'm sure my joint/muscle pains werent as bad as others.

I have to say the effects did essentially all disappear and testesterone did return fully but it did take longer than I expected.

Knowing what I know now I'd do same again, just shows how we look at things differently, maybe considering I'm generally back to normal helps!

Peter

User

Posted 12 Mar 2024 at 19:52

That’s good to hear Peter,I’m pleased you have recovered.

I’ve never stopped exercising although now that has been curtailed as I cant walk very far without a stick. Out on my ebike for a short cycle this afternoon and all was ok,going to try a longer ride next couple of days. What I can’t understand is the variance with the joint issues. A few weeks ago I couldn’t get up from a chair without major effort, my knees felt so weak. now no problem I can get up no hands, But any weight bearing exercise causes me discomfort and pain in my hips…it’s really weird. Climbing stairs has to be done leading with my good leg, which is now starting to feel overworked.

Ive tried to stay positive throughout this journey and generally have dealt with, or lived with, the many side effects but the joint pain really causes me concern. I REALLY need to find out WHY my legs are like this so that I can rule out the HT as the cause.

Im also really keen to try and find out WHY some men seem to get off with few side effects and yet others suffer badly, and am considering compiling a questionnaire to see if there is a link.

Derek

User

Posted 18 Mar 2024 at 23:42

I had Gleason 9 locally contained (as far as a PSMA can tell) after a failed HIFU for Gleason 7. I started bicalutimide and then zoladex and has RT in November/December 2022. My PSA was around 0.5 when starting RT then 3 months post RT was 0.01 and apart from a different lab blip has stayed there since. I never got a base testosterone but it has been around 0.5-0.8 since I started zoladex in October 2022.

I had polio so can’t exercise and already have low muscle and also use a BiPap ventilator for sleep to breath. So my oncologist was nervous of me having more than 6 months ADT.

I however have tried to make 18 months since start of RT (the Canadian study suggests this is reasonable). I am struggling as I have two months to go and think why am I so fixated on the 18 months ! But I did have Gleason 9 despite the good RT and HT PSA nadir.

The side effects such as hot flushes and hair loss and fatigue I can pit up with but the joint pain is a little worse now and I’m biphosphonates as I have mild osteoporosis as I started HT.

I am more concerned that I have become anaemic dropping my from 14 to 11.8 the last few months and there no iron deficiency- seems some men get this with hormone therapy. Has anyone else ? What if anything was done ?

the return of testosterone seems the real issue - HOW LONG also seems variable as does how much is recovered.
I think it’s like a tanker … stop the zoladex and it can take a lot no time to get the T back as effects run on !

As I said I’m struggling mentally with stopping and worrying about the ongoing effects - of course doesn’t help that oncologist says standard of care is 24 months but maybe I should stop much earlier. I’m lucky as my GP checks regularly hence they flagging up my anaemia and low RBC.

my weight is very little different but I’m only 54 kilos and I’m 73 now - seems it’s hard as we are all different and the use and length of ADT and it’s long term risks seems different between oncologist and centres.

Apologies for the ramble and maybe revealing a bit of brain fog and anxiety woven in there, so few disabled people to compare with anywhere so often feel alone and winging it - also only just managed to get back into the forum after a while !

Show Most Thanked Posts

User

Posted 26 Oct 2023 at 22:46

Hi Les,

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

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 👍

User

Posted 27 Oct 2023 at 04:30

Dave

User

Posted 27 Oct 2023 at 14:33

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 ‘ your PSA was stable ‘ ( > 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,

Chris

User

Posted 07 Mar 2024 at 06:32

Hi Dave, sorry for not replying sooner. My first PSA at the time I first went to see my GP was 39 (this had risen to 40 by the time of hospital appointment about a month). I was put on Hormone tablets then injection even before I'd decided what treatment I should go for, much to my surprise, no one said but I suspect they thought it may had speed not only due to PSA but I'd lost almost 3 stone in a short time (without trying) I also had a PET scan later on..

At the time of my Radiotherapy my PSA had come down to 19. After RT it dropped to 0.05 where it had stayed ever since.

I had/still have most of the HT side effects. The worst for me have been not flushes, which have been really bad particularly at night I can count on one had the good night sleeps I've had one the past 2 years. This has also not helped with mood and brain fog.

I've just had my first PSA since shopping HT. PDA still 0.05 also had, for the first time, my testosterone level checked. This was 0.07, non existent. GO had asked that testosterone be checked every 2 months.

Hot flushes generally the same. Mood and brain fog, a bit better, at least My wife thinks so. Every thing else the same.

Good luck with your treatment.

Les

User

Posted 07 Mar 2024 at 07:05

Originally Posted by: Online Community Member

At the time of my Radiotherapy my PSA had come down to 19. After RT it dropped to 0.05 where it had stayed ever since.

Hi Les

Apologies for veering off topic, but I'm curious about the timeframe between your last PSA reading of 19 and commencing RT. Mine is currently hovering around 8.5, and I'm scheduled to start RT in six weeks. Just trying to get some perspective.

Thanks in advance

User

Posted 07 Mar 2024 at 09:29

I am going to have a serious conversation with my CNS about this…my GP didn’t even know that joint pain was a side effect of this drug🤷🏼‍♂️

User

Posted 07 Mar 2024 at 09:44

Really sorry to read that Derek, that is quite severe. Are you sure it’s down to Zoladex ? Could it be something else underlying ?

User

Posted 07 Mar 2024 at 12:44

Originally Posted by: Online Community Member

Really sorry to read that Derek, that is quite severe. Are you sure it’s down to Zoladex ? Could it be something else underlying ?

Hi Goose,

Sorry about the moan but it’s really getting to me now😟

Good luck with your RT…that was really a breeze for me!

Derek

User

Posted 07 Mar 2024 at 15:35

Hi Decho

Les

Edited by member 10 Mar 2024 at 08:19 | Reason: Not specified

User

Posted 10 Mar 2024 at 08:24

Have now checked and a month after I'd started HT PSA was down from 40 to 19. I didn't have another PSA till a month after RT ( sept 22). when it was down to 0.05.

User

Posted 10 Mar 2024 at 09:25

Thanks, That’s really good results Les, well done!👏👏👏

I have my next PSA test and another dose of Prostap😩 on 4th April. Hoping my PSA is stable at 0.1 or even lower…and praying for the words….’you don’t need any more HT!’🙏

Derek

User

Posted 11 Mar 2024 at 07:14

Thanks Les.

But how long was it from your PSA test (reading 19) until your 1st RT session.

Many thanks.

User

Posted 11 Mar 2024 at 20:52

User

Posted 11 Mar 2024 at 22:01

Hi Bean121,

I really hope you manage to regain some of your ‘mojo’ through time.

All the best,

Derek

User

Posted 12 Mar 2024 at 12:23

Just over 3 months.

User

Posted 12 Mar 2024 at 18:48

I have to say the effects did essentially all disappear and testesterone did return fully but it did take longer than I expected.

Knowing what I know now I'd do same again, just shows how we look at things differently, maybe considering I'm generally back to normal helps!

Peter

User

Posted 12 Mar 2024 at 19:52

That’s good to hear Peter,I’m pleased you have recovered.

Im also really keen to try and find out WHY some men seem to get off with few side effects and yet others suffer badly, and am considering compiling a questionnaire to see if there is a link.

Derek

User

Posted 13 Mar 2024 at 18:57

Peter

User

Posted 18 Mar 2024 at 23:42

I had polio so can’t exercise and already have low muscle and also use a BiPap ventilator for sleep to breath. So my oncologist was nervous of me having more than 6 months ADT.

The side effects such as hot flushes and hair loss and fatigue I can pit up with but the joint pain is a little worse now and I’m biphosphonates as I have mild osteoporosis as I started HT.

User

Posted 19 Mar 2024 at 08:44

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

User

Posted 08 Apr 2024 at 15:22

Has anyone got a link to the actual trial that indicated 36 months gives little advantage over 18 months HT, please?

User

Posted 08 Apr 2024 at 15:39

paper 2018 (Canada)

https://pubmed.ncbi.nlm.nih.gov/29980331/

Research conclusion :

in localized HRPC results support that 36 mo is not superior to 18 mo of ADT. ADT combined with RT can potentially be reduced to 18 mo in selected men without compromising survival or QoL. Thus, 18 mo of ADT appears to represent a valid option in HRPC.

…….

tjere are a few others but the problem with the trial was that so many men dropped out in the 36 month arm that that biases the result toward 18 months being equivalent - doesn’t mean it wrong just not ideal to be sure.

i have decided to stop now having done 17 months since starting my RT given also my other issues of polio muscle loss - and as my response has been good - 3 month post RT PSA 0.01 and remains there and my testosterone has been consistently below 0.07 and last one undetectable or <0.5 - which seems by sole research to also be an indicator in high risk of better long term outcome. (Link available)

User

Posted 06 May 2024 at 19:31

@Decho I'm with you, I really would like to stop the Prostap 3 ASAP and realistically I guess that is 18 months. I don't see the point in prolonging the side effects for little or no benefit. Although as you and others have said, I want to do everything I can to stop the cancer coming back......

I haven't had the follow up call to my RT yet (was supposed to be Thursday at 16:00 but of course they called after 17:00 when I was on a flight to Amsterdam and couldn't take a personal call.

User

Posted 07 May 2024 at 07:59

Hi pdj,

I have now had my last Prostap injection(hopefully forever🤞) on April 4th. After my legs gave way on holiday I had a conversation with my CNS, and she then contacted my Onco who was happy for me to stop. So, that’s 2 years I will have been on this stuff(I call it poison but it DOES seem to have done its job so I should be grateful🤷🏼‍♂️). this current jab runs out on? 4th July….Independence Day🤣🤣🤣 and I’m counting down the days. I know things are not going to change quickly but hopefully I will see a gradual improvement. As my testosterone comes back I can only pray that my PSA will stay within nadir boundaries (+2 for me as I am now undetectable), as the thought of being on this for life fills me with dread 😩

From what I’ve learned from the experts on this forum, being on HT for a while after finishing RT helps mop up any micro mets which maybe weren’t visible on scans. How long that period is I don’t know but I will have been on it 15 months after RT finished.

I have VERY strong feelings about this and wouldn’t wish anyone to go against advice but I really feel that nobody should be on this drug longer than necessary.

Good luck,

Derek

User

Posted 07 Oct 2024 at 19:50

Hi Decho,

Hope you are keeping well and life is much better without the HT.

I'm having my sixth Prostap 3 injection on Friday and would then like to talk to my doctor, oncologist or urologist about stopping the treatment. My PSA levels have been undetectable since my RT back in March and obviously I will continue the blood tests after this (hopefully final) HT injection.

My question is whom should I speak to if I want to stop after the sixth injection? (which would be 18 months).

All the best!

Peter

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