Stopping HT injections

User

Posted 11 Mar 2024 at 21:52

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 11 Mar 2024 at 23:01

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 12 Mar 2024 at 13:23

Just over 3 months.

User

Posted 12 Mar 2024 at 19:48

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 20:52

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 13 Mar 2024 at 19:57

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 19 Mar 2024 at 00:42

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 !

User

Posted 19 Mar 2024 at 09:44

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 08 Apr 2024 at 16:22

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 16:39

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 20:31

@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 08:59

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 20:50

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

User

Posted 29 Mar 2025 at 10:01

Diagnosed in early November - I started Prostap - tablets for a month then one injection on 11th November 2024 - a specialist (who I trust) said I should instead have had a prostatectomy. I stopped the Prostap (next injection was due 11th February) I had a prostatectomy on 23rd January 2025. My questions are these - given I only had the one injection - how long now before the side effects of the Prostap - night sweats, zero libido etc. wear off and my testosterone levels increase? Also would taking some form of testosterone injection/tablets/cream help - or is that a crazy idea?

Paul1599

User

Posted 29 Mar 2025 at 15:01

It can vary so much between different people that there is no reliable answer. I was on Zoladex for 2 years and it took just under a year to recover. Anecdotally people say the less time you were on it the quicker the recovery, people suggest the amount of time you were on it is roughly how long it will take to recover, so in your case three months.

Oncologists don't like letting people who have had prostate cancer, and been successfully treated have testosterone replacement, in my opinion that is stupid as particularly in your case, you have no prostate.

If I were you I would just wait it out, hopefully by June you will be feeling OK. Do let us know how things go. Consider yourself a guinea pig whose experience will at least inform future people in your situation.

Dave

User

Posted 29 Mar 2025 at 20:38

Not much data on recovery after just one HT shot. If I was to guess, I suspect your Testosterone might reappear around 3 months after the injection ran out. Ask for Testosterone test to be added to your PSA tests - given you did do HT, no one can make any sense of your PSA tests now without knowing your Testosterone level.

By the way, there have been trials on taking HT with prostatectomy, and it does reduce the recurrence rate, but I doubt a single injection would have much effect on that.

User

Posted 29 Mar 2025 at 20:45

Thank you.

I had a PSA and testosterone test result on the 14th March and both were near zero but, as you pointed out, my specialist said it meant little until my testosterone levels pick up. Hence why I wondered about trying to 'kick start' them. But I guess I should be a patient patient. Thanks again. Paul

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