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When to stop this Chemical Castration?

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User
Posted 14 Mar 2022 at 08:41

Hi,

Yes. The big question.

I've been on CC for seven months now and still have these mental meltdowns.

In fact far more over the last month (during my 20 sessions of radiotherapy) than all of last year.

Some of them have been suicidal and even with the milder ones, i simply can not continue life like this.

My onco agrees and has encouraged me to continue through RT but has left the end date up to me.

I've had 2 months of Degarelix, two weeks of bicalutamide and now Prostap. Next one due beginning of May.

I'm asking for other guys opinions and experiences plus any hard statistical data on cancer reoccurrence and longevity.

Please have a look at my blog before giving any armchair medical advice.

Gracias 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 14 Mar 2022 at 21:04
My path and prognosis are different to yours as I’m no longer on a curative path , but if you read my profile you’ll see I’ve always put QOL at the forefront and declined quite a few treatments based on this ! Sadly I’m on HT forever now but I get your vibe and yes we all react differently. I hate it too and would rather not be on it but I have no choice. Go with both your gut and Onco advice. They never criticised me for putting my foot down and doing my own thing , and because of that life is still not so bad.
User
Posted 14 Mar 2022 at 10:52

Hi,

From your blog I can see you would be as capable as me on searching the internet for statistical evidence of HT effectiveness, and if you have found none I suspect I won't. I was on HT (CC if you prefer) for two years I did not have much problem.

As you know from my other posts I rate quality of life fairly high. So as your oncologist agrees you can choose the end date then that is what you should do. In your position I would not have the May injection. The RT kills the cancer over the lifetime of the cells which is about 18 months, it would be nice if the HT helped over that same time period. As it will take about 6 months to a year to recover from HT it will probably still be effective until the end of the year, and the most important time period was the few months before and after RT. 

So stop as soon as possible and then keep posting on here to let us know how things are going. You are going to be the clinical trial for stopping HT early.

Dave

User
Posted 14 Mar 2022 at 13:23

Cancer cells can take up to 18 months to die after being zapped by RT, which is why 18 months to 2 years is the recommended length of treatment. I carried on for the recommended 18 months, and didn't personally find HT too bad at all. Only you can decide what's right for you.

Cheers,

Chris

Edited by member 14 Mar 2022 at 13:27  | Reason: Not specified

User
Posted 29 Mar 2022 at 12:35

Hope I’m getting the terminology right. I’m new to this game and it’s all a fast learning experience, made a bit more difficult by having at the same time become Type 2 diabetic and self injecting with insulin. 
My PSA last September was 500 and I was suffering terrible pains and headaches. I was diagnosed with Stage 4 PC and offered chemo or HT. I was steered in the direction of the latter and have been on Zoladex and Enza ever since. They’ve saved my life at least for the moment. PSA now 0.1. Side effects not too bad. Hot flushes etc but also the young “chaps” have shrivelled to almost nothing. 
I’ve suggested to the lady captain of my golf club that I should be admitted to the ladies section or at least be allowed to play from the ladies tees. Still awaiting a response! 

on the lemons point if life gives you lemons bugger the lemonade. Much better used in a stiff g & t, with ice slimline tonic of course and followed by plenty of red wine. 

Onwards and sideways. If this had all happened 20 years ago I’d have been a goner by now. Most of us probably would. 

 

User
Posted 14 Mar 2022 at 20:35
I was on Zoladex for 3 years, had many of the side effects physical and mental when I would just start crying over nothing - I might have been having a shower, on bike, rowing machine, walking along road, driving along etc etc. I had a couple of these 'bouts' and was prescribed anti depressants for 6 months on first occasion and twelve for the other and I do think they really helped. I was sort of expecting to suffer this, though I'm not prone to depression, as it's a known issue, potentially.

I will say though that I did not have suicidal thoughts, which must obviously be a lot worse, GP help?

Peter

User
Posted 14 Mar 2022 at 21:57

Thanks.

Our quote is...if we didn't have bad luck we'd have no luck at all!

There's a mother of a PCa sufferer on my blog comments....her son is in his 40's

Such a shame....all i can do is raise awareness....the blog has done that. My dear brother has put it on the Millwall supporters site and the Met retirees....let's hope some of them take notice!

It is truly wretched but it needn't be. My neighbour got tested and I thought was following me...... MRI, TRUS biopsy, 24 cores then nothing....no cancer at all...

So hope. Get tested young(er) man!

 

 

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 14 Mar 2022 at 22:46
"There's a mother of a PCa sufferer on my blog comments....her son is in his 40's"

We have a friend whose grandson died of PCa at age 27 in 2021 and have had members on here diagnosed with advanced PCa in their 30s and 40s.

I don't think there is any madness in stopping the HT right now. You gave it a go, it will have helped during the RT and some men don't have HT at all with curative RT. My husband stopped after 6 months instead of doing the full 18 months although his was salvage RT so a little different. QoL is everything

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

User
Posted 29 Mar 2022 at 18:10
Enjoy the g&t and keep doing well.

As regards the 20 yrs. I've been here circa 18 yrs (RT HT Zoladex). At your staging some may have done well  but in those times wouldnt have been much in the medicine chest once HT ceased to work effectively.

Ray

User
Posted 30 Mar 2022 at 04:20
I had 8 months of Zoladex which covered the two months or so period of high dose RT back in 2008. The thing that affected me most with HT was premature fatigue, weight gain and loss of libido. I have never had HT since the RT. However, a new tumour subsequently formed in my Prostate and this was treated with HIFU in 2015 and at that point I was offered HT but declined. Apart from a small drop shortly after the HIFU, my PSA increased very slowly and it was agreed after a bit of pushing by me that the HIFU would be repeated which was done in December 2021. I hope this has eradicated or knocked back the tumour and I have a few years before having to consider whether to have HT, as they won't subject my Prostate to a fourth major treatment.

In retrospect, might my cancer treatment have been more effective if I had continued with HT after the RT or after the HIFU - really don't know, although experience of Oncologists seems to suggest subsequent HT does generally give better results? So it comes down to individual choice as nobody is forced to have follow up RT.

Barry
User
Posted 24 Apr 2022 at 15:17

Well I view the benefits of HT as like an exponential decay curve (I know you are a scientist, so you will know what this is). Basically the first bit is very beneficial, each subsequent bit is less beneficial than the previous one, but it will always be beneficial till the end of time (well that is probably not true, five years more likely), but the added benefit becomes so small compared to the cost that it becomes appropriate to stop.

I think only you can make the decision when to stop. Onco can give his opinion and guidance, but you are the one who is having to live with this not the onco. 

Dave

User
Posted 25 Apr 2022 at 00:12

There are other curves to consider though. Counteracting the possible extensions of life you get from HT, there's measurable stuff like bone density loss, plus potential cardiac problems and circulatory system changes, pulmonary disease [etc]  plus the most obvious change which is loss of fitness, gain of weight and something that feels like you're physically [and maybe mentally] 10 years older.

In terms of lifespan it's a question of balancing up the PCa virtues of the curve for HT against the other nasties which might be harder to quantify medically but are undeniably playing a part in shortening lifespan.

 

Jules

User
Posted 25 Apr 2022 at 09:04

Thanks. Yes, I'm now getting more into the longer term side effects...weight gain, waist size up, body hair changes, muscle loss....26% increase in getting dementia ...sorry where was I?

I had little to no sleep last night owing to this mirtazapine! Weird stuff.

Decision time soon.

Quite a few papers on increased depression and dementia

https://www.renalandurologynews.com/home/news/urology/prostate-cancer/prostate-cancer-androgen-deprivation-therapy-adt-dementia-depression/

And here's another article...I've read this many times before...I really don't think I should be on ADT any more, it really is killing me ..

https://www.pcf.org/c/adt-what-you-really-need-to-know/

 

Edited by member 25 Apr 2022 at 09:47  | Reason: Update

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 25 Apr 2022 at 12:29

Hi Esteban I do agree hormone therapy is not ideal first six months was tolerable last few months really difficult fatigue bone ache hot sweats just to name a few mentioned in it at last appointment they said it's a personal choice but be aware off a risk off reccuring PC if I did decide to come by off it told them I would carry on only 3more hopefully to go but like you say it's not great but they emphasized the choice is yours alone 👍

User
Posted 25 Apr 2022 at 13:14
Esteban, given that you're having such major problems with ADT, have you considered requesting that you're transferred to an non-ADT form of HT such as bicalutimide?

Best wishes,

Chris

User
Posted 25 Apr 2022 at 21:06
Ok sorry if I spoke out of turn truly. You’ll know by my bio that I’m QOL first also. I guess I’ve just been luckier than you re side-effects. Good luck with those sessions. In my opinion they are better than you think and can be powerful in that you just get stuff off your chest. Quite often the talk turns well away from cancer and into anything that you want to chat about. Talk is good therapy.

I wish you the very best

User
Posted 25 Apr 2022 at 22:29
Esteban, I did the MacMillan counselling sessions when I was first diagnosed with cancer (I was diagnosed with both prostate cancer and kidney cancer, which was discovered by my prostate MRI scans) and found them extremely helpful. Do give them a go at least!

Best wishes,

Chris

User
Posted 26 Apr 2022 at 09:47

Yes, I've had two already....striving to get me into positive places rather than "sitting on the sofa" mode and spiralling down.

Recommended.

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 26 Apr 2022 at 09:56
You've completed your RT haven't you, Esteban? That should mean that your cancer is sorted out. There's every reason to be optimistic about the future. You've done all the hard stuff already!

Very best wishes,

Chris

User
Posted 27 Apr 2022 at 11:01

Ha, going to be an interesting chat with your onco but given what you've been through there's good reason for your decision. I'm supposed to stay on Zoladex for 3 years but there's no way I'm going to conform. Clearly ADT can "hold" the progress of cancer, either before or after treatment but in some cases this will be putting off the inevitable, while in others it will be a waste of time and QOL if RT was successful and the patient is and remains free of cancer.

Jules

Edited by member 27 Apr 2022 at 11:02  | Reason: Not specified

User
Posted 29 Apr 2022 at 13:38
Glad you've made the decision that's right for you!

Best wishes,

Chris

User
Posted 19 Sep 2022 at 09:42

Hi guys,

Just thought I ought to return here for an update. I have to say looking back on this forum ....I've found some comments helpful but also it has the potential for being unhelpful and sometimes distressing. So much so I left, vowing not to return.

But I owe it to fellow sufferers to update.

I'm now 5 months post HT or CC as I call it. I was on the panel to review (and get paid) for PCR UK webinars recently - very good series, esp the last three, including end of life.

My blog, see profile, is up to date, my hormones are just beginning to return. The sexual side of things is improving..yes what those cheery medics call the "new normal", which translates as it's sh*** but not as shitty as it was!

Erections now possible but the Happy endings still difficult and very low scoring, lol.

The mental state is still very fragile - meltdowns and tears, yes but less frequent and intense.

Blood tests now being done every 3-4 months....PSA last 2 times was exactly 0.4. Testosterone was 0.8 and then 1.8, so away to go.

 

On the plus side I'm now a radio presenter on Mind Station - a show dedicated to mental health issues... positive music!

I'm also involved in setting up a local men's shed in Haverfordwest.....us blokes really do need more support!

Cheers and thanks

 

Steve

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 20 Sep 2022 at 17:54

Good to here from you Steve. My testosterone stayed low for about six months but then suddenly jumped up. I now feel pretty much back to normal.

Dave

User
Posted 21 Sep 2022 at 01:02
Good that you have become involved with additional things. This will not only help others but will be good interest and therapy for you.
Barry
Show Most Thanked Posts
User
Posted 14 Mar 2022 at 10:52

Hi,

From your blog I can see you would be as capable as me on searching the internet for statistical evidence of HT effectiveness, and if you have found none I suspect I won't. I was on HT (CC if you prefer) for two years I did not have much problem.

As you know from my other posts I rate quality of life fairly high. So as your oncologist agrees you can choose the end date then that is what you should do. In your position I would not have the May injection. The RT kills the cancer over the lifetime of the cells which is about 18 months, it would be nice if the HT helped over that same time period. As it will take about 6 months to a year to recover from HT it will probably still be effective until the end of the year, and the most important time period was the few months before and after RT. 

So stop as soon as possible and then keep posting on here to let us know how things are going. You are going to be the clinical trial for stopping HT early.

Dave

User
Posted 14 Mar 2022 at 11:48

Hi,

And a big thanks for not leaping in with opinions! I left this site once before because of those people!

So, guinea pig eh?

 

I'll keep you posted

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 14 Mar 2022 at 13:23

Cancer cells can take up to 18 months to die after being zapped by RT, which is why 18 months to 2 years is the recommended length of treatment. I carried on for the recommended 18 months, and didn't personally find HT too bad at all. Only you can decide what's right for you.

Cheers,

Chris

Edited by member 14 Mar 2022 at 13:27  | Reason: Not specified

User
Posted 14 Mar 2022 at 13:36

Hi,

Yes I'm aware of that. But if I stop now, I'll have had 8 months it'll take up to a year for the boys to start making testosterone....so that's 14 months post RT...

As you say QoL is important. For me it hasn't been a breeze...breaking into tears, complete crushing physically and emotionally has been awful....

In fact the several suicidal episodes should be a guide for me...i know .all blokes are different...

 

I'll keep you posted

 

 

Edited by member 14 Mar 2022 at 14:47  | Reason: Update

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 14 Mar 2022 at 20:35
I was on Zoladex for 3 years, had many of the side effects physical and mental when I would just start crying over nothing - I might have been having a shower, on bike, rowing machine, walking along road, driving along etc etc. I had a couple of these 'bouts' and was prescribed anti depressants for 6 months on first occasion and twelve for the other and I do think they really helped. I was sort of expecting to suffer this, though I'm not prone to depression, as it's a known issue, potentially.

I will say though that I did not have suicidal thoughts, which must obviously be a lot worse, GP help?

Peter

User
Posted 14 Mar 2022 at 21:04
My path and prognosis are different to yours as I’m no longer on a curative path , but if you read my profile you’ll see I’ve always put QOL at the forefront and declined quite a few treatments based on this ! Sadly I’m on HT forever now but I get your vibe and yes we all react differently. I hate it too and would rather not be on it but I have no choice. Go with both your gut and Onco advice. They never criticised me for putting my foot down and doing my own thing , and because of that life is still not so bad.
User
Posted 14 Mar 2022 at 21:28

Thank you but if someone quotes that lemons quote one more time.....!

 

Lmfao

 

 

 

 

Edited by moderator 14 Mar 2022 at 22:55  | Reason: Edited by moderator to remove expletive

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 14 Mar 2022 at 21:28

GP prescribed diazepam which I take sparingly

 

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 14 Mar 2022 at 21:40

Yes, I've read your bio...what a journey.

And what do I have to complain about?

We do all have judgements to make...and I agree QoL is probably tops

When we young, we were immortal...not so now and there's choices...not just for us but for those around us too..

Thanks

Edited by member 14 Mar 2022 at 21:41  | Reason: Update

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 14 Mar 2022 at 21:51
Yes Esteban we all make our own journeys and decisions. Sorry about the quote but it’s just been there for nearly 7 years. Diazepam is great but I don’t rely on it. I rely more on red wine 🍷 😆

And you have plenty to complain about. It’s a wretched curse and we all make do as best we can. I’m not even 55 yet :-(

User
Posted 14 Mar 2022 at 21:57

Thanks.

Our quote is...if we didn't have bad luck we'd have no luck at all!

There's a mother of a PCa sufferer on my blog comments....her son is in his 40's

Such a shame....all i can do is raise awareness....the blog has done that. My dear brother has put it on the Millwall supporters site and the Met retirees....let's hope some of them take notice!

It is truly wretched but it needn't be. My neighbour got tested and I thought was following me...... MRI, TRUS biopsy, 24 cores then nothing....no cancer at all...

So hope. Get tested young(er) man!

 

 

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 14 Mar 2022 at 22:46
"There's a mother of a PCa sufferer on my blog comments....her son is in his 40's"

We have a friend whose grandson died of PCa at age 27 in 2021 and have had members on here diagnosed with advanced PCa in their 30s and 40s.

I don't think there is any madness in stopping the HT right now. You gave it a go, it will have helped during the RT and some men don't have HT at all with curative RT. My husband stopped after 6 months instead of doing the full 18 months although his was salvage RT so a little different. QoL is everything

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

User
Posted 29 Mar 2022 at 12:35

Hope I’m getting the terminology right. I’m new to this game and it’s all a fast learning experience, made a bit more difficult by having at the same time become Type 2 diabetic and self injecting with insulin. 
My PSA last September was 500 and I was suffering terrible pains and headaches. I was diagnosed with Stage 4 PC and offered chemo or HT. I was steered in the direction of the latter and have been on Zoladex and Enza ever since. They’ve saved my life at least for the moment. PSA now 0.1. Side effects not too bad. Hot flushes etc but also the young “chaps” have shrivelled to almost nothing. 
I’ve suggested to the lady captain of my golf club that I should be admitted to the ladies section or at least be allowed to play from the ladies tees. Still awaiting a response! 

on the lemons point if life gives you lemons bugger the lemonade. Much better used in a stiff g & t, with ice slimline tonic of course and followed by plenty of red wine. 

Onwards and sideways. If this had all happened 20 years ago I’d have been a goner by now. Most of us probably would. 

 

User
Posted 29 Mar 2022 at 14:01

Thanks

I agree on the G&T!

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 29 Mar 2022 at 18:10
Enjoy the g&t and keep doing well.

As regards the 20 yrs. I've been here circa 18 yrs (RT HT Zoladex). At your staging some may have done well  but in those times wouldnt have been much in the medicine chest once HT ceased to work effectively.

Ray

User
Posted 30 Mar 2022 at 04:20
I had 8 months of Zoladex which covered the two months or so period of high dose RT back in 2008. The thing that affected me most with HT was premature fatigue, weight gain and loss of libido. I have never had HT since the RT. However, a new tumour subsequently formed in my Prostate and this was treated with HIFU in 2015 and at that point I was offered HT but declined. Apart from a small drop shortly after the HIFU, my PSA increased very slowly and it was agreed after a bit of pushing by me that the HIFU would be repeated which was done in December 2021. I hope this has eradicated or knocked back the tumour and I have a few years before having to consider whether to have HT, as they won't subject my Prostate to a fourth major treatment.

In retrospect, might my cancer treatment have been more effective if I had continued with HT after the RT or after the HIFU - really don't know, although experience of Oncologists seems to suggest subsequent HT does generally give better results? So it comes down to individual choice as nobody is forced to have follow up RT.

Barry
User
Posted 24 Apr 2022 at 10:08

Hi, time for an update. I have been scouring the interweb for info.

Not really a lot on the reasons why HT, sorry CC is given such a lengthy timespan.

I've added references on my blog, towards the end, citing the reasons why 18 months gives almost the same life outcomes as 3 years 

There's also a paper on comparing 6 months to 18. Over the next 10 years, about 9% of men died from PCa whereas around 13% died who were on the shorter dose.  The difference was actually 3.6%!

I'm now on mirtazapine (3rd week) and seem to get little benefit, just more side effects! I guess it needs a few weeks to kick in.  I'm also getting those six free counseling sessions via Macmillan.

But I'm still getting horrible suicidal meltdowns....they're lasting longer. Plus after 8 months on CC I'm getting more longer term "blessings"... increased weight, waist increased, fatigue, brain fog and lethargy, hair loss ....and after RT (2 months on) erections nope, sexual function nope.

Since I was started on degarelix, ie castration in 3 days, i really have had the full 8 months....next jab in 2 weeks time. My wife is keen that i stop too. She's fed up of having to hide the knives..no, I'm not kidding!

My onco is going to phone my on Friday...this will be my final review post RT, I hope we can chat about CC too.

Esteban

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 24 Apr 2022 at 15:17

Well I view the benefits of HT as like an exponential decay curve (I know you are a scientist, so you will know what this is). Basically the first bit is very beneficial, each subsequent bit is less beneficial than the previous one, but it will always be beneficial till the end of time (well that is probably not true, five years more likely), but the added benefit becomes so small compared to the cost that it becomes appropriate to stop.

I think only you can make the decision when to stop. Onco can give his opinion and guidance, but you are the one who is having to live with this not the onco. 

Dave

User
Posted 25 Apr 2022 at 00:12

There are other curves to consider though. Counteracting the possible extensions of life you get from HT, there's measurable stuff like bone density loss, plus potential cardiac problems and circulatory system changes, pulmonary disease [etc]  plus the most obvious change which is loss of fitness, gain of weight and something that feels like you're physically [and maybe mentally] 10 years older.

In terms of lifespan it's a question of balancing up the PCa virtues of the curve for HT against the other nasties which might be harder to quantify medically but are undeniably playing a part in shortening lifespan.

 

Jules

 
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