Stopped HT, erections galore

User

Posted 08 Dec 2019 at 09:25

Hi all,

So I stopped the Bicalutamide/Tamoxifen combo 2 months ago. Fatigue went away fairly quickly and so have the hot flushes and night sweats (thankfully, that was terrible)

sex wise things were still fine until the last 6 months or so when my desire for sex completely disappeared, also awful, especially for my wife.

however, desire has returned with a vengeance, and so have erections, many many of them. I wake in the night with full rock hard ones. I go for a pee and the touching it results in one. I only have to think sexy thoughts and up it goes. Im like a duracell bunny with sex too. Obviously me and the wife pleased at the return of this aspect of out relationship but it’s like when i was 14, entering puberty and had erections all the time. Its a bit embarrassing at times but a problem im happy to be experiencing

I imagine it’s the impact of testosterone having effect again?

i had it checked 2 months ago at the end of HT and it was 14 (on a scale of 10-36) which seemed on the low end to me. I wonder if its increased 2 months on post HT

happy days (for now, who knows whats ahead)

User

Posted 09 Dec 2019 at 18:13

That’s brilliant news Bill, so pleased to hear such good news.

My Prostap should start to wear off on January 10th (31days - I’m counting down like Chris). So looking forward to it.

I’m lucky that I’m still experiencing erections with the help of Ciallis 5mg. But it’s not so spontaneous as before and so I’m hoping that will return eventually.

Been into hospital today to get testosterone blood test added to my next PSA check. Be interesting to see what it is now and also hoping it rises back to normal as yours has obviously done.

Enjoy yourself Bill.

Phil

User

Posted 09 Dec 2019 at 19:46

Thanks for the info Chris.

As I was G9 locally advanced I suppose Bicalutimide wasn’t an option anyway .

As I currently can get erections I am hoping for full recovery in libido and EF.

Also be nice to get my mind back 😳. My wife says I am thinking about 10 things at once and it’s all a bit uncontrollable. Good description I think ....

God only knows what I’ll be like after HT but certainly not the same as when I went in 🙄.

Hope you’re OK Chris ? You have a lot to think about .

Phil

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User

Posted 08 Dec 2019 at 10:51

Ha ha ha - brilliant! It will settle down; as you say, your brain has reverted to the 14 year old state.

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

User

Posted 08 Dec 2019 at 11:05

Bill, that's brilliant news.

Note that bicalutamide doesn't stop testosterone production, it stops your body from using testosterone, so you won't have dropped to castrate levels when on HT (unlike those on LHRH hormone therapies). It might have dropped a bit due to shrinking testicles, but testosterone level is set by a feedback loop between testicles and pituitary gland, not by testicle size, so that might not even affect it.

And by the way, my testosterone test report says normal male level is 6.7 to 25.7 mmol/L, which puts you in the middle.

User

Posted 08 Dec 2019 at 11:16

I stop my HT in 72 days' time (not that I'm counting or anything 😁) so I'll be interested to see if I see similar effects.

Did you stop taking tamoxifen at the same time you stopped the bicalutimide, as a matter of interest?

Cheers,

Chris

User

Posted 08 Dec 2019 at 14:02

Loving it Bill ! There has to be some good news on here now and then. Enjoy it while you can.

User

Posted 08 Dec 2019 at 17:36

Keep it up Bill - Although sounds like you are not having any problems in that dept!!

User

Posted 08 Dec 2019 at 19:55

Originally Posted by: Online Community Member

I stop my HT in 72 days' time (not that I'm counting or anything 😁) so I'll be interested to see if I see similar effects.

Did you stop taking tamoxifen at the same time you stopped the bicalutimide, as a matter of interest?

Cheers,

Chris

hi Chris,

yeah i stopped both at the same time

User

Posted 08 Dec 2019 at 20:43

Thanks, Bill. My oncologist has recommended that I carry on with the tamoxifen for a few weeks after I finish bicalutimide to allow time for the testosterone suppression effect of the bicalutimide to start to wear off.

Cheers,

Chris

User

Posted 08 Dec 2019 at 20:49

Bicalutamide has a half life of up to 10 days, and takes about a month to leave your system, although I don't know how long after the loss of bicalutamide it takes for the testosterone receptors to start working again.

Tamoxifen has a long (and complicated bi-phasic) half-life, but it plus it's active metabolite (n-desmethyltamoxifen) have a half life of around 3 weeks, and take over 3 months to leave your system.

So if you stop them both together, the tamoxifen protection will outlast the bicalutamide in your system anyway.

Edited by member 08 Dec 2019 at 20:50 | Reason: Not specified

User

Posted 08 Dec 2019 at 20:55

Thanks, Andy. That's very helpful to know.

Cheers,

Chris

User

Posted 08 Dec 2019 at 21:01

I’m jealous - I had non nerve sparing - but pleased for you. I’ve asked for an implant.

ulsterman

User

Posted 08 Dec 2019 at 21:35

Making up for lost time - lucky you!

Barry

User

Posted 09 Dec 2019 at 12:06

Lucky you. Enjoy your new adolescence!

Ido4

User

Posted 09 Dec 2019 at 15:32

I was diagnosed in August 2017 with a psa of 99.6. Completed all the chemo, radiotherapy and hdr brachytherapy by April 2017. I finish 🙏 my sixth 6-monthly injections in March 2020 - am on Triptorelin - anyone heard of this drug.? My psa is now 0.7. Looking forward to the same experiences on completion of my hormone treatment!

User

Posted 09 Dec 2019 at 18:13

That’s brilliant news Bill, so pleased to hear such good news.

My Prostap should start to wear off on January 10th (31days - I’m counting down like Chris). So looking forward to it.

I’m lucky that I’m still experiencing erections with the help of Ciallis 5mg. But it’s not so spontaneous as before and so I’m hoping that will return eventually.

Been into hospital today to get testosterone blood test added to my next PSA check. Be interesting to see what it is now and also hoping it rises back to normal as yours has obviously done.

Enjoy yourself Bill.

Phil

User

Posted 09 Dec 2019 at 18:21

Bill was on bicalutimide, Phil. That doesn't stop the production of testosterone, unlike the injected hormone you're on. The way that bicalutimide works is to block testosterone reception. So your testosterone levels remain normal, but your body stops using it.

Cheers,

Chris

User

Posted 09 Dec 2019 at 18:31

Hi Chris , yep get that. My testosterone will take longer to get back to normal as my body was stopped from making it. Fingers crossed it’s not too long 😆😆.

I have wondered why some of us are put on Bicalutimide and some on the Prostap and similar. I’m sure there’s an answer coming soon 😊

Just so good to hear someone coming out the other side . Good luck to Bill - make the most of it .....

Phil

Edited by member 09 Dec 2019 at 19:08 | Reason: Not specified

User

Posted 09 Dec 2019 at 19:21

Bicalutamide has far far less side effects than injectable HT. It’s also far more friendly when it comes to libido and EF. I took it for 11 months and lost no libido at all. My EF hadn’t returned post surgery so I can’t comment on that. Bicalutamide is often used for the six months prior to RT. It can cause fatigue , weight gain , moobs, etc but not on the scale of injectable HT. With high grade cancer it often only works for a year , but can be added later to other HT with combined effectiveness. It’s far easier to recover function coming off Bicalutamide than it is coming off injectable , because in reality you never really lose much T production

User

Posted 09 Dec 2019 at 19:46

Thanks for the info Chris.

As I was G9 locally advanced I suppose Bicalutimide wasn’t an option anyway .

As I currently can get erections I am hoping for full recovery in libido and EF.

Also be nice to get my mind back 😳. My wife says I am thinking about 10 things at once and it’s all a bit uncontrollable. Good description I think ....

God only knows what I’ll be like after HT but certainly not the same as when I went in 🙄.

Hope you’re OK Chris ? You have a lot to think about .

Phil

User

Posted 09 Dec 2019 at 21:21

Side effects do vary from person to person. Chris didn’t lose his libido on bicalutimide, but mine’s completely disappeared. The mechanical function is still there, but the desire has utterly gone. On the other hand I haven’t had hot flushes, which many men do get. It’s pot luck which side effects you get or avoid. Overall, though, I’ve found my 16 months on bicalutimide to be entirely manageable, although I am looking forward to coming off it in February.

Cheers,

Chris

User

Posted 10 Dec 2019 at 11:04

Hot flushes were the worst symptom, that sudden, uncontrollable feeing of overheating - urgh

and the night sweats? It added greatly to the fatigue as I was waking up at least 10-15 times per night needing to throw the duvet off, I’m so glad they have stopped.

re: libido

although i could still get erections on HT, I wasn't interested. That was actually worse than post-op where I couldn't get erections but wanted to have sex

i have small man boobs, need to lose a stone and see how my body looks before visiting GP for a referral for breast reduction surgery

my body went very hairless during H/T, slowly seeing chest / leg hair beginning to sprout. H/T is an awful, awful thing to go through

User

Posted 10 Dec 2019 at 12:05

As I said, Bill, personally I haven't found it awful at all. I'm delighted to hear that you're recovering normal "function" so rapidly.

Please let us know how you get on with a referral for breast reduction. I asked my oncologist about it and he said that in his experience it's very rarely approved on the NHS.

Cheers,

Chris

User

Posted 10 Dec 2019 at 13:34

Bill, Chris,

Never got the Boobs, the fatigue or weight gain. Had a bit of the sweats but nothing I couldn’t handle. If anything my libido went up ( pardon the pun ) after I started Prostap HT. I had Brachytherapy and RT pretty soon after. EF suffered a little but Ciallis has helped with that.

I did a Tough Mudder in May this year , a year and a bit into HT and was ok during training.

My biggest issue by far for me has been mental. I can’t go into detail but it’s been very hard dealing with childhood stuff I buried long long ago.

I am so glad to be coming off the HT now and don’t know how I’d cope with having to go back on again should the worst happen...I might even say no.

Let’s hope the research leads to something better than the HT, either by earlier diagnosis or treatment method.

Keep us posted on your progress.

Phil

User

Posted 17 Dec 2019 at 16:41

Things still going well, libido through the roof (I think my wife is getting irritated at me for always wanting sex) I get that thing i used to get pre-op - when you wake during the night needing a pee - but with a full erection

good to see the body hair sprouting and overall I feel much more like my old self - well, teenage self too 😂

during HT, although i was tired a lot I remained physically active at the gym and cycling so weight was under control, could lose 6-12 pounds though. I also took strong calcium supplements to offset bone density problems

User

Posted 17 Dec 2019 at 17:01

So pleased all seems to be going so well for you Bill.

Hoping I have as much luck when my HT runs out .......

Phil

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