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User

Posted 24 May 2021 at 23:33

Hi Jim hope I can help. I’m 4 1/2 months into HT. I asked specifically for Decapeptyl as Prostap is cheap and cheerful. I researched this through others experiences on this forum. Yes they all do the same thing but are different chemicals and I believe the side effects vary. Yep I’m getting hot flushes , mainly first thing on waking and late at night. They aren’t too severe but are a pain. Yes my libido has dropped quite dramatically but I think I was so oversexed to begin with that it’s left me more or less ‘ normal ‘. I’m more concerned with keeping my wife happy than myself in that area tbh. Sadly I seem to have lost the ability to orgasm so it puts me off , but I’m still attracted to and can please my wife. Still using Tadalafil and pump and elections are natural if needed. Night time stirrings are back after a brief break. And yes it will be your strength. I’ve lost a lot of muscle and strength. Mostly in my legs in my case. Belly is more swollen but no actual weight gain. Hope some of this helps you. Sadly I’m on it for life now but pushed enjoyment to the max before starting it so I don’t feel so robbed. Take care

User

Posted 24 May 2021 at 23:54

Thanks Chris for getting back with such a detailed note.

I will investigate Decapeptyl. I previously asked Onco nurse about alternatives due to flushes, and was basically told "they are all the same". 😡

I think I need to get to the gym. Belly and chest getting bigger but no weight gain. Most likely I am losing muscle mass.

I think I'm fighting a losing battle on the libido front. Taking daily tadalafil and using pump but that is not really the issue. Need to waken the libido somehow.

Thanks again,

Jim

User

Posted 25 May 2021 at 01:15

Burghboy, you are not letting your wife down - loss of libido is completely out of your control and there isn't anything you can do to wake it up. Some men are able to engage in sexual activity even with no libido but for most, it is a pointless exercise and can even seem distasteful / gross. I knew when J was going through the motions for my sake and it brought no pleasure to either of us.

Maintaining penile health with use of the pump is a good thing but I think you could cut yourself some slack here.

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

User

Posted 25 May 2021 at 09:06

Originally Posted by: Online Community Member

Hi, I saw surgeon on Thursday, originally I thought I would go for surgery, but after being told the waiting time at the QE bham, would be 10/12 weeks I have decided to opt for hormone and rt, just hope I have made the right decision, the surgeon assures me that both options carry the same amount of drawbacks but both can offer the same success rates, however there are no guarantees when dealing with cancer

I hope it works for you. I think with surgery, there is a greater urine incontinence risk, less so with HT & RT, but it takes a lot longer - in my case about 2 years. Yes, you get the Hot flushes, loss of strength & more.

But I'm coming out of that now, flushes - gone, strength back, Sex is almost back to normal, at 72, that is a bonus!

I'm a year after the end of the HT, & that is how long it took for me to get back to "Normality" - I think. Testosterone is back to normal, I hope that does not upset the PSA test I have this Friday!

Good luck with your course, RT is only over a month, do observe the Diet restrictions to keep the gas down. Holding the pee, was a daily endurance test 😁, but they were great at Addenbrooks in Cambridge. I was just relieved most of this was done & dusted for me, before Covid hit us all.

Edited by member 25 May 2021 at 09:08 | Reason: Not specified

User

Posted 25 May 2021 at 10:50

Thanks Lyn. I know you are right. It's very difficult to accept as you will know from experience with J.

Take care and I hope all is well with you both.

Jim

User

Posted 25 May 2021 at 19:51

I had Zoladex for 3 yrs (with approx 2yrs enzalutimide and abiraterone included) and libido completely disappeared I couldn't actually believe it possible, plenty of hot flushes day/night, weight gain of approx 13kg most seemingly around stomach, lost plenty of strength/stamina/muscle despite trying to keep some exercise going. I seemed to get most of potential side effects. Hot flushes were d/w via acupuncture worked very well. Other things just took time. I finished Zoladex end June 2018, still got some weight to get rid off but other things ok obviously not what they were.So the effects you mention are expected with HT. I obviously only know about the treatment I had.

Peter

User

Posted 25 May 2021 at 20:14

Thanks Peter. I seem to be in the same boat as you.

You have reminded me that some people do well with acupuncture. I need to take that on board. I think a no brainer, no downside. 👍

Cheers, and take care.

Jim

User

Posted 07 Aug 2021 at 17:32

A wee update. Got my second PSA yesterday. 6 months after salvage RT and on HT. <0.1 again.

So all good other than: ED, no labido, loss of muscle strength and stamina, and many hot flushes each. Really struggling with these HT side affects (ED due to all my treatments).

I am on HT for two years. I think I will struggle with another 18 months. I was wondering if there is any updated studies out there relating to HT duration after salvage RT.

As always, thanks for the support on this group.

User

Posted 08 Aug 2021 at 09:19

Stick with it, is all I can say - HT is there, to stop the Cancer returning. It is a year + since I ended my HT, & things are as normal as they can be for a 72 year old - inc ED back to normal, though not much liquid!! The YL is a bit happier now.

User

Posted 08 Aug 2021 at 10:04

I’ve been on HT for 7 months now and sadly for the rest of my life at 54. It is getting me down if I’m honest but essentially QOL still really good. Hardly any side effects other than hot flushes which I can live with. What is really getting me down is that I have good libido and still great erectile function , but orgasm is now very elusive. I’m not selfish at all so am happy to participate in whatever , but it’s really annoying getting so close each time and then it’s gone. My weight is stable , no moobs or tenderness. Leg exercises keeping them strong. It’s hard for everyone but at least you have the option of coming off. I feel like I’m on a final leg as not sure I’d have Chemo or radium etc.

User

Posted 08 Aug 2021 at 10:50

Thanks Bob. How long were you on HT? Good to hear you have got back to some normality. 👍

User

Posted 08 Aug 2021 at 10:56

Chris J. I have followed your story and am really sorry for how this disease has impacted you.

I do have the weight gain, moobs, etc. I need to get more exercise in to help with this.

Jim

Edited by member 08 Aug 2021 at 14:53 | Reason: Missed Chris J's names

User

Posted 18 Nov 2021 at 19:58

Hi all. I am over in Spain for two weeks. Arrived this evening. I have not brought my 5mg daily Tadalafil. Any advice on how to source out here. I am devistated.

Thanks in advance for any help.

Jim

Edited by member 18 Nov 2021 at 19:58 | Reason: Not specified

User

Posted 19 Nov 2021 at 12:40

Panic over. Pharmacist provided over the counter. High cost of course. Good to know for future for anyone.

👍🤗

User

Posted 08 Feb 2022 at 18:12

A wee update and question.

RARLP June 2020. Positive margins and persistent PSA of 0.2. Rising to 0.5 after 3 months. (No lymph node or seminal vesicle involvement.)

HT started Dec 2020. Salvage RT Dec 2020/Jan 2021. PSA < 0.1 since then.

Seeing Onco tomorrow. I have a copy of the report indicating that 18 months of HT is suitable for locally advanced PCa. Will discuss this tomorrow because I would love to get off HT.

Was wondering if anyone has any further updates on optimum HT duration for locally advanced PCa. Or indeed for HT with SRT.

Many thanks,

Jim

User

Posted 13 Feb 2022 at 22:00

Met with Oncologist on Wed.

Had the chat with him about stopping HT after 18 months rather than 24 months.

Many reasons for this but the main one is that my diabetes has got out of control. No changes to my diet or fitness regime. My opinion is this has happened because of a big reduction in muscle mass and a big increase in body fat.

The consultants opinion was with all things considered, and my consistent undetectable PSA, that he support the 18 months HT.

Last jab will be April. Really hoping that I can get my life back to more normality after that. And of course continued undectable PSA

Cheers everyone,

Jim

User

Posted 13 Feb 2022 at 23:17

Good to hear this Jim.

Wishing you all the very best for getting things back to normal after HT and continued undetectable PSA.

My OH has been on HT for 6 months, next one is due next week but he’s not having anymore (after RALP in Dec) we’re now hoping for the same too.

Take care

User

Posted 14 Feb 2022 at 00:21

Thanks Elaine.

Best wishes to you both.

Jim

User

Posted 14 Feb 2022 at 01:33

Great news - sounds like the onco is a good egg.

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

User

Posted 14 Feb 2022 at 10:25

Thanks LynEyre.

👍🙂

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