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User
Posted 08 Aug 2021 at 09:50

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


J

User
Posted 08 Aug 2021 at 09:56

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 13:53  | Reason: Missed Chris J's names

User
Posted 18 Nov 2021 at 18:58

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 18:58  | Reason: Not specified

User
Posted 19 Nov 2021 at 11:40

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


👍🤗

User
Posted 08 Feb 2022 at 17:12

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 21:00
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 22:17

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 13 Feb 2022 at 23:21

Thanks Elaine.


Best wishes to you both.


Jim

User
Posted 14 Feb 2022 at 00:33
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 09:25

Thanks LynEyre.


👍🙂

User
Posted 09 Apr 2022 at 19:20
Quick update. I had my last planned hormone injection on Thursday April 7th. Hopefully this is the beginning of the end for my treatment. Looking forward to getting back to more normal over the next several months.

Fingers crossed going forward. 🤞

All the best to everyone in this community. 🤗
User
Posted 27 Aug 2022 at 18:15

A wee update. Had my last Prostap3 injection in April.


First blood test post HT in early Aug. Testosterone still through the floor. PSA <0.1. So that's good.


Next chat with Consultant in Feb. However, I pushing for another PSA test and testosterone in 3 months.


Interestingly I am still getting loads of hot flushes?


Cheers,


Jim

User
Posted 27 Aug 2022 at 19:02

Good news Jim.


Robs flushes still continued while his testosterone was low, they said to him it would take 6-9months for the HT to leave his system from when the last injection came to an end (so Nov 2021 injection came to an end feb 2022….so 6-9 months from then….if that makes sense) His testosterone 6 months on has risen from <0.04 to 7.3 and he doesn’t get flushes anymore. 


Best of luck going forward 

User
Posted 27 Aug 2022 at 20:46

It took 9 months before my Testosterone budged from almost zero, after the last injection ran out (i.e. from when I would have had the next injection, if I hadn't stopped). When it did move, it recovered very quickly, not gradually.

User
Posted 28 Aug 2022 at 00:52

It's a couple of years back now, my last HT injection was April. By early September nothing had improved. On Christmas day about 8 months after last injection. I had my first spontaneous erection in years. Quite a nice present.

Dave

User
Posted 09 Feb 2023 at 20:57
Hi all. Apologies for my lack of input recently. An update because I know some people follow my journey.

My history. 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 and RT (20 sessions) started Dec 2020. HT last injection April 2022.

Most recent blood test Jan 30th 2023. PSA < 0.1. Testosterone measurable for the first time since HT stopped at 1.2nmol/l. Very low but heading in the right direction.

All in all a very happy bunny. 👍

Jim
User
Posted 09 Feb 2023 at 22:41
Great result Jim. How did you find coming off the Prostrap 3s, i notice you were still getting hot flushes in august 22 though that was only a few weeks after your last injection had done its 3 months. Anything else of note? I'm due my last one in October hopefully... Hoping some of the aches and pains might subside, though they have been a bit more spaced out over the last few months, and probably down to age rather than the HT! 😀

Cheers,
Nick
User
Posted 10 Feb 2023 at 10:56

Thanks Nick.


Yes still getting the flushes. Much diminished in frequency but still strong. Libido still very low as well.


Energy has still been low but definitely improved recently and in coincidence with the small increase in testosterone.


Otherwise good. 🙂


Cheers,


Jim

User
Posted 10 Feb 2023 at 17:24
It sounds like your well on the road to recovery - it can be a long job though.
Good luck.
User
Posted 16 Aug 2023 at 09:56
Another 6 months passes. PSA < 0.1. Absolutely delighted.

Testosterone still very low after more than year coming off HT. It is coming back slowly and have more energy than I have had for more than 3 years.

I'm still on 5mg daily Tadalafil with not much impact. Any advice on moving to event dose instead?

Best wishes to all on this page. 🤗
User
Posted 29 Jan 2024 at 11:06
Another 6 month and another PSA test.

Still less 0.1. So well chuffed. Testosterone 6.3. A rise from around 5 last time. Increasing very slowing. 19 months since my last hormone injection.

Best wishes to all on this site. 🤗👍
User
Posted 29 Jan 2024 at 11:26

Originally Posted by: Online Community Member

Still less 0.1. So well chuffed.


Brilliant result Jim. Thanks for the update. Good news always cheers me up.


Adrian

Edited by member 29 Jan 2024 at 12:16  | Reason: Typo

 
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