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Tiredness and lack of sleep

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User
Posted 01 Jan 2023 at 14:22

Hi I was diagnosed 12 months ago with PC been on HT ever since had brachytherapy back in June followed by RT for 4 and a half weeks. 

I’ve always exercised gym bike running etc. but not I get really tired and fatigued quickly and easily. This then impacts my hot sweats and sleep. 

Help I’m struggling any help or advice please 

 

Clive

Edited by member 04 Jan 2023 at 14:47  | Reason: Not specified

User
Posted 02 Jan 2023 at 09:44

I had two years of HT. I didn't suffer too badly, but we are all different. I hope others will soon post with practical advice.

HT is most useful pre RT and for many months after that. We have had a few members stop HT earlier than initially recommended as the side effects were intolerable. For how long are you expected to be on RT?

Dave

User
Posted 02 Jan 2023 at 10:52
My only practical suggestion would be to switch to gentler forms of exercise. Fatigue is an extremely common side-effect of HT. In my case the result was that I've never slept better in my life - I'd go out like a light when my head hit the pillow. Sorry to hear that it's leaving you tired and unable to sleep - that's an awful combination.

Best wishes,

Chris

User
Posted 02 Jan 2023 at 11:43
We used to have a member here (called Old Al although he was only in his 50s) who was in a wheelchair due to mets and extreme fatigue. He took up swimming and eventually regained his mobility. PCUK then funded some research on HT-induced fatigue so it might be worth you giving the PCUK nurses a call?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jan 2023 at 13:37

Hi Dave two years but I have my second review next Friday. On my last review my oncology consultant said there could be a chance I come off HT as my PSA was now 0.09 from 10 pre-op. Not holding my breath. 
interesting to see what he says and what PSA is now. I’ll only go with their advice and recommendations.

Clive 

User
Posted 02 Jan 2023 at 14:47

Hi Clive

I started on zoladex Jan 22 followed by RT in May (60 gy 20 fractions ) to treat T3b n0m0 g9 tumor. At first post RT review meeting in Sept psa down to 0.08 and the oncologist stopped the zolly which surprised me but I was not sorry. As I am 79 perhaps he weighed up quality of remaining life against chances of remission! I shall have to wait and see.

Peternigel

User
Posted 03 Jan 2023 at 19:41
I had HT 3yrs Zoladex (including couple yrs abiraterone, enzalutimide, prednisolone on trial) &RT, treatment finished summer 2018.

I was at least averagely fit, enjoyed exercise and all that, continued working mostly tho office job but think I sort of didn't work whilst having RT (only because work quite relaxed with me).

At times there was nothing I could do to avoid the fatigue, I'd often just fall asleep whilst reading and I mean properly asleep. It wasn't all the time and maybe it was worse last part of RT. When I could I always tried to exercise, gym, bike, windsurf, paddleboard, but obviously to a far lesser extent than I'd like whilst being fully aware that it was treatment having this effect and things will improve - and they did.

Peter

User
Posted 03 Jan 2023 at 20:22

Clive, as someone who also runs and rides I've had much the same experience as you. I've just ended 2 years of Zoladex post RT and at this stage the tiredness and loss of strength is diminishing even before the return of testosterone [if I'm lucky, at the age of 75].

What I found was that there was a definite initial drop in both strength and endurance. I use a Garmin recorder on my bike and the drop was a measurable 20% for power. Endurance was less measurable but mental effects mixed in with the pharmacological effects so it was hard to separate the two.

It is both hard and frustrating attempting to keep exercise going with HT. I dropped my cycling at about a year in just because it was going nowhere though I kept plodding along with the running.

I guess the "good" news is that side effects to plateau, you sort of get used to them and when you finish your HT you will probably be on the up physically and mentally.

Jules

User
Posted 03 Jan 2023 at 21:23
For a good news story, look up member Irun (or google him - Kevin Webber) who continued running ultramarathons despite extensive mets, while having chemo and HT. He has raised hundreds of thousands of £££ for PCUK, written a book about powering through an incurable cancer diagnosis and was awarded the BEM. He is exceptional but it shows that sometimes, a man is able to overcome the fatigue.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 02 Jan 2023 at 09:44

I had two years of HT. I didn't suffer too badly, but we are all different. I hope others will soon post with practical advice.

HT is most useful pre RT and for many months after that. We have had a few members stop HT earlier than initially recommended as the side effects were intolerable. For how long are you expected to be on RT?

Dave

User
Posted 02 Jan 2023 at 10:52
My only practical suggestion would be to switch to gentler forms of exercise. Fatigue is an extremely common side-effect of HT. In my case the result was that I've never slept better in my life - I'd go out like a light when my head hit the pillow. Sorry to hear that it's leaving you tired and unable to sleep - that's an awful combination.

Best wishes,

Chris

User
Posted 02 Jan 2023 at 11:43
We used to have a member here (called Old Al although he was only in his 50s) who was in a wheelchair due to mets and extreme fatigue. He took up swimming and eventually regained his mobility. PCUK then funded some research on HT-induced fatigue so it might be worth you giving the PCUK nurses a call?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jan 2023 at 13:37

Hi Dave two years but I have my second review next Friday. On my last review my oncology consultant said there could be a chance I come off HT as my PSA was now 0.09 from 10 pre-op. Not holding my breath. 
interesting to see what he says and what PSA is now. I’ll only go with their advice and recommendations.

Clive 

User
Posted 02 Jan 2023 at 14:47

Hi Clive

I started on zoladex Jan 22 followed by RT in May (60 gy 20 fractions ) to treat T3b n0m0 g9 tumor. At first post RT review meeting in Sept psa down to 0.08 and the oncologist stopped the zolly which surprised me but I was not sorry. As I am 79 perhaps he weighed up quality of remaining life against chances of remission! I shall have to wait and see.

Peternigel

User
Posted 03 Jan 2023 at 11:14

Thanks Peter

Good luck and all the best for a long happy life 💯😎

User
Posted 03 Jan 2023 at 19:41
I had HT 3yrs Zoladex (including couple yrs abiraterone, enzalutimide, prednisolone on trial) &RT, treatment finished summer 2018.

I was at least averagely fit, enjoyed exercise and all that, continued working mostly tho office job but think I sort of didn't work whilst having RT (only because work quite relaxed with me).

At times there was nothing I could do to avoid the fatigue, I'd often just fall asleep whilst reading and I mean properly asleep. It wasn't all the time and maybe it was worse last part of RT. When I could I always tried to exercise, gym, bike, windsurf, paddleboard, but obviously to a far lesser extent than I'd like whilst being fully aware that it was treatment having this effect and things will improve - and they did.

Peter

User
Posted 03 Jan 2023 at 20:22

Clive, as someone who also runs and rides I've had much the same experience as you. I've just ended 2 years of Zoladex post RT and at this stage the tiredness and loss of strength is diminishing even before the return of testosterone [if I'm lucky, at the age of 75].

What I found was that there was a definite initial drop in both strength and endurance. I use a Garmin recorder on my bike and the drop was a measurable 20% for power. Endurance was less measurable but mental effects mixed in with the pharmacological effects so it was hard to separate the two.

It is both hard and frustrating attempting to keep exercise going with HT. I dropped my cycling at about a year in just because it was going nowhere though I kept plodding along with the running.

I guess the "good" news is that side effects to plateau, you sort of get used to them and when you finish your HT you will probably be on the up physically and mentally.

Jules

User
Posted 03 Jan 2023 at 21:23
For a good news story, look up member Irun (or google him - Kevin Webber) who continued running ultramarathons despite extensive mets, while having chemo and HT. He has raised hundreds of thousands of £££ for PCUK, written a book about powering through an incurable cancer diagnosis and was awarded the BEM. He is exceptional but it shows that sometimes, a man is able to overcome the fatigue.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Jan 2023 at 14:44

Thanks Peter much appreciate thanks 😎

User
Posted 04 Jan 2023 at 14:46

Thanks Jules much appreciated just knowing there is small light coming perhaps and hopefully does help 😎

Regards Clive

 
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