Hi all
Been on HT for few months, and enzalutamide just over couple weeks.
Usual side effect of HT, but since starting the enzalutamide, few extra side effects, aiches n Paine's, dry skin, bit more emotional lowering at times.
But the main one which effects all others the disrupted sleep....
Had few nights of disturbed fidgety sleep, Had 1 night of no sleep got night of bit sleep, then night of no sleep watching sun come up again....
Messed me up and effected all those possitive things I can do.
Really couldn't function...
Spoke with chemist oncologist and taken me of for few weeks.
Restless legs(which is like small muscle spasms that can be legs arms etc)
The normal sad and sometimes despairing emotional side, went lower to despairing/suicidal
Without sleeping felt like dead person pretending to be alive???
Anyway, had few extra hours sleep and feeling bit more positive,
but I'm now wondering if it was enzalutamide or just the additional decrease in testororine.
I been walking, active, eating fairly well(can always do better) socialising positive but realistic.
Couple weeks time chemist has said about aplutamide which also throws up other side effects.
Wonder if best just having shorter life on just HT???
All thoughts are appreciated
Hi Troxly
I have been offered the Enzalutamide and also am reading about the side effects. I haven't heard anything positive about taking this treatment so for the time being have suggested we hold back on this path.
I have though been on monthly injections ( presently being given every 3 months) as I was at the start of my treatment 4 years ago. This has reduced my PSA again and I am feeling quite good. My decision has been to hold off on the Enzalutamide in favour of quality of life. I am 74 now so who knows how much time I have left and prefer to make the most of my current health. Family are off my hands with Grand children I am financially sound and my wife is supportive. All things I have considered.
Incidentally my continuous and frequent sweats are being kept in check with a drug called Medroxyprogesterone acetate
Best of luck with your choices
Teapot
Hi teapot.
I'm 49.
Been told enzalutamide take 2 weeks come out system, feeling bit better now, sleep still bad but getting some more, but feel bit more like a human 'being'.
ALSO THIS IS JUST MY OWN PERSON EXPERIENCE AND EVERYONE RESPONDS DIFFRENT. ANY BODY READING THIS SHOULDNT LET IT PUT ANYONE OF TRYING IT,
IT MAYBE THE RIGHT THING FOR YOU AND GIVE YOU GREAT QUALITY WITH LITTLE SIDE EFFECTS.
Felt like signing death warrant coming of the Enzalutamide....
But am feeling better, the injections hopefully keeping me ok at mo.
Got 15 year old twins,
3 decent years probs be great, boys be 18 and will feel bit more like I've done my guiding role....they young men able grow trendy beards n silly hair cuts.
I try live in this day only, and just for this day(today) life is good
loss of sleep and extreme lows at times stop me being able to see this, or do the things that help get me out of these.
It's nice to be open and honest...we can all say words and pretend, for me reality can be great tool as well as denial.
Hi Troxly
I have been on HT & Enzalutamide for 20 months now, like you had a little issue with hot flushes, restless legs, dried skin & sleeping properly as well as heart palpitations, within 3- 4 weeks most these settled down. Still have the dry skin but nothing that aveeno can't sort out. Flushes are few & far between now & living a fully active normal life.
Wish you well on your journey
Hi I have been on Enzalutimide for 27 months now along with a three monthly hormone injection .I had salvage RT after failed prostectomy in 2020 and my psa fell from 28 where it rose to after the prostectomy to undetectable four weeks later and there it has remained ever since .I have hot flushes ,difficulty sleeping and restless legs but all side effects are manageable. I use cool gel pads at night which help the restless legs and hot flushes ,I get tired easily but other than that I'm doing very well indeed as the cancer is in remission .Enzalutimide in my case was used as first line treatment as I'm still hormone sensitive and as far as I'm concerned is a wonder drug .The fact my prostate was removed has helped it makes the cancer load less ,the mothership so to speak has been removed so the treatment can be more effective in fact there is an ongoing trial where advanced cancer patients who normally would not have their prostate removed are having them removed and treatment continued to prove the above .Enzalutimide is a remarkable drug for many men who respond to it .
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007