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Putting my mind to rest

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User
Posted 17 Jan 2023 at 19:09

It just been suggested that add enzalutamide to my treatment. I wondered what side effects people had experienced 

User
Posted 18 Jan 2023 at 08:45

Hi Percy 

I've been on Enzalutamide for around 6 months now,hot flushes/sweats mainly at night this time of year,bone ache & pins and needles funny feelings that are hard to put in writing,I plan my day and do activities as normal but rest in-between have the occasional pain killer but all things considered being on stage 4 advanced prostate cancer I live a relatively normal life thanks to this drug.

Regards phil

User
Posted 18 Jan 2023 at 18:28

Hello 

I have been on Enzalutamide for 31 months I have all the side effects  mentioned and restless legs BUT they are all manageable .For me the benefit of this drug outweighs all the side effects all my recent scans are clear and my PSA is undetectable .I find cool gel pads at night are very helpful with hot flashes and restless legs I lay on one and put one on my pillow. I have arthritis anyway somewhat exacerbated by Enzalutamide but I keep active and this helps. 

 

User
Posted 10 Mar 2023 at 11:57
Hi Percy,

I have been on Enzalutamide for 2 years now and its doing a fantastic job at keeping my PSA down but the fatigue is a constant. I think keeping active as much as possible is helpful which you obviously are doing with the sheep.

I had 20 sessions of RT and by the third week they really had a massive effect on my energy levels (in a negative way!). By the end of the fourth week I gave up on trying to do any useful work. My memory is that once it finished my energy levels did bounce back quite quickly to my enzo-norm. Sorry this is not more positive but at least the RT itself was not too bad, hats off to the great staff at the hospital.

Hope it doesn't hit you too hard, Steve

User
Posted 15 Mar 2023 at 12:29
Hi Percy, I've been on Enzalutamide since Feb 21, side effects: no painkillers!, usual flushes, tiredness, forgetfulness, but helped by oncology reducing dose to 3 tablets, otherwise feeling good I can get about if I time things right and don't do to much, PSA down below 0.1 and appointments two monthly now. So in short I'm over the moon with the drug
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User
Posted 18 Jan 2023 at 08:45

Hi Percy 

I've been on Enzalutamide for around 6 months now,hot flushes/sweats mainly at night this time of year,bone ache & pins and needles funny feelings that are hard to put in writing,I plan my day and do activities as normal but rest in-between have the occasional pain killer but all things considered being on stage 4 advanced prostate cancer I live a relatively normal life thanks to this drug.

Regards phil

User
Posted 18 Jan 2023 at 18:28

Hello 

I have been on Enzalutamide for 31 months I have all the side effects  mentioned and restless legs BUT they are all manageable .For me the benefit of this drug outweighs all the side effects all my recent scans are clear and my PSA is undetectable .I find cool gel pads at night are very helpful with hot flashes and restless legs I lay on one and put one on my pillow. I have arthritis anyway somewhat exacerbated by Enzalutamide but I keep active and this helps. 

 

User
Posted 09 Mar 2023 at 16:53

Been on enzalutamide now for 7 weeks. Had almost no side effects to begin with but now hit me with a bang. I am getting increasingly hot flushes, which  are manageable. I am up early at 6.30 am. Although retired from the hospitality business we have a small Farm with sheep so I am on the go .I do about 10000to 14000 steps a day. I am now whacked at at 1pm and tend to go for a nap until 4.30 pm . The last 3 days my lower legs and feet feel cold even in bed .will these side effects get better 

I start radiotherapy next week once a week for 6 weeks I have read that this can give you more fatigue. Any tips

 

User
Posted 10 Mar 2023 at 11:57
Hi Percy,

I have been on Enzalutamide for 2 years now and its doing a fantastic job at keeping my PSA down but the fatigue is a constant. I think keeping active as much as possible is helpful which you obviously are doing with the sheep.

I had 20 sessions of RT and by the third week they really had a massive effect on my energy levels (in a negative way!). By the end of the fourth week I gave up on trying to do any useful work. My memory is that once it finished my energy levels did bounce back quite quickly to my enzo-norm. Sorry this is not more positive but at least the RT itself was not too bad, hats off to the great staff at the hospital.

Hope it doesn't hit you too hard, Steve

User
Posted 10 Mar 2023 at 12:05

Thanks for the reply. Not what I wanted to hear.

Enzonorm

Love it, my sort of humour 

User
Posted 15 Mar 2023 at 12:29
Hi Percy, I've been on Enzalutamide since Feb 21, side effects: no painkillers!, usual flushes, tiredness, forgetfulness, but helped by oncology reducing dose to 3 tablets, otherwise feeling good I can get about if I time things right and don't do to much, PSA down below 0.1 and appointments two monthly now. So in short I'm over the moon with the drug
User
Posted 15 Mar 2023 at 12:34

Thanks

What time of day do you take your tablets?

User
Posted 15 Mar 2023 at 13:17
Hi

I take my tablets between 9am - 10am just before my breakfast

 
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