Long term side effects of enzalutamide

User

Posted 09 Jul 2018 at 17:28

hello all

Ive been on the Stampede J trial now for 42 months and I've suddenly started getting badly swollen joints (fingers, toes, feet, knees anelbows which are giving me very nasty pains)

I'm still taking the drugs Prostap (injection) and enzalutamide

The pains are sufficient to have stopped me running and also motorcycling. It's even painful to write.

i am taking painkillers and am awaiting x ray and blood test results.

My psa is still at .05 so no change there

i wondered if this was an expected side effect and whether anyone else has suffered it

Thankyou for you help

Paul

User

Posted 10 Jul 2018 at 04:57

Hi Paul,

I hope they can sort you out and make things easier for you.

Take care.

Steve

User

Posted 10 Jul 2018 at 07:40

Healey, contact your oncologist or nurse specialist for advice. Spurspark had the same problem - you could try searching for 'sausage fingers' on here.

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

User

Posted 10 Jul 2018 at 07:56

Dear Paul I hope you get answers ( and share) as you know Gary is on both abi and Enzo .Hes always had weak knees due to bone on bone and needs 2 knee replacements ,which he won’t have .as of yet no major others side effects only fatigue and weight ,but has only been on trial for 24 months
The recent weather can’t help either .
Best wishes
Debby

User

Posted 13 Aug 2018 at 12:16

That’s good news Paul. I have a vested interest 15 months into enzalutimide.

User

Posted 13 Aug 2018 at 12:43

Thanks for the update ,always good to hear positive stories.
Best wishes
Debby

User

Posted 08 Jun 2022 at 20:48

Hi Debby

great to hear that Gary is doing ok.

I have stopped the Enza now for 5 weeks. I did actually reduce from 4 to 2 about 6 months ago.

My Onco said that it might take 12 months to get out of the system. I had also read somewhere that stopping the enza straight away could cause some discomfort so that why I reduced to 2 tabs from 4.

I asked also about when might the psa start to rise again. There is unfortunately no answer to that one but I believe that it may be years after stopping taking the drugs- ie its not immediate.

I also received the results of a bone scan done 4 months ago (I'd have thought my GP might have reviewed this earlier) Unfortunately another side effect of Enza is it thins the bones and I am now recorded as having osteoporosis and now have started on Alendronic Acid plus Calcium D3 and recommended to do more Resistance Training. I do still walk/Hike and generally do 25 to 30 miles a week up and down our valleys.

I am still very weary - some days worse than others. Some days I struggle up hill and other I can jog up. I am hoping that eliminating the Enza will give me some more energy.

Generally life is still good and we both are still active.

All my best wishes to you too

Paul

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User

Posted 10 Jul 2018 at 04:57

Hi Paul,

I hope they can sort you out and make things easier for you.

Take care.

Steve

User

Posted 10 Jul 2018 at 07:40

Healey, contact your oncologist or nurse specialist for advice. Spurspark had the same problem - you could try searching for 'sausage fingers' on here.

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

User

Posted 10 Jul 2018 at 07:56

User

Posted 10 Jul 2018 at 12:43

Hi Lyn

thanks for your lead , I'll try and search it out.

Yes you are right about seeing my Onco or nurse and Ive already pulled my Onco meeting forward one month to Monday 16th.

I've had my blood tests done already for both my GP and my Onco and have accessed the results. Good news is that my psa is still running at .05 but bad news is that there are a few stats out of spec.

Thanks again

Paul

Edited by member 10 Jul 2018 at 12:45 | Reason: Not specified

User

Posted 12 Aug 2018 at 23:09

Just an update for you enzalutamide users.

I saw my Onco on 16 July and had a chat about the muscle pains I was experiencing.

In order to check if they were a side effect of the enzo she suggested I stop taking the tabs for 4 weeks (this being within the guides for the stampede trial)

Since then I've also had an appointment through my GP with a rheumatologist.

He diagnosed that I had Polymyaglia which is caused by a virus or trauma and can be treated with steroids.

So I'm now taking steroids which have certainly reduced my muscle pains. Im back hiking and should be back on the motorbike shortly.

I'm even pondering about entering the Manchester 10K next year - we shall see.

So it appears that the enzalutamide has not been a cause of the muscle pain and I will be restarting the tabs tomorrow.

I wish the best of luck with all you other enzalutamide users and everyone for that matte.r

Paul

Edited by member 12 Aug 2018 at 23:19 | Reason: Not specified

User

Posted 13 Aug 2018 at 12:16

That’s good news Paul. I have a vested interest 15 months into enzalutimide.

User

Posted 13 Aug 2018 at 12:43

Thanks for the update ,always good to hear positive stories.
Best wishes
Debby

User

Posted 13 Aug 2018 at 18:13

Hi Paul

I hope the enzo keeps on working for you.

Seems like a pretty good option at the moment.

Good luck.

Paul

User

Posted 30 Oct 2018 at 16:38

Just an update on things.
Since my last post I've had a meeting with a rheumatologist who has diagnosed Polymyalgia and put me on 15mg Steroids for 1 week then reducing by 1mg per month.
I became mobile again but still have the painful wrists and hands.

I restarted the Enzalutamide in August and that has not had any adverse effect although now in October I started getting real leg pains whilst continuing with hand pain.

I had my Onco appointment on 15 October and all was fine with the bloods. Psa was .06 still so that side seems ok.

I did however mention a sharp chest pain and hard breathing so was rushed round the system to have a blood test, ecg and Xray to check if I has a blood clot in the Lung. 1 hour later and the Onco told me that there was nothing to worry about.

Maybe I'm getting to be a bit of a hypochondriac but best to be sure.

I do seem to be getting muscle pains which perhaps might be due to wasting and overstretching.

Has anybody else have these experiences?

Edited by member 01 Nov 2018 at 09:49 | Reason: Not specified

User

Posted 05 Jun 2022 at 22:07

It seems like the time has come to stop taking the Enzalutamide which I have been on since February 2015 with excellent results. I do have another onco appointment tomorrow though.

It seems that the Stampede Test has finished and the report written so there is no more need to monitor plus I have been thinking of stopping for about 3 years in order to try and get a little normality back.

Whether the enzalutamide or the HT worked for me for at least so far (7.5 years) I dont know.

I will ask my Onco again but no-one really knows how effective it is. I think I have been fortunate that it has worked for me so far.

I think I am rambling a little because again I am entering an unknown time.

How is everyone who is taking the enzalutamide getting on, I would love to hear from you all.

I will write an update after my onco appointment tomorrow (Monday 6th).

Paul

User

Posted 06 Jun 2022 at 07:17

Hi Paul ,as you know about Gary’s story being on a similar path , we had the survey results and they look good but not sure if one drug has the same effects as taking the 2 . The main effect for Gary is the fatigue but he is younger than you and still working .
Do they know yet as to when the meds are stopped how long before 1.. they get out of the system to hopefully get back to no side effects and 2 .. when /if they are out of system does the Pca return .
At the moment Gary is continuing taking both ,he needs Both knees replaced but is reluctant to do so at the age of 62 in case he doesn’t / can’t return to work afterwards .
Good luck with the next stage of your journey and keep in touch
Best wishes
Debby x

User

Posted 08 Jun 2022 at 20:48

Hi Debby

great to hear that Gary is doing ok.

I have stopped the Enza now for 5 weeks. I did actually reduce from 4 to 2 about 6 months ago.

My Onco said that it might take 12 months to get out of the system. I had also read somewhere that stopping the enza straight away could cause some discomfort so that why I reduced to 2 tabs from 4.

I asked also about when might the psa start to rise again. There is unfortunately no answer to that one but I believe that it may be years after stopping taking the drugs- ie its not immediate.

I am still very weary - some days worse than others. Some days I struggle up hill and other I can jog up. I am hoping that eliminating the Enza will give me some more energy.

Generally life is still good and we both are still active.

All my best wishes to you too

Paul

User

Posted 08 Jun 2022 at 21:21

Originally Posted by: Online Community Member

Alendronic Acid

Did anyone mention to you about seeing the dentist & getting your teeth checked before starting the alendronic acid?

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

User

Posted 06 Jul 2022 at 21:17

Hello Lynne

thank you for your advice.

Yes I did have advice from my Onco and I have had had my teeth checked before taking the Alendronic.

I believe that is about ensuring any work is done before rather than after the tabs.

Paul

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