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New here! Bicalutimide worries

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User
Posted 26 Mar 2021 at 16:01

Hello All,


I was diagnosed with PC back in November 2020 after a short string of high PSA readings.  I've elected for a radical prostatectomy and that's coming up in a few days.  I'm 64 and my dad died of PC in 2005. Meanwhile I've been taking bicalutimide and tamoxifen while a few 'red herrings' (my consultant's words) were checked out and proved to be non cancer related.  That was good news so we can crack on and attack the cancer!


I'm keen to know if anyone else has suffered the following side effects which I believe come from bicalutimide.  Pretty soon after starting with it I had swelling in my right ankle and lower leg which crept up to the knee which is now inflamed and makes it difficult to walk far.  That's a real pain because it was my main exercise.  The other thing I've noticed these last few weeks is low energy and just not feeling as strong I should be.  Never been an athlete, but always been pretty robust.  Just wondering if this is unusual.  If someone else has had similar, did things return to normal once bicalutimide was withdrawn?  I also take meds for high blood pressure and the GP has changed this around to include a different diuretic which has reduced the swelling slightly.


Sorry, a lot in there.  I'm still at the stage of curious about a lot and know little.


Cheers


Kevin

Edited by member 26 Mar 2021 at 18:48  | Reason: Not specified

User
Posted 29 Mar 2021 at 19:06

Very best of luck tomorrow - hope all goes well for you

User
Posted 29 Mar 2021 at 22:21
Hi. I first had Bicalutamide 150mg per day for 11 months about 5 yrs ago. That was the start of agonising knee pain and swelling and fluid removal which was simply put down to Osteoarthritis. Even after coming off it it took years to settle down even on maximum painkillers. Sadly as I’m now incurable I’ve had to start injectable HT preceded by 4 weeks of Bicalutamide. Oh my god the flare in my knees again ........ however my GP never heard of it despite being on the side-effects list. Now it’s finished things are settling down to normal again ( severe pain )
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User
Posted 26 Mar 2021 at 16:21
Fatigue is an extremely common side-effect of bicalutimide. It does wear off once you stop taking it. I can’t comment on the swelling - that’s not a side-effect I experienced myself. HT can have a huge range of different side-effects and everyone experiences a different set of them. I had absolutely maddening skin itches in my lower legs!

Very best of luck for your surgery,

Chris
User
Posted 26 Mar 2021 at 16:44

It may be the tamoxifen causing the swelling - tamoxifen does come with a blood clot risk so it may be worth confirming nothing nasty has happened in your calf

User
Posted 29 Mar 2021 at 16:16

Thanks for your responses and best wishes guys.  It's really useful to understand how these things affect others.  I did have a doppler scan to rule out a blood clot.  I think the amount of swelling concerned the urologist and he booked one straight away within the hour!  Fortunately it was just fluid and I've since had an MRI (results awaited) on the knee area.


Surgery is tomorrow and I hope that sees the happiness curve bottom out before climbing.  Just feeling pretty stiff, slow and tired at the moment.  Nothing to worry about I'm sure, and things will get better when the bicalutimide and tamoxifen are withdrawn.  Meanwhile, it is a small price to pay if they are doing what was planned and holding back the cancer.


Thanks again and best wishes


Kevin

User
Posted 29 Mar 2021 at 19:06

Very best of luck tomorrow - hope all goes well for you

User
Posted 29 Mar 2021 at 22:21
Hi. I first had Bicalutamide 150mg per day for 11 months about 5 yrs ago. That was the start of agonising knee pain and swelling and fluid removal which was simply put down to Osteoarthritis. Even after coming off it it took years to settle down even on maximum painkillers. Sadly as I’m now incurable I’ve had to start injectable HT preceded by 4 weeks of Bicalutamide. Oh my god the flare in my knees again ........ however my GP never heard of it despite being on the side-effects list. Now it’s finished things are settling down to normal again ( severe pain )
 
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