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Enzalutamide issues

User
Posted 08 May 2024 at 14:49

Hi I'm new to this forum but looking for some advice. My husband had prostate cancer in 2016, he had a lot of radiotherapy and zoladex for 2 years. In 2020 he was having excruciating back pain which was misdiagnosed 7 times at our A&E, they then gave him an MRI and discovered he had metastatic cancer on his spine, rushed to Queens hospital London where he had major surgery, then chemo, then Cyberknife radiotherapy and they put him back on Zoladex. Last year he got Lymes disease from a tic bite and was really poorly (not sure its connected) then his PSA kept rising, went to 19 and after another CT/PET scan discovered another growth on a different vertebrae. He was given more Cyberknife radiotherapy and put on Enzalutamide 4x daily. He hasnt felt well since and has terrible restless legs mainly when he sits down or lays down... he's going to the toilet several times a night and has terrible pains in his hip and knee which keep him awake. His Oncologist has lowered the pills to 3 a day but he's still unwell. He is tempted to stop the medication! Has anyone come off them? Has anyone suffered this much whilst on them? We are not even sure that its all down to the pills but something is not right. His PSA last month was at 2.4 so still higher than we would like but he only had the treatment in early December. Sorry for the podcast but trying to give as much detail as possible. Many thanks

User
Posted 09 May 2024 at 07:44

Hi 

I was on enza for approx 18 months before it began to fail,side effects of the drug are many and can vary to person to person,I know it can be difficult to understand if it's the drug that's causing the discomfort or the cancer,my mind set is it's the drug and if my PSA is low which your husband's is that backs it up.

Hoping this helps and your husband copes with the issues he has.

Phil 

 

User
Posted 09 May 2024 at 13:46

Hi
I went on Enzalutamide early '21, luckily for me no real side effects only fatigue but it took Enza about 9 months to really knock my PSA down to it's lowest, right now I'm on 2 tabs a day only.
Hope this helps
DaveH

Edited by member 09 May 2024 at 13:47  | Reason: spelling

User
Posted 10 May 2024 at 11:05

Thank you Phil, I'm hoping its the drugs and we think he has long Covid which doesnt help either! I hope you're doing ok.

User
Posted 10 May 2024 at 11:08

Hi Dave, thank you, its good to know that you're doing ok on 2 tablets a day, I guess he's only been on them for 6 months so we hope his PSA will come down further soon and we can reduce the dose. Hope you're doing OK, it sounds like the drug is working for you which is great.

User
Posted 10 May 2024 at 11:09

So have they put you on another drug Phil? You say it failed after a while?

User
Posted 10 May 2024 at 20:47

My dh has been on enzalutamide since the end of last year. It is making him very tired, he gets a lot of headaches and feels muzzy a lot of the time. He’s been convinced the cancer has spread to his brain, but I’ve told him it’s the drugs. He’s finding the hot flushes quite difficult too, he says he feels he’s going to pass out he gets so hot. No bone pain though. They reduced him to 3 tablets instead of 4 but he’s thinking of asking to go down to 2. 
Psa went down to 0.04 very quickly (he’d also started zoladex a few months previously) so the drugs are working, that’s the main thing. 

User
Posted 12 May 2024 at 08:36

Hi Jo

Unfortunately I'm now on chemo (docetaxel)7th cycle next week but coping well and PSA on the decline.

Regards Phil 

 
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