Husband has stage 4 prostate cancer, spread to seminal vesicle, pelvic lymph nodes and one bony met in pelvis. Gleason 9 (5+4). Diagnosed April 2022 and on Prostap injections 3 monthly and Enzalutamide tabs 160mgs daily since July 2022. Also RT to prostate in October 2022.
PSA has gone down really well from 54 at start to latest 0.73. Last couple of blood tests Alkaline Phosphatase had been slightly raised and oncologists are monitoring this.
He was unwell on Monday night with nausea and dizziness and then all day on Tuesday the same. He did vomit but not much and felt better by bedtime Tuesday. Woke up yesterday and felt fine. I made a cup of tea and he drank it in bed. Afterwards sitting on the side of the bed talking to him he suddenly stopped responding, his eyes rolled back in his head, then came back to normal but he still wasn't responding although eyes were open. Then noticed mouth was twitching a bit and hands also. Eventually he started responding to me again but seemed to have no idea what had happened then realised he had wet the bed. Called oncology emergency number and spoke to (?) specialist nurse who advised could be due to Enzalutamide but to go to A&E as precaution.
Attended local A&E (different hospital to oncology) who were very good, did bloods, ECG, head CT scan etc and didn't find anything worrying at all. They discharged him and advised to contact oncology again.
Then this morning before had chance to call oncology he had another 'seizure' (although this time no eyes rolling, twitching or loss of bladder control). Got him onto a chair and he then 'zoned out' again for a minute before coming round properly. Called oncology and spoke to a different nurse who didn't seem to think Enzalutamide likely culprit as had been on it since July 22. Advised we need to speak to our own team and she will email them. Am currently awaiting a call back for further advice. In the meantime 'zoned out' again at lunchtime, unresponsive etc. Have been advised to pause Enzalutamide for time being until decision from specialist team. Also of course no driving etc although he is so washed out he wouldn't want to anyway and I drive so not a problem.
Has anyone else had any similar experiences to this? Am obviously very worried and a bit at a loss to understand what is going on. Don't really want him to have to stop Enzalutamide as has been doing to well on it but the potential alternative causes are probably worse. Need some reassurance please if anyone can give it.
thank you.