I have advanced prostate cancer with a met on C7. In line with NICE guidelines I was put on Relugolix (which has been fine) along with enzalutamide and alendronic acid which resulted in my first visit to A&E in November 2024 suffering nausea and incontinence. I was taken off both drugs and put on apalutamide which resulted in a second visit to A&E in March 2025 suffering a seizure which was put down to the apalalutamide. The result is that my driving licence was taken away.
One of the known side effects of apalutamide is a 1 in 100 chance of seizure!
I had a third visit to A&E in May 2025 suffering similar but milder symptoms to those exhibited in March. It was noted that my blood pressure was very low so there was doubt as to whether this was a vagal episode or a further seizure. I am pretty confident that this was a vagal event because I had been suffering balance and stability issues when getting out of bed in the mornings but the doubt over the diagnosis could mean an even longer wait to get my licence back.
NICE guidelines state that following a first seizure you should be seen by a neurologist within two weeks. My appointment came through afer tthree months and since then I have had to wait a further three months for the tests that were ordered which I hope will prove that it really was apalutamide and not an epilectic seizure. Something for which I have no family history.
I'd like to make it absolutely clear that I don't blame my oncology team, once they have made the diagnosis the actions they have to take are laid down by NICE.
A 1 in 100 chance of a side effect may not seem very significant but I think that when the side effect has such a drastic effect on life as does a seizure then a bit more care and warning are required. I also wonder if it was wise, after enzalutamide put me in hospital to try another drug of a similar type.
As a result of having a cancer which has spread to the bones I'm already on a slippery slope but I have had to cancel two holidays in the last 18 months because outstanding tests have meant that I could not get travel insurance and the lack of a driving licence is just adding to the pain.
I know from reading the comments made by others that many have had worse experiences but whilst I feel for them I am now emotionally very ragged and very fed up.
Hello Ever hopeful
I can understand just how you feel with that journey already behind you. Liz (johnam) has mentioned "Maggie's" and here's a link to find your local branch - "Maggie's". I would also advise you to call our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) as they will be able to offer you some further help and support.
As for the delay in your test/results have you contacted your hospital PALS (Patient Advice and Liaison Service) to try and speed things up. Clearly this delay is adding to your emotional issues.
I do hope this helps - if I can do anything else for you please do get back to me.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hello Ever hopeful
I know what you mean about PALS! Have a look at this - it may help.
Devon is a paradise compared to where I live in Oldham, I can still see one of "the dark satanic mills" out of my window - although I agree Devon is large and you can be isolated from many services.
I wish you well with your meeting in Torquay.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
