Advance Prostate Cancer Treatment

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I was diagnosed with prostate cancer in 2016. I had the usual radiotherapy and 3 year hormone treatment and all was going well with PSA less that 2.0 until summer 2024 when the PSA started to rise and tests showed that I had a metastases on spinal vertebra C7.

Initally I was identified as a candidate for high intensity radiotherapy but after some careful modelling it was decided that the radiotherapy would not be safe.

I had an initial injection of diagarlix on 18th October. This was the one and only dose because I later switched to relugolix.
Started Adcal-D3 and Alendronic tablets on 27th October
On 17th November I took my first enzalutamide
Early on 18th I was being uncontrollably sick and suffering diarrhoea. My wife called 999 and an ambulance was despatched to take me to A&E from which I was discharged mid afternoon. I was responsive and aware throughout.
Enzalutamide was immediately stopped and the decision taken to give me apalutamide.
On 26th November I started on relugolix
Before starting the apalutamide on 6th March I had to stop taking apixaban (for a heart condition) and switch to edoxaban.
On 12th March I got up to go to the loo in the middle of the night but felt very, very unsteady. Following discussion with the Oncology team I paused the apalutamide.
On 24th March my wife found me in bed having again suffered from vomiting and diarrhoea. Initially I was responsive but I then sufferred a seizure. Once again an ambulance was called which arrived within a couple of minutes and I was taken to A&E.
Very reasonably I have been told I must not drive and must report the facts to DVLA

Altogether a most frightening experience and I would be interested to know if anything similar has happened to anyone else.

Alwayshope 2 days ago

Hello Ever hopeful . You have been through the mill and I am not sure whether you will find anyone who has had a similar experience but by replying I am bumping your thread up. My husband has a head injury and a history of TIA's so I was concerned about the risk of seizure when he was put onto the second generation antiandrogens and in his case it was felt that Enzalutamide had the lower risk in crossing the blood brain barrier compared to Apalutamide. The Apalutamide has a half life clearance of around 7 to 10 days after stopping it. Seizures are a rare but reported event with these drugs. He has also recently suffered from pulmonary embolisms and been put onto Apixaban and I have noticed that he suddenly forgets what he is doing so am wondering what effect the DOAC's have on the brain. He is also going to be switched onto the Relugolix from Prostap which he has been taking since July 2020 when he was first diagnosed with prostate cancer. Trying to manage cancer treatments with different co morbidities can be challenging for the experts particularly as men are being kept alive for a lot longer thanks to the techniques available.

I hope that you are feeling better now.

Ever hopeful 2 days ago in reply to Alwayshope

Hello Alwayshope. It does seem that I am extremely sensistive to the strong hormones given to treat advanced prostate cancer. Triptolerin I never even noticed but these are something else. I am also begining to wonder if even relugolix is problematic. Since my episode in November I have started to have a bit of double vision when the eyes were tired and dry but since this latest episode I have noticed it more.

I have relatively long term experience of Apixaban which I have been on since June 2020, when I had an aortic valve replacement, until 27th Feb when I was switched to edoxaban in order to allow me to take apalutamide. If it was creating problems I definitely was not aware of it.

I have to say I am starting to wonder whether the drugs are worth it, not that I want to go but this isn't living and the seizure experience was simply terrifying for my wife.

Events are certainly challenging my pen name.

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