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Intermittent hormone therapy and Abirateone

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User
Posted 27 Apr 2025 at 15:29

I have stage 4 cancer with low volume lymph node metastases on PSMA PET scan. I have bee receiving Prostap and Abiraterone treatment for 4 years and my PSA has been undetectable. However I have been suffering from extremely severe fatigue which means I have virtually no quality of life. In discussion with my oncologist we have decided I should try intermittent hormone therapy in the hope this may improve my quality of life. However because of the way Abiraterone is funded, even though much cheaper generic forms costing the NHS much less are now available, I will not be able to restart this. He suggested I look into self funding private care but this would be prohibitively expensive at £2000 - £3000 per month. One of the Prostate Cancer UK specialist nurses told me she was aware of some men in this situation who were staying as NHS patients but paying the NHS for the Abiraterone. If anyone is doing this I would be very grateful to hear from you and the name of the hospital Trust  you are under.

With thanks for any help.

User
Posted 27 Apr 2025 at 22:49

I was talking with someone funding his own Abiraterone.

The generic is much less than you mention, but although he's being treated on the NHS and his NHS oncologist approves of him having the Abiraterone (and thinks everyone in his situation should be getting it), but he had to find a private oncologist to prescribe the Abiraterone. Initially he had to have 2 weekly blood tests and consultations to make sure his liver was handling it OK. This worked out around £1000/month for the drug and private tests and consultations. I haven't asked him recently, but I believe the frequency of tests and consultations reduces when it's been established the body is coping with it OK.

If you went this route, you might not need as much testing, given you've been fine on it for 4 years already.

 
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