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Spot on spine

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User
Posted 22 Nov 2023 at 19:41

Hi all,

My dad was told a couple of weeks back that there is now a spot of cancer towards the top of his spine. He's been put back on HT which has bought his PSA down, he's feeling fine in himself although not over the moon on being back on HT but realises he has no choice.

My question is does anyone have a rough idea about long he's likely to be with us. He has a carefree attitude and isn't really interested in a prognosis, he's all for just getting on with life (fair play to him he's done just that in the 9 years since he was diagnosed) but I'd rather know where we are.

His consultant says his only option for treatment if HT fails will be a course of chemo due to the drugs he had at the start via the stampede trial arm J (abiterone) - does that sound right? 

Any useful info would be gratefully received. I think I've updated my bio with all his facts, although I'm not really sure what I'm doing!

Thanks 

Edited by member 22 Nov 2023 at 22:41  | Reason: Not specified

User
Posted 23 Nov 2023 at 09:07

Hi Anj, you're dad has done very well coming upto 10 years since the original diagnosis. Looks like the HT and abiterone flattened the cancer previously and resumption of HT is reducing its impact again.

I'd suggest he continues doing what he's doing, whatever that is he seems to be doing it right.👍 Prognosis is a difficult game as most of us on here recognise.

All the best supporting your dad with the ongoing treatment path.

 

 

User
Posted 23 Nov 2023 at 15:17
If he only has one spot I would be asking why it can't be irradiated before it causes issues in his spine.
User
Posted 23 Nov 2023 at 17:25

Although the current rules are only one course of Abiraterone allowed per person, that was due to the initial high cost which has massively reduced over the last year due to the patent having expired and many unbranded versions having become available. You would think this would trigger an automatic reappraisal of a drug which was limited by initial high cost but it doesn't. However NICE has been under a lot of pressure to fix this, and it might happen in the next year.

Some people are paying for it privately now which I heard is around £250/month. There's also been some discussion about half dose also being effective in some men.

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User
Posted 23 Nov 2023 at 09:07

Hi Anj, you're dad has done very well coming upto 10 years since the original diagnosis. Looks like the HT and abiterone flattened the cancer previously and resumption of HT is reducing its impact again.

I'd suggest he continues doing what he's doing, whatever that is he seems to be doing it right.👍 Prognosis is a difficult game as most of us on here recognise.

All the best supporting your dad with the ongoing treatment path.

 

 

User
Posted 23 Nov 2023 at 15:17
If he only has one spot I would be asking why it can't be irradiated before it causes issues in his spine.
User
Posted 23 Nov 2023 at 17:25

Although the current rules are only one course of Abiraterone allowed per person, that was due to the initial high cost which has massively reduced over the last year due to the patent having expired and many unbranded versions having become available. You would think this would trigger an automatic reappraisal of a drug which was limited by initial high cost but it doesn't. However NICE has been under a lot of pressure to fix this, and it might happen in the next year.

Some people are paying for it privately now which I heard is around £250/month. There's also been some discussion about half dose also being effective in some men.

User
Posted 23 Nov 2023 at 21:57

Originally Posted by: Online Community Member
If he only has one spot I would be asking why it can't be irradiated before it causes issues in his spine.

Thank you for your reply, I did ask the consultant that question, his answer was that it would be pointless at the moment as the prostate cancer would keep being sending it back there and that the best way to slow it down was to get his psa under control. We took his word for that, maybe we shouldn't have. Hopefully his psa will continue to fall now he's back on HT.

 

 

User
Posted 23 Nov 2023 at 23:17

Originally Posted by: Online Community Member

Although the current rules are only one course of Abiraterone allowed per person, that was due to the initial high cost which has massively reduced over the last year due to the patent having expired and many unbranded versions having become available. You would think this would trigger an automatic reappraisal of a drug which was limited by initial high cost but it doesn't. However NICE has been under a lot of pressure to fix this, and it might happen in the next year.

Some people are paying for it privately now which I heard is around £250/month. There's also been some discussion about half dose also being effective in some men.

 

Thank you for this, I hadn't realised that only being offered one shot at abiterone was for financial reasons, I presumed it was clinical.  I'll look into the possibility of a private subscription.

 

 
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