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8 months on abiritone PSA beginning to rise

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User
Posted 26 Sep 2016 at 08:48
Dear All

Originally diagnosed in 2010 PSA 29.8 put on casodex. PSA reduced, then began to rise. Then Radiotherapy, PSA dropped again to 0.0.

Really though great it's all over ! How wrong I was. PSA rose again to 100. Informed my onlly option was Chemotherapy

, frightened beyond belief, but got through 10 sessions and PSA down to 0.1.

That was September 2015 things fine until January 2016, after a second bone scan, found further spread into my bones.

PSA had risen agin to 80.0. Told in February this year to start Abiritone along with steroids. PSA dropped quite dramatically to 0.6 then 0.7 and just had result ,risen to 1.0. Understandably I'm beginning to get concerned that here we go again, is it going to rise further and come to the end of its effectiveness ? and if so what next ?

Family and love ones plus my oncologist say things are fine and not to worry. But can't get it out of my head, here I go again, with the greatest respect to the onco and staff, I have been told this before.

Grateful if anyone out there can give me any assurances or similar experiences and how they have coped.

Kindest Regards To All

Alan

User
Posted 26 Sep 2016 at 13:56

Alan, I'm quite puzzled by your story. Abiraterone is normally prescribed with Prednisolone in 30 day chunks, with a blood test before each re-prescription. Has your PSA been steadily rising each month or showing variability? The advice I have been given is that PSA alone is not the sole measure. The Onco will look at your general state of health, your full blood readings and your PSA level. I'm at 3.4 on the same regime, and certainly not panicking although I have been seeing a gradual rise over recent months with some ups and downs along the way. I imagine in a few months chemotherapy will be my next option. That should buy another couple of years of so, then there are other drugs to try. So the way to look at it is - how can I buy some more time, given that with current knowledge a cure seems impossible? For most of us there are several options after Abiraterone.

Stay positive and make sure you're in charge. If you think another scan would help judge progress or lack of it re your Mets, then press for it. If you're not happy with your present Onco, get your GP to refer you for a second opinion elsewhere. It's your right.

AC in Northants

User
Posted 27 Sep 2016 at 16:40

Alan, just a small footnote after seeing my oncology nurse today - my PSA has gone down from 3.4 to 2.9, so my thought of going on to chemo this year was a load of tosh. In fact, I was told, probably I'd be on Abi until my PSA rises to its opening figure of nearly 15, three years ago. I was also told that lots of blokes are on Abi for as much as FIVE years. So be prepared for variability and a long haul and don't be concerned about some upward drift, just so long as you don't experience a big leap in PSA.

Hope that helps a bit.

AC

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User
Posted 26 Sep 2016 at 13:56

Alan, I'm quite puzzled by your story. Abiraterone is normally prescribed with Prednisolone in 30 day chunks, with a blood test before each re-prescription. Has your PSA been steadily rising each month or showing variability? The advice I have been given is that PSA alone is not the sole measure. The Onco will look at your general state of health, your full blood readings and your PSA level. I'm at 3.4 on the same regime, and certainly not panicking although I have been seeing a gradual rise over recent months with some ups and downs along the way. I imagine in a few months chemotherapy will be my next option. That should buy another couple of years of so, then there are other drugs to try. So the way to look at it is - how can I buy some more time, given that with current knowledge a cure seems impossible? For most of us there are several options after Abiraterone.

Stay positive and make sure you're in charge. If you think another scan would help judge progress or lack of it re your Mets, then press for it. If you're not happy with your present Onco, get your GP to refer you for a second opinion elsewhere. It's your right.

AC in Northants

User
Posted 27 Sep 2016 at 16:23
Hi AC

You are quite right of course,I am also on prednisilone with monthly blood tests. It's just that I'm probably being a bit paranoid after being told in the past that all is fine then up goes the PSA level. I was told after 37 sessions of Radiotherapy that I was in remission,Then to be told my PSA had risen after 12 months and I had to have chemo. After 10 sessions it had gone down to 0.1. Over the moon of course,then 4 months later to be told it had gone up to 80 then put on Abi.

Reassuring to see that you are managing well on a PSA level of 3.4 so I take it I'm being a bit pessimistic! !! Silly Me ! !

Thank you for your feedback.

Wishing you well always

Alan in Milton Keynes

User
Posted 27 Sep 2016 at 16:40

Alan, just a small footnote after seeing my oncology nurse today - my PSA has gone down from 3.4 to 2.9, so my thought of going on to chemo this year was a load of tosh. In fact, I was told, probably I'd be on Abi until my PSA rises to its opening figure of nearly 15, three years ago. I was also told that lots of blokes are on Abi for as much as FIVE years. So be prepared for variability and a long haul and don't be concerned about some upward drift, just so long as you don't experience a big leap in PSA.

Hope that helps a bit.

AC

User
Posted 27 Sep 2016 at 20:58

AC
That's really great ! Take it from me chemo is no joyride, you won't miss anything there.
The fact there are lots of people on Abi for 5 years is really assuring.
Take care
Alan

 
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