Hi all, got out of the habit of posting this year so back with a vengeance π
5 and a bit years down the line and the Decapeptyl jabs and Bical tabs are now starting to lose their effect.
3 consecutive PSA rises after my check up with the consultant this week so it appears to be time for a change of tack. Bicalutamide has been stopped, hopefully with a bit of Casodex withdrawal response.
Next up is a CT+AB scan plus a full bone scan looking to see what might be causing the rise.
Once the results are in, my approachable consultant would like to see me again, and thinks the way ahead will be either Enzalutamide or Abiraterone with Olaparib, and has given me handouts on both options to think about which way I might like to proceed.
I honestly haven't a clue so thought I would sound out opinion on here?
My understanding so far is Enza is more straightforward to take than Abi and also that the Abi/Olaparib with steroids route can potentially have more serious side effects (though I am aware not everyone gets hit with all the serious side effects). The overall effectiveness seems to be broadly similar from what I can find?
So, would anyone who is either on Enza or Abi after becoming resistant to first line HT care to share their thoughts on ease of use and/or side effects?
Edited by member 05 Nov 2024 at 13:03
| Reason: speelin and gramma :)
Good luck to everyone coping with the insidious big C |
User
My husband has just started on Abi + steroid (prednisone). We’ve worked out that the easiest way for us is to take the prednisone immediately after breakfast. In the evening he’s never in bed before 11, so we make it a rule now not to eat anything after 9pm (which would have been rare anyway), and he takes the Abi at bedtime. Seems to be fitting in well with our daily routine. ππ»
User
Hi
I was on Enza for 16 months until it started to fail I think it's the better of the too.
I was tested for olaparib but didn't have the gene so not eligible.
Regards Phil
User
Hi Steve, I went on to Enza Feb' 21 combined with Decapeptyl injections when my PSA started to rise plus 30 days of Bicalutamide, my PSA dropped very quickly and over the next years my dose went from 4 down to 2 tablets a day to help with fatigue and brain fog. Now thinking of adding a low dose steroid to stop the rise ( I'm only at 0.3 but it has been rising for 6 months) so idea to nip it in the bud early.
Hope this helps annoyingly people say how well I'm looking but honestly I feel as though I want to do things even if I have to do it slowly
DaveH
Edited by member 16 Oct 2024 at 15:09
| Reason: Not specified
User
Hi Steve
I’ve been on Abi for nearly 3 years now. I was G9 and was offered it as a first line treatment. Whilst I understand and agree with the comments around choosing Enza initially if offered the choice, I would have to say that the Abi has been pretty effective and straightforward for me. I take it when I get up for a pee in the middle of the night so I don’t need to wait to have breakfast in the morning. I take the prednisone with breakfast.
No significant side effects…
User
I've been on Enza for approaching 3 years now, supported by Decapeptyl injections every 6 months.
Long may it continue!
User
Sorry for the late reply Steve, just on holiday currently.
I just deal with the side effects mate, because compared to the alternative they are a walk in the park.
So my view is Vive Le Side Effects - it shows my treatment is working, giving me more time to spend with my family.
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Hi
I was on Enza for 16 months until it started to fail I think it's the better of the too.
I was tested for olaparib but didn't have the gene so not eligible.
Regards Phil
User
Hi Phil, I haven't got Braca mutation either but apparently it works with abiraterone regardless?
From the NICE website - "Clinical trial evidence shows that olaparib with abiraterone and prednisone or prednisolone increases how long people live and how long they have before their cancer gets worse compared with abiraterone alone. Olaparib with abiraterone and prednisone or prednisolone has not been directly compared with enzalutamide".
Shame there's no study comparing it with Enza π
Stay strong
Steve
Good luck to everyone coping with the insidious big C |
User
Hi Steve, I went on to Enza Feb' 21 combined with Decapeptyl injections when my PSA started to rise plus 30 days of Bicalutamide, my PSA dropped very quickly and over the next years my dose went from 4 down to 2 tablets a day to help with fatigue and brain fog. Now thinking of adding a low dose steroid to stop the rise ( I'm only at 0.3 but it has been rising for 6 months) so idea to nip it in the bud early.
Hope this helps annoyingly people say how well I'm looking but honestly I feel as though I want to do things even if I have to do it slowly
DaveH
Edited by member 16 Oct 2024 at 15:09
| Reason: Not specified
User
Thanks Dave, just trying to compare the health implications between the two regimes. Both seem to have associated blood pressure/heart/stroke possibilities. I'm already on statins for cholesterol, a family trait, so just ordered a blood pressure monitor to keep a record π
Good luck to everyone coping with the insidious big C |
User
A couple in favour of Enzalutamide (Xtandi) then?
Anyone out there on Abiraterone (Zytiga) finding it straightforward to take (seems a little more awkward what with the steroids as well) but supposedly has less side effects than Enza?
Good luck to everyone coping with the insidious big C |
User
Hi Steve
I’ve been on Abi for nearly 3 years now. I was G9 and was offered it as a first line treatment. Whilst I understand and agree with the comments around choosing Enza initially if offered the choice, I would have to say that the Abi has been pretty effective and straightforward for me. I take it when I get up for a pee in the middle of the night so I don’t need to wait to have breakfast in the morning. I take the prednisone with breakfast.
No significant side effects…
User
I've been on Enza for approaching 3 years now, supported by Decapeptyl injections every 6 months.
Long may it continue!
User
How do you find the often reported fatigue and "brain-fog" Paul?
Good luck to everyone coping with the insidious big C |
User
Thanks Kev, there do seem to be less side effects reported with Abi compared to Enza π
Good luck to everyone coping with the insidious big C |
User
My husband has just started on Abi + steroid (prednisone). We’ve worked out that the easiest way for us is to take the prednisone immediately after breakfast. In the evening he’s never in bed before 11, so we make it a rule now not to eat anything after 9pm (which would have been rare anyway), and he takes the Abi at bedtime. Seems to be fitting in well with our daily routine. ππ»
User
Sorry for the late reply Steve, just on holiday currently.
I just deal with the side effects mate, because compared to the alternative they are a walk in the park.
So my view is Vive Le Side Effects - it shows my treatment is working, giving me more time to spend with my family.
User
My OH took both together as a trial , they totally wiped out his strength and gave him extreme tiredness . This was nearly 9 yrs ago . The trial concluded 3 ish yrs ago and found taking both didnβt give any more benefits than one . He stopped the Enzo 2 years ago and has regained his life back as nowhere near as tired and heβs now back doing DIY ! Win win situation.
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Hi all, had a recent meeting with the consultant to make a decision. Having sought opinions on here, and at my local support group, I thought I should maybe ask the expert π In her experience, she has more negative feedback from patients on the Abi/Ola/Steroids route than those taking Enza. She thinks Enza would probably be the preferred option for me? I do have the option to change in the first 3 months though if I find them too much of a problem. So, just a quick question to those on Enza (which I will also ask at my "New Patient Talk" on Friday), how long after starting on Enza did it take for the "brain fog"/fatigue side effects to kick in (a few days or longer)? And are they such that it makes any driving problematic?
Trying to stay positive π€
Good luck to everyone coping with the insidious big C |
User
Hi,
I had been on Eligard semestral for 7 years before my PSA started to climb. My doctor then put me on Abiraterone.
After six weeks, the PSA had halved, which was good news. The next blood test was after two months and unfortunately my PSA was now rising fast. Had another test after a further month, which confirmed the continued rise. My medic now had further scannings of my bones and the rest of me via CT, PET and Scintigraphy imaging.
This revelled a tumour in the bladder. I will now have a biopsy at the beginning of the new year. If the biopsy shows any malignancy, I will be operated straight away. I think the result is positive, as my Doctor has prepared me for an operation.
The reason that the Abiraterone did not work for me was unfortunately that I was resistance to this second generation of hormonal treatment. Bad luck, as only about 15% of patients have this resistance. Strangely enough, I am told to continue with Abiraterone/Prednisone until further notice even if it is not working for me.
This combo of medicine gives me a lot of unwanted side effects like hot flashes, constipation, muscular pain, insomnia and sometimes somnolence to mention but a few. I would welcome a stop of this duo after the operation. Perhaps I will get chemo instead, which I believe is not very pleasant either. Or it might be better to stay with the devil I know?