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Started Abiraterone - not working, or is it?

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User

Posted 21 Jan 2023 at 08:40

Hi Michael

Just read the link and gutted for ya bud as we roughly started our journey together and are of similar age and cancer stage.I hope the chemo isn't to rough on you and works it wacks the hell out of this awful thing.

Stay strong 💪 regards Phil

User

Posted 21 Jan 2023 at 08:48

Hi Michael,

Sorry it's not worked for you. It's a total bummer.

Habe they said which chemo you will get?

Mrs MAS

User

Posted 21 Jan 2023 at 08:58

Hello again Michael

Just a thought,has the boat sailed for you to switch to enzalutamide which I am on or I hear of these tablets called darolutamide being talked about on this forum rather than going straight to chemo.

Regards Phil

User

Posted 21 Jan 2023 at 20:55

Thank you Phil. I hope so too. I think it is too late to switch to Enz, the guidance I think says that at this point once one stops working there is no point going with the other. The other tablet I haven’t heard of but will have a look, thank you.

Thanks for your comment and thoughts, I hope you are doing well. We do have very similar routes into this thing. Please stay as well as you can

Michael

User

Posted 21 Jan 2023 at 20:56

Hi Mrs Mas, she said around 10 Doxetal cycles was the aim

best wishes

Michael

User

Posted 21 Jan 2023 at 21:36

Originally Posted by: Online Community Member

Hi Lyn

I had heard that rule but thought it was only if you had side effects that you could swap between them.

You are right that it is possible to change from abi to enza / enza to abi due to intolerable side effects, if done in the first 12 weeks. NICE also allows a change from abi to enza / enza to abi if it is clearly not working but again, it gas to be in the first 12 weeks (although perhaps some oncos would apply common sense if it was 13 / 14 weeks). Research shows that when a patient has been on one of them, once it fails the others will also fail very quickly. The same is not always true where abi or rnza fails immediately - we do have someone on here who failed with one and then had a sustained period of wellness with the other ... can't think who right now but I will try yo find the relevant thread. Certainly worth you asking whether a quick decision can be made to change the prescription before that next appointment.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 23 Jan 2023 at 10:08

Thanks Lyn, I've had a search for the thread but so far not found it.

Mrs MAS

User

Posted 10 Feb 2023 at 22:54

Further update, PSA 4 weeks later on 8.Feb shows a reduction to 5.55.

Don't undetstand it , but grateful.

Mrs MAS

User

Posted 11 Feb 2023 at 03:41

This is good news MrMas, he might have maybe just had a wee bit of inflammation or something similar but if the trend has turned downwards again then this must be good news for now. I think I said to you I was moving to Chemo. I had the first one, it wasn’t a pleasant first 3 days afterwards I have to say and stay feel queasy and sore but nothing good for you comes without some difficulty so hopefully it’s doing its work.

So happy your trend is back down on the Abiraterone, much more straight forward way for now.

Best wishes

Michael

User

Posted 11 Feb 2023 at 11:32

Mrs Mas happy to hear your husband’s psa is starting to come down long May it continue

ann

User

Posted 11 Feb 2023 at 12:00

Hi Michael

Thankyou, for now yes good news.

Good luck with rest of your chemo. Allan, my husband, has docetaxel chemo when first diagnosed and similar to you a few days after he felt rubbish but he managed to work as well. Take care

Mrs MAS

User

Posted 11 Feb 2023 at 12:32

Great news Melissa delighted to hear it.

User

Posted 11 Feb 2023 at 15:30

Really glad to hear this Mrs Mas. May have been a delayed response to treatment.

User

Posted 11 Feb 2023 at 15:31

My father had a similar experience with chemo. He seemed to be back to his normal self from day 8 until his next cycle. Keep strong.

User

Posted 28 Feb 2023 at 13:03

That's smashing news for you both

User

Posted 05 May 2023 at 19:43

12 weeks more on Abiraterone, PSA risen to 12. Seeing oncologist in 2 weeks to discuss.

Feeling very upset, there's nothing else left is there? Apart from cabitaxel?

Have heard a steroid change from prednisolone to dexa can help Abi work better, is it worth asking, I don't know.

Clutching at straws.

Mrs MAS

User

Posted 06 May 2023 at 09:25

Sorry to hear this hopefully when you see the oncologist something else can be done.

ann

User

Posted 06 May 2023 at 14:37

Sorry to read this Mrs Mas and fingers crossed for you that the oncologist can give you some ideas about a way forward with rising PSA. Hopefully they will re do some scans to have a wee look at what is going on. Take care and look after yourself and your husband

Best wishes

Michael x

User

Posted 07 May 2023 at 11:58

Hi Mrs Mas

Sorry to hear about the rising PSA.

I recall another member of the groups in a similar situation/presentation had mentioned the following trial which you could have a look at?

https://www.splashtrial.com/

User

Posted 07 May 2023 at 15:40

Never give up MAS ! So sorry to hear the news truly. Just keep at it and use us to vent at 😬

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