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Started Abiraterone - not working, or is it?

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User
Posted 27 Nov 2022 at 12:33

Hi all,

Started a new conversation as my husbands oncologist has started him on abiraterone. He was on bicalutamide after 3 years on prostap but it didn't work for long. 

My bio is up to date.

He has a bone scan next week.  

As he is diabetic I thought he'd be given enza so that is what I researched. 

If anyone has any experience of abi, please let me know. 

Edited by member 27 Feb 2023 at 14:59  | Reason: Not specified

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 04 Dec 2022 at 19:12

Thanks for your replies, gents.

Chris J, you are right if course, I-run is on a Abi.

 

Mrs MAS

User
Posted 15 Dec 2022 at 20:59
Chris

You’re correct - still available in Scotland but my oncologist recently advised me that I wouldn’t now meet the criteria ie requires at least 3 bone mets or spread to lung/ liver.

I guess I was lucky to get when I did!

User
Posted 16 Dec 2022 at 03:23
Hi Mrs MAS I hope the Abiraterone works well for your husband. I read many stories of a quick drop in PSA. I am on it but it hasn’t done the job for me and has effectively failed after 3/4 months. As was said above I think this is fairly unusual so I would expect in your husbands case he has the more positive outcome from this drug. Side effects aren’t too bad I found. Flushes the main issue.

Best wishes

User
Posted 17 Jan 2023 at 16:50
Mrs Mas, let the oncologist know asap. If abi fails within the first 12 weeks, you are allowed to swap to enzalutimide or apalutimide ... once the 12 weeks is up, those doors are closed to you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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 08:58

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 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 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 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 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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User
Posted 27 Nov 2022 at 13:40
I’m pretty sure our very own superman Irun has been on Abi for years and years. I think it’s not normally available in England but it is in Scotland. I would be interested in taking it instead of Enza when I get that far. Good luck with it all
User
Posted 27 Nov 2022 at 20:52

I was on arbiterone but it didn't last long, a matter of months before a tumour grew and gave me grief! I think it depends on the individual as people last a lot of years on it and as far as i see there seems to be more reports of sucess vs people like me. 

Hopefully you'll do well on it.

User
Posted 28 Nov 2022 at 16:30

Hi 

I started on Abiraterone in December 21. 
It worked really well. Brought my PSA down really quickly (64.2 to 0.3 in around 8 weeks). It’s been effectively zero  since April 22

The only real side effects are tiredness, weaker muscles etc but no major hardship. I basically take it when I get up in the night - 3/4 am. This means I don’t need to wait an hour for breakfast 😅

Overall Abiraterone has worked brilliantly for me…

User
Posted 04 Dec 2022 at 19:12

Thanks for your replies, gents.

Chris J, you are right if course, I-run is on a Abi.

 

Mrs MAS

User
Posted 13 Dec 2022 at 07:40

Ha! Don't know why I didn't think of taking the Abi on the middle of the night... currently nursing a cup of coffee as the minutes drag by before I can eat. 

I've been on Aberaterone since July this year,  together with Zolodex. PSA has gone from 77 down to 0.08. Only side effects are hot flushes (they were pretty much every hour during summer but seem to have slowed down in the cooler weather and reduced in severity) and loss of muscle/power. 

I'm lucky in that I had private health insurance so could get Abi in England.

User
Posted 13 Dec 2022 at 09:20
I’ve just had Onco review , and although my psa hasn’t turned yet after 2 yrs of Decapeptyl I’ve been told I will probably get Abi when I need it. I turned down early Enza at the beginning of Decapeptyl. Apparently Abi is better tolerated. Good luck
User
Posted 13 Dec 2022 at 10:08

Cheers Chris, maybe they are favouring Abi over enza now? I always got the feeling enza was prescribed more frequently till now. 

My husband has been on it for just over 2 weeks, he gets fatigued early evening and hot flushes but he did before. I hope its a success for as long as possible, and for you when you need it. 

Mrs MAS

User
Posted 13 Dec 2022 at 16:03
Thanks MAS. Abiraterone was only available in Scotland and I think it technically still is but is under review.

Keep on and good luck x

User
Posted 15 Dec 2022 at 20:59
Chris

You’re correct - still available in Scotland but my oncologist recently advised me that I wouldn’t now meet the criteria ie requires at least 3 bone mets or spread to lung/ liver.

I guess I was lucky to get when I did!

User
Posted 16 Dec 2022 at 03:23
Hi Mrs MAS I hope the Abiraterone works well for your husband. I read many stories of a quick drop in PSA. I am on it but it hasn’t done the job for me and has effectively failed after 3/4 months. As was said above I think this is fairly unusual so I would expect in your husbands case he has the more positive outcome from this drug. Side effects aren’t too bad I found. Flushes the main issue.

Best wishes

User
Posted 16 Dec 2022 at 08:49

Dear Michael, 

I'm sorry your treatments seem to have stopped doing anything for you so soon. Have they said what tne next step may be, chemo perhaps?

 

Mrs MAS

User
Posted 16 Dec 2022 at 10:46

Hi Mrs MAS…I had 2 scans this week, CT and Bone, I will find out the spread in January.  Oncologist was hoping/optimistic that Chemo would be an option.  As I said it’s unusual for this drug to stop so quickly it just looks like I have what they call castration  resistant PC.  Still options for me and I am sure your husband will do well on Abiraterone. 

Cheers

Michael

User
Posted 16 Dec 2022 at 10:48
Also Mrs MAS I should say, the Abiraterone is still doing something for me. If I wasn’t on it still the PSA would really be out of control. So I remain on it for now.

Cheers again

Michael

User
Posted 22 Dec 2022 at 19:27

Thanks all. Further update, bone scan on 30th November has shown a spread to bones, 2 spots in right pelvis and a rib on left side. I asked for the report which also mentioned left femur and lower right cervical spine. The report also used the word widespread. 

Treatment remains the same, worried this means prognosis worse. 

Edited by member 04 Jan 2023 at 09:11  | Reason: Additional info

Mrs MAS

User
Posted 13 Jan 2023 at 17:59

After almost 7 weeks on Abiraterone, my husbands PSA has risen again to 7.15. 

I honestly thought it would come down, so I'm stunned. 

 

Mrs MAS

User
Posted 14 Jan 2023 at 08:27

Is there a time for expected potential response, is 7 weeks quite early yet? Not sure how quick to expect a biochemical response. 

User
Posted 17 Jan 2023 at 16:50
Mrs Mas, let the oncologist know asap. If abi fails within the first 12 weeks, you are allowed to swap to enzalutimide or apalutimide ... once the 12 weeks is up, those doors are closed to you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Jan 2023 at 17:55

Hi Lyn

I had heard that rule but thought it was only if you had side effects that you could swap between them. I'm happy to be corrected on anything if I'm wrong. 

The CNS said to retest psa in 6 weeks and at next appt they will give a new strategy if it has risen again. The appt will be 13 weeks after he started it. 

I know Abi and enza work completely differently, the bicalutamide worked for 4 weeks only and I understand enzalutamide is in the same family which is why I think they chose abiraterone.

Would enza not just fail too? 

 

Edited by member 20 Jan 2023 at 08:56  | Reason: amend title and my spelling

Mrs MAS

User
Posted 21 Jan 2023 at 03:13

Hi Mrs Mas Just to update my oncologist has now stopped the Abi as it isn’t working any more. She was saying in some men there is an excellent response and in others like me and perhaps your husband (but i hope not) it just doesn’t work.  It is disappointing but for me they are going to give me up to 10 blasts of chemo if tolerated to try and halt the spread.  Horrible disease when it is hard to control.  I have my fingers crossed for your husband. 

Best wishes

Michael 

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 😬
User
Posted 08 May 2023 at 12:26

Thanks everyone. X

Mrs MAS

User
Posted 16 May 2023 at 13:18

Sorry to hear your sad news, hopefully when you see the oncologist they will have another portion to help

Keep strong, Dave

User
Posted 02 Feb 2024 at 20:15

I note there have not been any postings for a while on this but I've been on Abi for just over 3 months. Initially PSA dropped from 5.6 to 4.8 but test this week shows a rise to 8. Anyone else experience similar and is there still a chace it may drop. I take it with Prednisolone - would a change of steroid help?

User
Posted 02 Feb 2024 at 21:52

Hi, my husbands psa rose on Abi and the oncologist changed his steroid to dexamethasone. The different steroid works for many men. Good luck. 

Mrs MAS

User
Posted 03 Feb 2024 at 12:18
Hi Mrs MAS. Thanks for the reply. Has the change of steroid for your husband to Dexamethasone helped bring down his PSA and keep it lower. Best Wishes
User
Posted 03 Feb 2024 at 13:53

Hi Tom

 

For my husband it didn't lower his psa sadly but for many men it does and I hope that's the case for you.

 

Good luck x 

Mrs MAS

 
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