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Arbiraterone and / or Chemo

User
Posted 23 Oct 2016 at 15:37
I have read a lot about abiraterone (zytiga) in the last few days. Does anyone know if this is now widely available to men (if the Drs believe it might be helpful) and if so does it tend to be given before or after chemo. I have also read about the trial which concluded that early chemo could be better so confused now re the order things are done in.

(My husband has been diagnosed with an initial PSA of other 6000. I am very scared that they will say nothing they can do but at same time trying to be hopeful that something will be able to control it)

Thank you.
User
Posted 23 Oct 2016 at 20:12

Hi , my understanding is early chemo is given within 3 months of diagnosis if the cancer has escaped the capsule I'd advanced. I also understand that now it should be widely available and is successful for 80% of men and should extend life by average 2 years for the 80%.
Abiriterone is given once the cancer becomes resistant to just zoladex and biclutamide alone ie it's the 2nd line of defence.
At this stage from what I have read of your hubbys situation, I would expect early chemo, zoladex and biclutamide at this time and see how they reduce PSA and cancer size.
Hope that helps

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 23 Oct 2016 at 20:21
That is really helpful - thank you.
If someone has chemo and that then fails - can they then move on to arbitarerone - or is that option then closed to them ?

(He has already been started on the zoladex and biculatamide. The biculatamide is only for 28 days though.)

Edited by member 23 Oct 2016 at 20:25  | Reason: Not specified

User
Posted 23 Oct 2016 at 21:34

Hi , the chemo and abiriterone do different things so I don't think use of one excludes the other.
Chemo kills the cancer (and anything else fast growing). If it does not work it's usually because the man can not cope with the "poison" I've has a reaction or it damages too much else along the way, that is rare but does happen, 80% of men do well on early chemo.
The abiriterone I believe stops the cancer cells increasing in size by blocking the "food" source for a while.
So the chemo shrinks the cancer( my tumors went from 3.5cm to 0.5 cm on chemo, zoladex and biclutamide). Then in my case the cancer got clever and started using biclutamide as food so they stopped that, then as the PSA kept rising they started me on abiriterone. So for now I would imagine they don't reach for the abiriterone for your hubby as they will want to see if the PSA falls with zoladex and biclutamide first, then I would guess chemo soon and then wait. From what I understand you want to save the abiriterone until as late as possible if the other stuff can bash the cancer without it. Abiriterone does not work for everyone, you will know shortly after it starts if it does, my onco said average success is 18 months, some not at all some 4 years. Every mans cancer is different so like you when we look for answers we could be at the top or bottom of the spectrum or where the majority sit, in the middle!
As ever caveat that the above is what I have gleaned or been told by my onco , I am no doc.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 23 Oct 2016 at 22:04
Thank you so much - it's very kind if you to share the info you have picked up
User
Posted 23 Oct 2016 at 22:48

There is a similar drug to arberiterone called enzalutimite which is likely to be my next drug. I will have it prior to chemo as the protocol when I was diagnosed was not to have early chemo that is a recently changed protocol following research. I also had bicultimide for the first 28 days to avoid tumour flare but then three years on I had it as a treatment and it was effective for about a year. I am nearly five years on with bone met spread.

So practices do vary according to what they find. Keep us in touch anyway.

User
Posted 23 Oct 2016 at 22:52
That's really interesting to know that bicultimide can be reintroduced again at a later stage. I hadn't realised that.
User
Posted 25 Oct 2016 at 23:34
Hi Sally,
Trevor has been on Abbiraterone since last Sept 2015 and although it hasn't been a massive success i.e. Not reduced his PSA in fact we are know at 24000 I personally think it has slowed things down , everyone is different in how they respond to treatments. Trevor is on Zometa, as well
Si Ness if you look up his profile has had early chemo and Abbiraterone he had a low PSA but with multiple spread he was diagnosed at a similar time to Trevor and is doing very well .
He swears by a Fosters diet and who I am I to argue.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 Oct 2016 at 23:43
Dear Julie thank you for replying to my questions.
I wanted to thank you for all your posts about Trevor too. I keep coming across them over and over again as I search for things because of his original high PSA (like my husband) and I have found them so helpful x
User
Posted 26 Oct 2016 at 14:38

sallyyy,


Regarding your hubby's high PSA. I started with a relatively low PSA, see my profile. I recall asking my Onco "what's better, a PSA of 6 or 600". Her answer was "it's irrelevant, it's the doubling time that matters". I persisted "so a PSA of 6 that doubles to 12 in 3 months is no better or worse than a PSA of 600 that doubles to 1200 in 3 months". Her answer was "yes".


You need to check this out with your Onco but if he/she says the same then maybe you don't need to be too stressed out by the high starting PSA. Fingers crossed for you.


David

User
Posted 26 Oct 2016 at 15:10
Thank you David that is really useful info.
A further blood test a week after the original one showed that PSA had risen by 700 in a week (from 6000) which would give a doubling time of approx 9 weeks. This is obviously not good on top of the very high PSA but my husband started hormones immediately and we are just hoping that this will have a positive impact.
User
Posted 08 Nov 2016 at 18:29
As I mentioned above my husband is taking biculatamide for 28 days (finishes on Friday) to stop tumour flair from the HT injection.

I have been reading that some people keep taking the biculatamide alongside the injection. Is that common ?

My husband might be starting docetaxel chemo next week drowning in his low white blood cell count. (It is low for hereditary reasons. Never caused any problems but may be issue for chemo. It is 3.6 - normal range is 4-11.)
User
Posted 08 Nov 2016 at 23:40
Hi Sally,
Trevor had the Bicalutamide for nearly two years so yes it can be normal practise to take this for quite some time it reduced his PSA from the starting point of 13000 all the way down to 15 one point so yes it can be very effective.
He has been on Abbiraterone since Sept 15 so over a year and although his PSA has continued to rise it has risen slowly and he is just about to start on Raduim 223 .

His PSA at the moment is know 2000 plus but as they say everything is relative.

He is one of the first to go on Raduim and stay on Abbiraterone at the same time so a combination of the two.

Chemo is probably not on the cards for us in fact we were told in the beginning that it wouldn't be . Trevor has had 3 previous Heart attacks so it wouldn't be a wise option but for many in early diagnosis it is giving great results.
Hang on in there it might not seem like it but you are riding the Sunami and you will ride that wave.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Nov 2016 at 23:57
Thank you Julie x
 
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