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Enzalutamide failed

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User
Posted 25 Jun 2021 at 12:04

Hi,

Not made many posts recently but bio is up to date.

Back in October last year I was started on Enzalutamide as PSA had been going up for a while.  After a trial period it was decided I would stay on it and my consultant thought that I would do well on it.  This was not the case; after an expected initial rise in PSA it never came back down again and the treatment was abandoned six weeks ago.  A recent bone scan has shown bone mets in another half dozen locations on top of the original two.

The plan now is ten cycles of Cabazitaxel (already had two), followed by a course of Radium 223 as long as there are no soft tissue mets.  And then that’s it!  I have a 50% chance of still being alive at the end of next year with that being the exception not the norm.  My wife and family are being incredible as always but I keep getting overwhelmed by a deep sadness over all the things I still want to do, see and be involved in.  Don’t get me wrong - it’s not all doom and gloom, I’m not unwell at the moment and am still enjoying life but the sadness keeps getting in the way.

Thanks for reading this

Dave

User
Posted 25 Jun 2021 at 12:04

Hi,

Not made many posts recently but bio is up to date.

Back in October last year I was started on Enzalutamide as PSA had been going up for a while.  After a trial period it was decided I would stay on it and my consultant thought that I would do well on it.  This was not the case; after an expected initial rise in PSA it never came back down again and the treatment was abandoned six weeks ago.  A recent bone scan has shown bone mets in another half dozen locations on top of the original two.

The plan now is ten cycles of Cabazitaxel (already had two), followed by a course of Radium 223 as long as there are no soft tissue mets.  And then that’s it!  I have a 50% chance of still being alive at the end of next year with that being the exception not the norm.  My wife and family are being incredible as always but I keep getting overwhelmed by a deep sadness over all the things I still want to do, see and be involved in.  Don’t get me wrong - it’s not all doom and gloom, I’m not unwell at the moment and am still enjoying life but the sadness keeps getting in the way.

Thanks for reading this

Dave

User
Posted 27 Jun 2021 at 07:17

Hi,

All of my husbands treatments had failed and in March he was put on Diethylstilbestrol, it is a once a day tablet and costs about a penny a day, his first PSA  test after taking it for almost 3 months had gone down from 27 to 7, his oncologist was over the moon and is not sure how it has worked, his next blood test is at the end of July and we will then see if it is still working but fingers crossed, worth asking your oncologist about this. Tony has not had any side affects from these tablets, he is also still on HT.

 

regard Barbara x

User
Posted 27 Jun 2021 at 09:40
Sorry to see this latest news Davy. On the up side, cabazitaxel has worked really well for some men on this forum, particularly when they had also had a good response to docetaxel previously and, as Barbara says, although Stilboestrol is one of the oldest forms of treatment for prostate cancer it is worth a try because it works in a different way to the other hormone treatments. Devonmaid's husband was on Stilboestrol for 10 years!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jun 2021 at 16:24

Hi Dave,

I'm sorry to read this.  I'm afraid I've no great advice.  Although there are some new treatments and trials in the research section of the Prostate Cancer UK website and people do write on here of things going better than they thought.

I don't know how able you are but perhaps planning some things you can do will help and to seek some advice.   I must admit I've become more religious since I got the illness, although I am still psa undetectable.   I had noticed I was more interested in religious matters and expanding my musical tastes as I got older anyway.

I did say I hadn't much to offer but maybe there are some thoughts. 

Best regards,
Peter 

User
Posted 25 Jun 2021 at 17:50

Hi Dave, sorry to read Enzalutamide has failed. I hope you stay well for a long period of time and get to do things you enjoy. The sadness part I can totally understand.

 

Ido4

User
Posted 25 Jun 2021 at 18:09
Dave I’m gutted to read this for you , and also because I feel I’m following your footsteps. I get the overwhelming sadness. It hits in waves and just when I’m beginning to really enjoy something it washes over me that it won’t last. Take care and very best wishes
User
Posted 30 Jun 2021 at 06:23
Hi Dave,

Tony has dialysis 3 times a week, he leaves at about qtr to 8 in the morning (he gets transport) and gets back between 12 15 and 1.00pm .they are not really sure what caused the CKD , at first they said was nothing to do with the PC but I have seen it can cause Kidney problems but so does high blood pressure and he has that.

all the best

Barbara

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User
Posted 25 Jun 2021 at 16:24

Hi Dave,

I'm sorry to read this.  I'm afraid I've no great advice.  Although there are some new treatments and trials in the research section of the Prostate Cancer UK website and people do write on here of things going better than they thought.

I don't know how able you are but perhaps planning some things you can do will help and to seek some advice.   I must admit I've become more religious since I got the illness, although I am still psa undetectable.   I had noticed I was more interested in religious matters and expanding my musical tastes as I got older anyway.

I did say I hadn't much to offer but maybe there are some thoughts. 

Best regards,
Peter 

User
Posted 25 Jun 2021 at 17:50

Hi Dave, sorry to read Enzalutamide has failed. I hope you stay well for a long period of time and get to do things you enjoy. The sadness part I can totally understand.

 

Ido4

User
Posted 25 Jun 2021 at 18:09
Dave I’m gutted to read this for you , and also because I feel I’m following your footsteps. I get the overwhelming sadness. It hits in waves and just when I’m beginning to really enjoy something it washes over me that it won’t last. Take care and very best wishes
User
Posted 27 Jun 2021 at 07:17

Hi,

All of my husbands treatments had failed and in March he was put on Diethylstilbestrol, it is a once a day tablet and costs about a penny a day, his first PSA  test after taking it for almost 3 months had gone down from 27 to 7, his oncologist was over the moon and is not sure how it has worked, his next blood test is at the end of July and we will then see if it is still working but fingers crossed, worth asking your oncologist about this. Tony has not had any side affects from these tablets, he is also still on HT.

 

regard Barbara x

User
Posted 27 Jun 2021 at 09:40
Sorry to see this latest news Davy. On the up side, cabazitaxel has worked really well for some men on this forum, particularly when they had also had a good response to docetaxel previously and, as Barbara says, although Stilboestrol is one of the oldest forms of treatment for prostate cancer it is worth a try because it works in a different way to the other hormone treatments. Devonmaid's husband was on Stilboestrol for 10 years!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jun 2021 at 19:04

I was hoping there'd be a ray of light on this thread and Lyn brought it, and then built more light from Barbara's comment. 

The drug mentioned by Barbara was found in 1938 although I read it's not used much now, but an interesting option perhaps. 

User
Posted 28 Jun 2021 at 18:49
I had a quick read up on it as well - including it being used on dogs!!

It is still listed as a treatment for prostate cancer on the MacMillan support pages so I’m going to investigate further.

Dave

User
Posted 29 Jun 2021 at 07:45

Hi Dave

 

cannot do any harm to mention it and see what you Oncologist has to say. Tony started on dialysis on the 1st pf June as he has end stage kidney disease, I am just hoping this does not affect his results.

 

regards Barbara x

User
Posted 29 Jun 2021 at 17:07
Hi Barbara,

Sorry to hear about Tony’s kidney problems. Does he need dialysis often? Is this a separate issue or caused by the prostate cancer?

Dave

User
Posted 30 Jun 2021 at 06:23
Hi Dave,

Tony has dialysis 3 times a week, he leaves at about qtr to 8 in the morning (he gets transport) and gets back between 12 15 and 1.00pm .they are not really sure what caused the CKD , at first they said was nothing to do with the PC but I have seen it can cause Kidney problems but so does high blood pressure and he has that.

all the best

Barbara

User
Posted 02 Apr 2022 at 16:35

I feel for you Dave. I was diagnosed very late last August. The thing had spread “everywhere” and my PSA was 500. I was offered Zoladex plus Enzalutimide. Seems to have got it under control but don’t know how long for. 
liiving with the uncertainties now and the sadness that goes with it. I’ve got 2 grown up kids but no grandchildren yet or even on the horizon. I don’t expect to ever meet them if there are any. 
On the plus side so many friends have come out of the woodwork. 
Good luck and I hope you get to make the best out of whatever time you have left. 
phil

 
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