Decision on Stampede Trial with Enzo

User

Posted 24 Apr 2017 at 19:01

Hello all

I'm now into my 3rd year on the Stampede J trial with Enzalutamide and have some decisions which I'm hoping someone here can help me with.

I started the Stampede Trial in January 2015 after diagnosis of PCa with a psa of 235 and was staged T3b N0M1 and Gleason 7.

Yesterday I had a restaging by the Stampede team after bone scan and CT scan.

Whilst the CT scan results were not yet available the bone scan showed that the metastasised cancer in my hip had gone into remission. My psa is still very low at .05 which it has been now for nearly 2 years.

So now I need to make decisions on options.

1) within the trial I will stop taking the Enzo for 2 weeks (in about 2 months) to see if my standard of life is improved. After this I could decide to stop the Enzo or to continue with its attendant side effects +.

2) I have the option of stopping the HT Prostap until my psa reaches 10 then restarting until the psa falls again.

I've got plenty of time to decide on these alternatives and of course once I get the results of my CT scans the situation might change again. These results should be due within the next few days. This of course should show what's happening in my prostate

I'd be very grateful of anyone's experience, thoughts or guidance on this as I'm back into no mans land.

Paul

User

Posted 25 Apr 2017 at 18:34

Paul,

I've just read through your full bio to see what side effects you've experienced. If I were you, I'd feel that the side effects were worth the protection Enzo was giving me and I'd not want to risk stopping it and thus never being able to use it again (unless I funded it privately). Remember, the next stop is chemo, it's not that bad but it is a hell of a lot less pleasant than Enzo was for me.

David

User

Posted 25 Apr 2017 at 19:06

Paul,

One of the downsides of docetaxel chemo is you have to take prednisolone and that elevates the bad cholesterol (LDL). It's done that to me. I've been to see my GP today to discuss this. We have a good relationship, we call spades, spades. His advice was not to go onto statins or any other medication because it's highly probable that PCa will take me out before the cholesterol manages to get me. We also agreed that docetaxel was extending my life without too much loss of quality. Therefore, it is a no brainer to continue with chemo, ignore the downsides, and get on with living. Like you, I'd love some normality, but the downsides of normality are not worth the risks for me and I'll continue to adjust to the 'new normal' that the various treatments bring provided they continue to provide a fairly decent quality of life. And when they don't, I'll wave bye bye to treatments and then I'll have a little normality before getting together with Old Nick.

David

Edited by member 25 Apr 2017 at 19:08 | Reason: Not specified

User

Posted 25 Apr 2017 at 19:59

We all experience HT differently so I think it is difficult to advise. I have been on prostap for five years and though I have the main side effects - fatigue, tiredness, no sexual functioning - I don't have hot flushes and some of the early effects, sore nipples, itching for now have receded. I was expecting to go on enzo a year ago and am awaiting scans to see current position. My world view is different I do not expect to survive though at 5 years+ Not doing bad. I don't feel brave enough to have HT holidays and have debated this with Si who has enjoyed his holidays. I like continuing what works and live with the reduced quality of life. It's such a personal decision. Hope you make the right choice for you.

User

Posted 26 Apr 2017 at 07:58

Hi Paul ,I wish your post was on earlier in the day as Gary had his 8 weekly app with the onco ,it would have been good to have had her thoughts ,as you know Gary is on the same trial but is still continuing with the max dose of both drugs .as far as we have been told and also the criteria on the stampede web site the trial will continue until either they begin to fail ,unable to tolerate the dosage or anything that may supersede the treatment .
Gary suffers with side effects mainly fatigue ,weight gain and loss of strength and on many occasions I have asked him the question of is all the side effects worth the continuing and every time it's yes ,if it's going to prolong going on to the next stage then it's well worth being able to see our children/ grandchildren grow up .
I'm sure you will choose your best option .keep us posted and I will ask at Gary's next app in 8 weeks
Best wishes
Debby

User

Posted 26 Apr 2017 at 16:00

Hi Debby

Thanks for your input.

I don't often post, only when I get a unsure of things.

Ref your Gary

He can reduce or even drop some of the drugs and still remain on the Trial.

Maybe next appointment yous might want to examine that.

Eg I as you know dropped Abiraterone. I was also offered a reduction from 4 to 2 Enzalutamide tabs. There seems to be a protocol for that.

There's no point in suffering too bad and the stampede team will help to improve std of life. The side effects don't go away with time.

Thanks again and best of luck

Paul

User

Posted 29 Apr 2017 at 14:07

Difficult decisions for you Healey but otherwise good news eh?

We can't control the winds - but we can adjust our sails

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User

Posted 25 Apr 2017 at 10:04

Hi Paul

I was under the impression that the trial only lasts 2 years....they will continue to monitor you (with blood tests etc...) if you wish but the Enzo (and Abi if one takes that) would stop after 24 months.

The Zolodax/Prostap can continue indefinitely if your Onco decides so (I was told to plan for 3 years)....

Nevertheless...one never knows if the PC is truly "gone" unless they stop the HT and wait to see what the PSA does...do they?

Since you had such good results with your PSA why not give a rest to your system and see what happens?

Keep us posted!

Regards

User

Posted 25 Apr 2017 at 16:40

Bill,

Thank you for your reply.

It's a bit confusing about the length of the Trial because my Onco keeps giving me different messages.

In previous appointments she's mentioned that I can continue on the Enzo for as long as it works.

I'm already over the 2 years ( at my next appointment it'll be 30 months)

I agree it would be nice to give my system a rest. The big but is if I do then I can not restart the Enzo.

I will pause taking the tabs for the 2 weeks but if after this I want to continue on the Enzo then my Onco says that I still can as it is within the Trial Protocol.

So I'm still not sure as yet which way to go.

It's a bit of an unknown whether without the Enzo that the HT Prostap will continue to control the PC.

My Onco did mention that once I finally stop taking the Enzo that I cannot start it again.

I'm tempted to give my system a rest but am scared to burn my boats.

Paul

Edited by member 25 Apr 2017 at 18:34 | Reason: Not specified

User

Posted 25 Apr 2017 at 18:34

Paul,

David

User

Posted 25 Apr 2017 at 18:40

David

Thanks for your comment.

It makes very good sense what you say.

I think part of me wants to get back my "Normality" where I can get back to running and stop having the sweats.

I also fear for what long term drug taking will do to my body.

Thanks so much for your comment.

Paul

User

Posted 25 Apr 2017 at 19:06

Paul,

David

Edited by member 25 Apr 2017 at 19:08 | Reason: Not specified

User

Posted 25 Apr 2017 at 19:59

User

Posted 26 Apr 2017 at 07:58

User

Posted 26 Apr 2017 at 16:00

Hi Debby

Thanks for your input.

I don't often post, only when I get a unsure of things.

Ref your Gary

He can reduce or even drop some of the drugs and still remain on the Trial.

Maybe next appointment yous might want to examine that.

Eg I as you know dropped Abiraterone. I was also offered a reduction from 4 to 2 Enzalutamide tabs. There seems to be a protocol for that.

There's no point in suffering too bad and the stampede team will help to improve std of life. The side effects don't go away with time.

Thanks again and best of luck

Paul

User

Posted 29 Apr 2017 at 13:41

I've now received my Oncologists Clinical Summary which includes as a PS my CT scan results.
My previously shown bone lesions have essentially resolved.
There are no significantly enlarged lymph nodes
No cancer spread to lungs or liver.
The prostate is no particularly enlarged

To me that sounds pretty positive

The Onco goes on to say
That i will get to the end of my 2 yrs on Enzalutamide and will then be offered continuance or can stop taking the Enzo.
Decision will be based on how much better I feel after 2 weeks off the Enzo.
Also stated was that I was a candidate for intermittent androgen blockage (Prostap?)

At least I've 3 months before I need to decide.
I hate these kinds of decisions because you never can tell what's the best.

Edited by member 29 Apr 2017 at 13:44 | Reason: Not specified

User

Posted 29 Apr 2017 at 14:07

Difficult decisions for you Healey but otherwise good news eh?

We can't control the winds - but we can adjust our sails

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