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Trial experience?

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User
Posted 07 Dec 2020 at 16:17

Hello Everyone, 

My Dad has been recently diagnosed with advanced prostate cancer. He's been given the opportunity to participate in the Atlanta trial and I'd appreciate your views and experience of this. He's mid 70s, very fit, no other health issues, on hormone treatment with enzalutamide about to start. We're all keen for him to make the most of the treatment options,  with quality of life being the most important thing to him.

Thanks very much,

Dubyahdubyah 

User
Posted 07 Dec 2020 at 19:02

Hi,

Doing ok and smooth ride so far on Enzi but  early days.As  I understand the posting your dad will not get to choose which arm of the trial he goes on- hence Lyn's comments.  The surgery element of this may be something some of us may want to ovoid .

Regards

Norm

User
Posted 08 Dec 2020 at 08:11
Hi my husband has been on the stampede trial for 4.5 years on arm J . Luckily he was given the medication rather than just monitoring.

Yes there are side effects as in fatigue,weight gain and loss of libido,but we feel it is worth the risk .

His PSA has been undetectable for all that time ,starting at 23 with lymph node involvement and 4+5 grading .

At all times he was assured he could come off of trial but he would still be monitored for research purposes,we have others members (Healy) that started on full trial but after a few weeks he changed the dose to just Enzo but is still going strong on the trial .

Best wishes with what ever is decided .

Debby

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User
Posted 07 Dec 2020 at 16:57
One of the great things about being on a trial is that the man gets much closer monitoring than he would just under the care of a urologist or oncologist. The downside is that he will have to live with the side effects of the radical treatment allocated to him; this is tough for some men even with the chance of a cure so to live with side effects knowing that there is no cure might be quite difficult emotionally. I guess it depends how resilient he is?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Dec 2020 at 17:09

Lyn,ref your helpful advice above .Even if there is no prospect of a cure the chance of extra good quality time may make it worthwhile to join a trial ?

Norm

User
Posted 07 Dec 2020 at 18:10

Hi Lyn,

Thanks very much for your response.  I've seen you've been very helpful to folk on here.

The question of the side effects is the biggie, and a question Dad will ask of the consultant re the options available through the trial. It looks as though there may be the option of radiotherapy on the mets which are currently identified as low volume and in one area only (that they can see currently). Dad is physically resilient,  but all of this is new and bit daunting, so any guidance questions to ask would be great.

Thank you 

Edited by member 07 Dec 2020 at 18:17  | Reason: Not specified

User
Posted 07 Dec 2020 at 18:12

Hi Norm,

Thanks for taking time to respond.  Cure highly unlikely I think, but good quality extra time is what we're hoping for.

Have you started on enza, and if so how are you doing? 

Dubyahdubyah 

User
Posted 07 Dec 2020 at 18:22
Absolutely - but it is easy to understand why some men might be reluctant to take part, I think, and important that family members / loved ones understand why it might not be an easy decision? Having said that, I don't believe they are having any trouble recruiting.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Dec 2020 at 19:02

Hi,

Doing ok and smooth ride so far on Enzi but  early days.As  I understand the posting your dad will not get to choose which arm of the trial he goes on- hence Lyn's comments.  The surgery element of this may be something some of us may want to ovoid .

Regards

Norm

User
Posted 08 Dec 2020 at 08:11
Hi my husband has been on the stampede trial for 4.5 years on arm J . Luckily he was given the medication rather than just monitoring.

Yes there are side effects as in fatigue,weight gain and loss of libido,but we feel it is worth the risk .

His PSA has been undetectable for all that time ,starting at 23 with lymph node involvement and 4+5 grading .

At all times he was assured he could come off of trial but he would still be monitored for research purposes,we have others members (Healy) that started on full trial but after a few weeks he changed the dose to just Enzo but is still going strong on the trial .

Best wishes with what ever is decided .

Debby

User
Posted 11 Dec 2020 at 22:00

I'm glad to hear it's going well for you, Norman. Thanks for the message you sent also, I couldn't respond privately as I'm a newbie.

Best wishes to you 

 
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