Which way to go now?

[Dondodoc]

After two plus years on abiraterone + pred and prostap had to stop due to rapid heartbeats attributed to abi. Month later started Xtandi stopped in less than one month due to zombie like side effects. That was five months ago. Still on three monthly prostap but psa still at <0.10 with testosterone 0.09.

Is it wise to stay with just prostap (lute) and keep monthly blood tests to follow psa/testosterone or as consultant onc start lower Xtandi dose now.

I prefer the “ holiday “ obviously.

Any ideas wise ones.

[Dondodoc]

Ps. All bloods normal range

[Kaliber in reply to Dondodoc]

Welcome to my world of Xtandi brother. My cardiac qrs train looks like a pong game, my blood glucose is sideways and I’m semi wheelchair disabled by Lupron Xtandi. And that’s just bits of it. Yea I’m in the small minority of users that gets unmercifully hammered by it ....but I’m good with it and actually very happy to be here because of it. My wife loves to say it’s WAY better than the alternative. Yayahahahaya yayahahahaya Sounds like you are borderline hammered yourself and I understand not wanting to feel that way ...I totally get it. Still if it adds many months , probably years to extend your life ... I’m all for it. I’m just not ready or willing to check out yet. I’m just pulling up my big boy pants and carrying on finding ways to use this extra time alive to enjoy life and time with my wife. We’ll both be fully vaccinated in three weeks and I’m already planning a trip to an Oceanside resort ( no bar, no restaurant, no spa deck , all closed, but I don’t care ). A lot of that will take my mind off other things for sure. I surely want to experience the ocean at my doorstep again.

My first offer of care was hospice and with Lupron Xtandi I’ve escaped that for 26 months now ... feels like I’ve got a few more coming too. Yea I’m getting hammered by the treatment but I’m looking past all that and hanging in there.

Just my experiences and thoughts about this ...your mileage may vary brother.

Just say’in 🌸🌼🌻🦋🌈❤️❤️❤️

[j-o-h-n in reply to Kaliber]

You know..... I'm pulling for you..........and the hammer too..........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/17/2021 11:05 PM DST

[Kaliber in reply to j-o-h-n]

Love ya buddy .... ain’t nudd’in todit. Preciate your saying so.... humans have amazing abilities at adaptation .... I’m the perfect example . Yayahahaha yayahahaha

[Tall_Allen]

Maybe your insurance will approve Nubeqa off label, given your history.

[Dondodoc in reply to Tall_Allen]

Thanks T A I’ll check that out

[Dondodoc in reply to Tall_Allen]

I assume that’s available in uk

[Tall_Allen in reply to Dondodoc]

According to this, NICE approved it for non-metastatic CRPC:

pharmatimes.com/news/bayers...

IDK if they are willing to provide it off-label, but I think your history makes a good case for it.

[Dondodoc in reply to Tall_Allen]

Thanks Allen, you are a mine of information

[Shooter1]

!/2 dose Xtandi worked for three years for me. Now PSA rising and speeding up doubling time. Full dose was intenable (fully an invalid).

[Dondodoc in reply to Shooter1]

Thanks Shooter full dose blew me away

[Nous]

hi Dondodoc ... consider taking a look at envita,com ... best wishes ...Nous