Hi from Denmark - Im 67 - PC since 2021 - High risk low volume

Posted by spinaltap @spinaltap, 14 hours ago

Diagnosed in 21 with psa 540 and Gleason 8 - been on ADT Eligard and NUBEQA since - the ADT is a tough friend to know but im lookin forward with positive energi - tryin to do the exercise, weightlift and walk/runnin as much as possible - it aint easy if one wants to do everything like it used to be - but wanna be grateful for still bein around - all the best from me

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mjp0512 | @mjp0512 | 13 hours ago

Welcome! Great screen name if you're talking about the band. If you're talking about the procedure...ouch.

spinaltap | @spinaltap | 13 hours ago

Defintely the band .. and great movies 🙂

xahnegrey40 | @xahnegrey40 | 11 hours ago

so why are still on ADT- what was your Gleason 8 ? did you have bone mets? 5 yrs seems a bit long ...

spinaltap | @spinaltap | 8 hours ago

In reply to @xahnegrey40 "so why are still on ADT- what was your Gleason 8 ? did you have bone..." + (show)

@xahnegrey40 No, I did’nt have any bone mets - only 2 Small lymp nodes where found - i’ve been told by my oncologist that im gonna be on ADT for the rest of my life - to risky to pause it, they say - Gleason was 4-4 as I understand it

denis76 | @denis76 | 8 hours ago

In reply to @spinaltap "@xahnegrey40 No, I did’nt have any bone mets - only 2 Small lymp nodes where found..." + (show)

@spinaltap

My doctor also told me to continue ADT until the end, but I think it's necessary to take risks to avoid resistance. What do you think?

copyman | @copyman | 7 hours ago

Did you do any other type of treatment besides the 2 drugs?

Jeff Marchi | @jeffmarc | 7 hours ago

In reply to @denis76 "@spinaltap My doctor also told me to continue ADT until the end, but I think it's..." + (show)

@denis76
Clinical trial seemed to show that getting an ARPI can prevent castrate resistance from being on ADT alone. If you are cspc Then getting on Erleada or Zytiga Can delay it. A lot of doctors won’t prescribe Nubeqa If you are, CSPC Unless you have a metastasis.

Jeff Marchi | @jeffmarc | 7 hours ago

I have been on ADT for eight years and it really hasn’t been a major problem. I do walk on the track, quite fast, for a mile twice every day. I also go to the gym three times a week. I do get infusions to keep my bones strong. I take calcium and vitamin D every day for the same reason. All those things counteract the many side effects i get from ADT. I guess the one thing that is annoying is the lack of interest in sex, Something I used to do regularly.

I’ve had PC for 16 years, I’ve had a prostatectomy and salvage radiation and 4 reoccurrences. I have BRCA2, which makes it more aggressive, But I’m still here and have been undetectable for 29 months.

Don’t give up Hope.