stopped Orgovyx and Zytiga with prednisone after 9 months (post radiation ) due to concerns about heart and QOL . What’s next ?

[PBnative]

I had 26 radiation sessions for my stage T3b PCa with “ probable lymph nodes , “ following a clean PSMA - PET scan . Initial Rx was for ADT for 18-36 months and Zytiga for two years . When I told my MO at MSK that I wanted to stop he said he “didn’t recommend “ stopping but studies show that my original plan vs intermittent ADT appear to be a “ wash.”

Questions :

Is it possible that radiation and hormone therapy have done a job on my cancer ?

How often should I check PSA ?

What change in PSA would be a sign of trouble ?

why is 2 years of hormone therapy better than 9 months ?

Why does the addition of Zytiga to ADT slow progression to CRPC ?

Thanks to all for your incredibly helpful sharing of experience and information.

[Tall_Allen]

What you are doing is not intermittent ADT. You are stopping adjuvant ADT that was supposed to be part of your curative therapy. Stopping early selects for the most hormone-resistant cancer, just as stopping an antibiotic early selects for the most resistant bacteria.

2 years is what is needed to kill the metastatic cancer cells in your lymph nodes.

Zytiga helps kill the most hormone-resistant cancer cells.

[London441]

I presume you want to stop the ADT because of the side effects. This move, to gain QOL and help your heart, amounts to taking a risk of unknown proportion.

Increasing your strength and fitness will do the same thing-plus slow disease progression- and a induce a number of other positive changes without having to stop the drugs to feel better.

[TJGuy]

I retired at RP failure and bleak prognosis. I had T3bn0m0 followed by RP, which failed in 2017. Later in 2019 had PBLN radiation and ADT Lupron for two years. Failed.

Currently letting PSA rise to scan again to see when PC is detected to possible attack it again.

In the year since I stopped ADT PSA risen <0.01 to 0.396 I have continued exercising my butt off. I've lost 17 pounds of ADT weight, lost fat added muscle, have a athletic looking body again and feel free of ADT side effects.

I'm feeling joy in what "feels" like "normal" life again and some hope for the next go at it.

Used the past 5 years to travel all 48 states in a RV. Was told I wouldn't live to retirement age so move retirement forward. So far doing better than ever imagined.

[keepinon in reply to TJGuy]

Good for you!!

[Hidden]

PB, best advice from one who started with PCa in 2003 and metastatic in 2004; kill the bastards and side effects be damned. Listen to your MO and the words written by Allen are true.

Gourd Fancer