Rut Roh Rorge - PSA wrong direction

@dpayton - If there's actually something there, I hope so. I know it has been waking me up at night. I suppose it could just be the known met on L5 wreaking havoc though. Just have to wait for a scan to really know what's up. You know this disease, hurry up and wait.

@mjp0512

I'd think with the PSA at that level, SOMETHING would show up on the PSMA scan. I sure hope it does!! Keep us posted. Stay strong, brother...

4/17/26 Update...

Yea... finally got a date for PSMA PET scan...Apr 30.
What, me anxious? Nah... that's what the single malt is for. 💤

@mjp0512
Good luck! I hope it’s just something they can zap. Did your doctor(s) say anything about why you are castrate resistance so soon? Is it due to some mutation?

@johndavis60 - Hi John, Thanks! Just the opposite. Somatic testing identified a SPOP alteration which typically indicates..."increased clinical benefit from AR signaling inhibitors." That's why the decision was made to go with with Orgovyx and Nubeqa from the beginning immediately following diagnosis. The short timeframe to castrate resistance is a complete surprise. We (GUO & I) are hopeful that the ARSI (Nubeqa) is still doing its job as expected, however, the unexpected and rapid increase in PSA would dispute that. Blood was drawn for a Foundation One Liquid CDx test to identify any other pertinent genetic alterations; however, I haven't seen results yet. PSMA PET scan will let us know if things are running wild or reasonably controlled. I'm not expecting very good results. Last visit, doc looked up from reading test results and said, "Wow, you're very weird."

Think I'll go float a Cheerio in my morning single malt now. 🤣🤣🤣

@mjp0512
You did have quite a few aggressive issues along with the Gleason nine. Really disappointed to hear somebody has Become CRPC so quickly after having both ADT and Nubeqa. That really Blows up the theory that being on an ARP can really delay castrate resistance.

I think this may come down to something that Richard Wassersug PhD has said about being on the drugs and having prostate cancer. He contains that cosmic rays Are causing the castrate resistance, We are getting hit by them constantly. Your having so many aggressive issues would lead to a lot of cell growth which then could be hit by cosmic rays and become resistant.

I’ve been around six years since I became Crpc. It doesn’t mean things are almost over. Continuing treatment can make a major difference and new drugs are coming out all the time.

@jeffmarc - Heck Jeff, cosmic rays make as much sense as anything else at this point. Maybe the CDx will shed light on some strange mut causing the short timeline to CRPC. My concern now is how much the PET is going to light up.

@mjp0512
I am so sorry to hear all of this - I can only imagine frustration and worry 😞. My husband also has SPOP and I was so happy to see that (I mean talking about irony - being happy about having a mutation !!??? _ honestly we will all end up in a loony house ) .

How about estradiol patch ??? 🥺

@surftohealth88 - Thanks, surf. I'm not much of a worrier. The only thing that gets me is the waiting for the next test. Everything is on the discussion list including the estradiol patch, but docs did not want any changes made until CDx and PET results were back. Makes sense since at this point, they don't know what we're dealing with. Standard wisdom says PSA should be undetectable, not climbing and certainly not at the rate it is. Maybe I'll get the cover of one of those medical journals... "ADT/ARSI...Sometimes It Doesn't Work"😁

@jeffmarc We exist on this planet bathed in cosmic rays 24/7 and always have and always will.
If he is going to blame this factor in our environment for becoming castrate resistant, you might as well blame it for every cancer there is.
I’ve read the articles/comments you’ve posted by him and they are quite informative about the role of ADT and how it relates to CRPCa, but his cosmic ray theory is a bridge too far for me.
Cosmic rays can cause mutations in anything and everything, depending on their intensity so it almost seems superfluous to bring it up.
I mean, millions of men do NOT become CRPCa, yet they are bombarded by these same cosmic rays so I can’t see his reasoning at all on this.
I think it comes down to the individual, their particular cancer genetics, and their immune system…ie, some will - and some won’t. Just my take from what I’ve gleaned from the literature. Best,
Phil