4 Weeks on Orgovyx and PSA Undectable

Posted by trees55 @trees55, May 30 8:34am

My RARP was in early December 2024. Clean margins and prior PMSA/PET was negative , but I did have signs of PNI and EPE. First PSA was 0.192 , followed by 0.154 and then 0.345. Followed up with PMSA/PET scan which came back negative.

Team recommended 6 months of hormone therapy along with 35 radiation treatments over 7 weeks given PSA was rising and still detectable. I chose Orgovyx which I started almost 4 weeks ago. Other than hot flashes, I’ve not had any significant side effects (well other than my wallet being lighter!).

Radiation is not scheduled to start until end of July. I have a consult next week with the doctor who leads my team and is head of the department, to get his thoughts on my treatment plan. In advance of the call he asked me to get another PSA test. Just got the results back - < 0.015 which is lowest detectable limit for the essay they use. < 0.015 is considered undetectable.

Anyone else have this experience or have thoughts?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Orgovyx Has hidden your active cancer behind a drug that stops it from growing and may shrink it. The thing is after RARP if your PSA is above .2 they want to do salvage radiation.

They radiate the prostate bed because that is the most likely Place for the cancer to spread at first. Since your PSMA Pet scan showed nothing The prostate bed is the most likely location for metastasis.

Some doctors feel you should just wait until metastasis show up and then blast them with SBRT. Salvage radiation does work quite well for Many people, They gave me an additional 2 1/2 years of undetectable prostate cancer.

One thing to realize is that the PSMA PET scan cannot see metastasis that are 2.7mm Or smaller, And in some cases they cannot detect them up to 5 mm. So you could have metastasis anywhere, but they are not big enough to be seen yet.

I’m just giving you a lot of different things to think about. Don’t be fooled by the fact that orgovyx is why your PSA is down. You have an active metastasis that needs to be treated. If you don’t do that when you stop Orgovyx Your PSA will rise quickly.

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@jeffmarc

Orgovyx Has hidden your active cancer behind a drug that stops it from growing and may shrink it. The thing is after RARP if your PSA is above .2 they want to do salvage radiation.

They radiate the prostate bed because that is the most likely Place for the cancer to spread at first. Since your PSMA Pet scan showed nothing The prostate bed is the most likely location for metastasis.

Some doctors feel you should just wait until metastasis show up and then blast them with SBRT. Salvage radiation does work quite well for Many people, They gave me an additional 2 1/2 years of undetectable prostate cancer.

One thing to realize is that the PSMA PET scan cannot see metastasis that are 2.7mm Or smaller, And in some cases they cannot detect them up to 5 mm. So you could have metastasis anywhere, but they are not big enough to be seen yet.

I’m just giving you a lot of different things to think about. Don’t be fooled by the fact that orgovyx is why your PSA is down. You have an active metastasis that needs to be treated. If you don’t do that when you stop Orgovyx Your PSA will rise quickly.

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Thanks for the thoughtful and balanced reply. Everything you mention makes complete sense and is consistent with what I’ve heard otherwise. I’m assumiming my team will recommend continuing with radiation treatments and the 6 months of hormone therapy.

Not excited about either, but in the bigger scheme of things, it’s a pretty small inconvenience. I recovered from the surgery quickly (was walking 6 miles within a week and no incontinence) and, other than hot flashes, I’ve had no significant side effects from the ADT. Pretty much am doing everything I was before other than sexual function is mostly on hiatus between the RALP (full nerve sparing) and ADT. Then again I turn 70 this year so probably should temper my expectations!

I will see what the team says next week, but I’m prepared to stay the course. Thanks again for your thoughts.

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I'll confirm that ADT took my PSA down to undetectable (< 0.01) long before I had SBRT to my prostate. It's good news that your cancer is castrate-sensitive.

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My experience similar to yours - like a wonder drug for rising PSA. Your SE’s may slowly increase so be aware that you must push thru fatigue and hit your exercise with walking/weights.
My team went thru this in a very breezy way so it almost sounded like boilerplate disclaimer on a TV drug ad. This Mayo Forum really, REALLY came to the rescue and got my butt moving with excellent advice on how NOT to become a fat couch potato with boobs.
Not to say I didn’t nap in the PM but only after an hour or so of strenuous (gotta be!) walking and moderate weight lifting. Not Olympic caliber, just what you can comfortably handle to keep your muscle tone.
Phil

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Very similar course. Executive summary: Salvage Radiation Treatment with 4 mos Orgovyx has resulted in 2 yrs of < .02 undetectable PSA post treatment. Clearly very pleased and hoping/praying for continued good results.

Following RP; persistent PSA .19 (repeated 30 days .18) and EPE identified post-op pathology.

Immediately initiated treatment of 4 mos ADT Orgovyx w/ 37 radiation treatments 66.6 gy.

WPRT Radiation: Delivered to entire prostate/pelvic bed/region together with pelvic lymph nodes.

Orgovyx dropped PSA to undetectable rapidly.

Not an easy journey (ADT sucks), but well worth it. Stay active; I walked almost daily and lifted light weights upper body.

Best wishes.

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There are various data in literature that discuss those with a PSA response to undetectable in the first six months of treatment may have more durable progression free survival after completing treatment. I may be one of those see attached clinical history).

From what you describe, the WPLN and six months ADT, in line with data from clinical trials about combination therapy - MDT and systemic therapy. You can find some literature that points to 18, 24 moths, but given your response, six may be a good choice,

ADT sucks, no doubt about it, mitigating strategies in my experience:

Diet
Exercise
Managing stress,

Orgovyx can be expensive depending on one's insurance. I have TFL so it was $18 a month.

It's advantages over say Lupron are generally understood:

Faster to castration
No flare
Lower CV SE profile
Faster recovery of T when coming off it.
Side effects - still, no T is exactly that. I did 12 months of Orgovyx, fatigue, muscle and joint stiffness, hot flashes, genitalia shrinkage, yep, were they as severe as my 18 months of Lupron, hmmm, maybe not but they still sucked,

Kevin

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