ADT, maybe not? Anyone opted out of ADT?

I knew someone who felt the side effects of Lupron was not worth it and decided to go without, after all he like me heard that "no one dies from PC. He is dead now." I am still going on with treatments although they no longer seem to be working.

@duberdicus
There are many treatments. When Lupron failed me, I went on Biclutamide 1.25 years later I went on Zytiga. 2 1/2 years later, I started having Afib Problems with Zytiga so I switched to Nubeqa, It’s worked great for 2 1/2 years.

Someone who has had multiple drug treatments can get chemo or Pluvicto, In some cases both.

Have you followed multiple different treatments after Lupron?

On year 13 with this disease. Have been under treatment for 11 years. I have had Radiation, Firmagon, Lupron depot of various strengths, Orgovix, Eligard, Zytiga, prednisone, Dexamethasone, denosumab. For several years PSA was controlled and became negligible after each injection. The last couple years it has increased to over 19 regardless of treatments. The last 2months, after adding Dexamethasone to Zytiga and Eligard PSA decreased to 6.25. This has been disappointing and expecting an addition to my treatments.

@duberdicus
Have you had a PSMA Pet scan to see if there are noticeable metastasis. If so, they can be zapped with SBRT radiation. I’ve had it done to mine had one in the spine I had zapped.

I was diagnosed 16 years ago and had surgery a few months after and 3 1/2 years later salvage radiation.. When Lupron stopped working I went on Biclutamide and then Zytiga and now Orgovyx with Nubeqa, which has kept me undetectable for the last 24 months. I have a genetic problem BRCA2 Which prevents my system from correcting DNA error so I’ve had four reoccurrences.

Dexamethasone is supposed to work a lot better with Zytiga, but it has its limits and you seem to be beyond them. I was on Zytiga for 2 1/2 years and my PSA was only undetectable one month in that time. Switching to Nubeqa Has been a real eye-opener since I’ve gone so long undetectable. Not only that, but its side effects are very few, if any, I haven’t noticed anything. It can also reduce your brain fog because it Doesn’t pass the blood brain barrier like Zytiga.

Speak to your doctor about switching drugs, It may make a big difference for you and it’s worth trying at least. Zytiga has just really miserable side effects, It’s worth getting off of.

@capatov
I did not have hormone treatments. My original treatment plan included it but Decipher came back low riks and the hormone treatment plan was removed.

My Mayo R/O said the hormone treatments provide an additiona level of success between 10-20%. This is him talking not me. If my original treatment plan had to be follow I would NOT like to be on hormone treatment plan but for me the 10-20% help would purseade me to.

The hormone treatment per my Mayo R/O does not injure the cancer cells (they goal of radiation) nor removes it. It starves the cancer so the growth is curtailed and what every treatment you get is enhanced as the growth of your cancer has been curtailed.

I was finally diagnosed with low risk PC and had 30 rounds of proton radiation.

@jeffmarc
PSMA reviled issues in my spine, spinal column, ribs, pelvic bones, pelvic walls, lymph nodes, and surrounds the iliac arteries. The doctor did not indicate that radiation would be a possibility. I would sure like to see PSA undetectable again.
Zytiga's worse side effect is frequent or rather constant urination. I take Gemtessa at night and solifenacin in the morning to keep it under control and be able to sleep at night. Dexamethasone not only dropped PSA by 50% it increased the side effect.
My doctor knows my health background, which is not perfect, so I hesitate to suggest any drug.
I will be speaking with my doctor in 3 weeks before he passes me off to his nurse for continue more of the same. I don't feel it is doing the best it can and am willing to try anything to see the PSA around 0.2!
Thanks for your concern and sharing your Journey. Best of luck to both of us.

@duberdicus
With all of the different things, the PSMA pet scan revealed you would be most likely to be treated with chemotherapy or Pluvicto.

If there are more than five metastasis found, that’s usually what they want to do and the most effective treatment.

As you know Zytiga side Effects are pretty hard on the body. You shouldn’t be afraid about being proactive with your doctor. Recommending switching to Nubeqa Would not be out of his knowledge as a good choice.

Here’s the thing, there are four drugs called ARPI’s. They are Zytiga, apalutamide, Enzalutamide and Darolutamide. They’re all used with ADT to treat advanced prostate cancer. Requesting a switch to Darolutamide Would not be an excessive thing to ask, but it would make a major difference in your side effects. It also could bring your PSA down. You do need chemo or Pluvicto At this point however.

I’m sure your doctor will be talking to you about that. When your PSA doesn’t go down Close to undetectable, and you have so many spots found that really is the only effective treatment.

Hey Guys,
One last comment since my recent follow up with my radiologist who is thankfully very candid with me as I am frank and candid with him. In short, based on my age (approaching 75) and the nonexistence of sexual / romantic capacity...( and frankly, not sure my wife 15 years my junior and nearly a 1/4 century marriage; not sure we can continue on this course.) He told me not to have much (code word for 'any') expectation that my body will reconstitute its former capacity. The "boys" are decimated and unlikely they're going to 'wake up'. And that folks is the finality of ADT (lupron) protocol that these doctors did not really punctuate this affliction in any definitive discussion. "Oh, you're in great shape, you can rebound". No, its called chemical castration for a reason. They just don't use that 'nasty language' because it doesn't Sell very well.
Thanks for your commentary. rlm

@wwsmith, what treatments did you have? Did you have ADT? How are you doing now?

@colleenyoung I had a 3+4 Gleason case contained in the prostate with a 0.81 Decipher score. I chose 26 IMRT radiation treatments along with one HDR Brachytherapy radiation session as a boost. Because of the high Decipher score I was also advised to do one year of ADT. I finished the ADT in February 2025. My testosterone is now back to 372 and my PSA is 0.18. I think the treatment has worked and I am feeling great!

In your husband's case, did he ever get a PSMA PET scan to locate the cancer lesions? And if so, did the doctors ever say anything about using SBRT radiation to kill those lesions?