ADT, maybe not? Anyone opted out of ADT?

@madpuppy74

Orgovyx is a gonadotropin-releasing hormone (GnRH) receptor antagonist. It works by blocking the body's production of gonadotropin-releasing hormone (GnRH), which is a hormone that stimulates the production of testosterone. It is a form of androgen deprivation therapy; taken once daily by mouth its side effect profile is similar to Lupron, though it may have fewer cardiovascular risks and is said to be more quickly reversible when discontinued.

@madpuppy74
Orgovyx Is ADT just like Lupron or Eligard. The difference is it’s a pill not an injection.

Works just the same to reduce your testosterone as close to zero as possible.

@madpuppy74
When you are having side effects that really make you uncomfortable you have to be proactive about getting something done.

You could tell your doctor that somebody has been told by their Genito Urinary oncologist that this is a good solution And you would like to try it. In my case, it was a really incredible solution to the problem. A real benefit of it is that you don’t get gynecomastia from it.

I got the shots for five years, every three months. I had one about six months ago when the hot flashes were getting too much with Orgovyx. Fortunately, I found another way to stop them.

@jonesfit65 Has no doctor ever mentioned getting a PSMA PET scan done? That is far more accurate than a simple CT scan on determining where the cancer is. How about an MRI scan of the prostate to see how many lesions there are and what PIRADS score each one has? Beyond doing hormone treatment which has suppressed the cancer and driven the PSA down to 0.05, there should also be some discussion about using radiation to permanently kill as much cancer as possible. Be sure to bring all these issues up with the doctors at the Christus Cancer Ctr.

@wwsmith Tell me about it!!! No, I had to ask even for subsequent CTs. He has a growing pancreatic cyst is the only reason an MRI was done & it showed unremarkable prostate & lymph nodes, of course like you said the Lupron & Zytiga was keeping the PCa in check!! I'm really not smart enough to ever become a doctor, but are they really that stupid?!

Because I talked my husband into it, we are demanding ADT is stopped effective Nov 10. Then we plan to do all the things you suggested & that I have been researching for about 3yrs. I still don't know what PIRADS or even decipher score is, but I've been following PCF for quite a while & they are having a Webinar next Thur. re: genomic testing, which I've wanted for quite awhile. Of course , we couldn't do until some of the cancer woke up. He had a Genetic blood test by Myriad per my request that turned up not genetic, but nothing but PSAs every 3mos for almost 4yrs. How come it seems like at least 14yrs?! Again, thanks for your input. I appreciate it!

@jeffmarc ...Huh. "proactive" seems to be an endeavor of pursuit that eludes these practitioners. Very depressing. Thank you again, best regards, rlm

Reply to esteve by Pesqualie.

My PSA and biopsy were similar to yours. I had 44 sessions of radiation followed by 4 months on Lupron. With radiation I had severe diarrhea and tenesmus. I had to stop at 4 months of Lupron because of severe sweating, headaches, total body muscle aches, and brain fog. I felt like I was going crazy with little sleep because of the sweats and frequent urination. I had to sleep with no covers to allow sweat evaporation. I am 83 years old and now 7 months since my last Lupron shot, I am just starting to see a decrease in side effects. I feel like I have been in Hell. My PSA is < 0.1 and testosterone < 10 on two tests since radiation.

I challenged my RO that my research suggested IMRT + HDR outcomes were really not much better with ADT. I asked if I could skip the ADT and just do the radiation protocols. He looked me in the eye and with all the sincerity in the world said "I am 2 years older than you...and if I were in your shoes I would do the ADT/Orgovyx for 6 months...it won't kill you".

So I agreed and he was right...I am five months post and feeling fine. Weight gain stopped, fatigue bouts few and far between and overall feeling is great

@capatov Looks like I'll be on Orgovyx 18 months, and I hope I bounce back afterward. Oncologist first prescribed 24 months, but I'd be finishing after turning 75 and with less than likely full recovery. Glad you're doing well! I hope that with six months less of ADT I'll be at least six months sooner feeling better!

I have two friends, one in his 50s with Gleason 10 and after radical prostatectomy, the other in retirement and after 28 radiation treatments, who chose not to do ADT. The one in his 50s is not anticipating any further treatment (margins clear, no lymph node involvement); the other is noticing that his PSA continues to fall with each successive test.