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Learned Something New Last Week

Prostate Cancer | Last Active: Jan 26 10:42am | Replies (26)

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Profile picture for robertov @robertov

@jc76 Thanks! I always appreciate your perspective. I have Gleason 8, so it was hard to argue no ADT. I also planned on 3 a month trip, which I decided was important. Being put on Orgovyx allowed me to squelch PSA, while I researched my options. The only option I was offered was IMRT and no other options. Not good enough for me.

On ADT I went from 5.74 -> 0.94 -> 0.41. Now undectible. I now realize I won’t know my nadir until I stopped the ADT and waited for testosterone to come back. Their recommendation was 18 months of ADT. I read recently JAMA article on how long ADT is needed after treatment for high-risk. Offering some hope. But with no nadir baseline, it is hard to make that call. I won’t really know how successful the treatment is for a couple of years.

My RO & team are just in ‘data collection’ mode and don’t really want to think about what I want. These are among the many things I should have understood but didn’t. Thanks for everyone for their thoughts through this!

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Replies to "@jc76 Thanks! I always appreciate your perspective. I have Gleason 8, so it was hard to..."

@robertov I assume that 5.74 was pre-treatment and that the next twe were after 3 and 6 months on ADT, with one year of ADT to go. Is that right?
You mentioned that you will not know until after you stopped ADT. I was told the same thing by my oncologist.
I was on Orgovyx for 6 months only. My PSA history is 7.9 & 10.05 two months apart pre-treatment. 0.3 & 0.22 after 3 & 6 months on ADT, 0.99 at three months after stopping Orgovyx. My radiation the rise in PSA is not a concern, it's expected with my testosterone recovery.
I have yet to see how high my PSA will be, before it starts going down to my nadir. It can be a long wait, I guess one to 2 years.

@robertov

There are recent independent Harvard, Duke, and Swedish studies that say for aggressive prostate cancer some men benefit from a higher or normal level of testosterone. Duke is doing AI based research to determine what are the characteristics to determine which men benefit from higher testosterone. This could take many years. For now, follow your doctor's advice.