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Starting Orgovyx - any advice based on experience?

Prostate Cancer | Last Active: Apr 23 3:49pm | Replies (14)

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@kujhawk1978

Well, you are on top of your treatment and mitigating the side effects...

With that GS you are in Grade Group 5 so the 24 months of ADT combined with an ARI makes sense as does the radiation to the PLNs.

My only other thought is whole pelvic lymph node treatment with the radiation vice the pelvic lymph node basin. Not that I'm smart enough to appreciate the difference from a radiologist's expertise...

When the C11 Choline scan showed the four PLNs, we agreed to treat those with boosts and wider margins, then for good measure, radiated the entire PLN system.

It's been 10+ years, some see it as hard to understand when I say "I've been fortunate," but I have only been on active treatment three of those ten and it has never gotten into the organs, bones nor have I become castrate resistant.

Beside "good fortune," I've stayed on top of my PCa, actively monitoring while off treatment, having decision criteria when to go back on, have been insistent that without solid data to support continuous lifetime treatment, we treat for defined periods with decision criteria as to when to stop. My medical team are active listeners and support shared decision making. When I went back on treatment last April, my radiologist (the same one for all my radiation treatments) asked what I wanted to do. My o, new, wanted to do 24 months of Orgovy and add Xtandi as potentially curative. I looked at him, looked at my chart, talked about the Embark trial and said, we are not going to cure this, we are going to manage it as a chronic disease. He thought for a minute and said, ok, let's do 12 months ADT, hold the Xtandi if you're PSA doesn't drop to undetectable within the first three months, if not, we add it. Then at the 12 month mark, let's see where we're at and decide to stop and actively monitor or continue.

On the 4th of April, the one year point, we met, I layed out the argument for stopping, I could see he wanted to do six months more but he didn't have the data to argue for it in terms of increased progression free survival, overall survival...I said the risk is I become castrate resistant. He agreed, knowing that he would see me every three months for labs and consult, image when necessary and would go back on treatment willingly.

Kevin

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Replies to "Well, you are on top of your treatment and mitigating the side effects... With that GS..."

Kevin, we think much alike. I’m a retired engineer so much of my life‘s work has been guided by data. My oncologist who I think is absolutely terrific is very pragmatic and a good listener. Both he and my surgeon made a very compelling case for the use of both 1st gen and 2nd gen ADT from the get-go plus radiation for the best possible chance of a cure at this stage since the known disease is limited to one lymph node and the prostate bed shows no evidence of disease. Having read the embark trial, I lobbied for a short course of ADT. I was advised against that so I lobbied for Orgovyx over Lupron for hopefully better quality of life during and post treatment. In the event that I can’t achieve permanent remission, I am at least hopeful that the disease can be managed and I have 10+ years ahead of me.

Thank you again for your thoughtful words and I wish you my very best on your journey.