After 13 years, radiation, ADT, recurrence, brachytherapy, recurrence, and more ADT PSA is below detection limits. I suppose it’s Jodi ding in my SV waiting to start again but for now the PCA is asleep.
Hope to start a Lupron vacation - Get my joints back, stop hobbling, do some ski touring. Question is what about the bicalutamide (Casodex). Do I walk away from it for a while? Telecom with Uro next week.
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kreg001
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Thank you, always. I get that. But, from my perspective, the side effects started with Lupron Depot. Foggy headed, poor endurance, joint pains, ... And, PSA didn't go below 3-4 range even after a year of Lupron. When bicalutamide was added the only additional side effect was higher blood pressure alleviated with linosinopril. And, within weeks PSA crashed from 3.8 to 1.7 then 0.8, 0.2 and now it's <0.1 by Roche ECLIA. Quarterly measurements.I'm not as anxious for T to return as I am to stop hobbling about. Have kids, grand kids, and pleasant memories of great sex. With no prostate left after so much radiation even when I could still have sex it wasn't very pleasant for me. Nor do I care about muscle definition.
My thought, or hope, is that stopping Lupron for awhile won't awaken the cancer cells since bicalutamide is still circulating, but will stop the pain in my joints and restore some endurance to help my exercise regimen. That's where my thoughts lie at present.
Next Lupron scheduled for next week. Requested a telecon with my uro before office visit so any additional comments appreciated.
Most urologists who are surgeons first and foremost, cannot adequately address these questions. You need a RO for immediate questions, and urologic medical oncologist primarily for the long term.
Appreciate that. After the auxumin scan that only showed PCA in the seminal vesicles I met with two RO and two MO as well as my URO and another URO. Consensus was not achieved but most optimistic outcome seems to be a specialized RT of the SV by a guy in Michigan. But, I need to loose weight. Hoping the Lupron 'vacation' will help me get 'in shape' by alleviating joint pain and poor endurance.
It sounds like your adrenals are producing androgens. If you feel better on just Casodex, it sounds like a good plan for a bit. Eventually, the cancer learns to feed on bicalutamide.
You don't mention anything about scans - so your status isn't clear to me - BUT - There is a delay to 'T' recovery AFTER stopping ADT.
Delay could be 18 months + - IF you ever recover due to time on ADT.
The 'good news' ?
You MIGHT be able to use bicalutamide in the future AFTER ADT 'recovery' and continued good scans NOT showing significant progression.
I use daily bicalutamide and have been using it for about 6 months. I had a BCR (progression from original Dx of G9 / N1) after an ADT vacation (about 18 months) with 1 bone met (L5).
My PSA went from 11+ to 0.06 today AND there's a sign of 'recession' - the affected areas have shrunk or are slowly disappearing.
My original Dx was about 4.5 years ago.
My medical team say I'm doing 'extremely' well and I'm LUCKY to be responding this way.
Bicalutamide appears to be working very well for you so far. So you should be able to drop the Lupron and continue bicalutamide mono therapy ( or possibly add dutasteride to it). You will like the reduced side effects and having some T back. As long as PSA stays in control you can ride it as long as it works.See a RO, possibly a new one at major center, to discuss feasibility of target SBRT to SVs. Did they previously treat the whole pelvis LNs? While there the RO could give short treatment to breast tissues to avoid gynecomastia from bicalutamide mono therapy.
Thank you.My Uro just agreed on the phone. I'll drop the Lupron and start PSA tests with T testing in late December.I have been in contact with a very good RO in Michigan who has success with SV treatment. I think Tall Allen pointed me to him. He won't go to his tumor board until I get back to 'fighting' weight. I feel Lupron makes that very difficult with joint pain and poor stamina. Hope/plan is no Lupron, work out, and go to Michigan in the spring/early summer. It's a plan. We'll see if there are any detours.
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