Post Script: After my long winded post, Dr Borno just phoned. They've decided they would prefer not to rush into a break. Since he's tolerating treatment so well, and his complicated case, they'd rather not rock the boat.
So Dr Hala Borno MO and Dr Osama Mohamad RO (UCSF) are collaborating on Jim's ADT vacation. Dr Borno assumed Jim wanted to, but told him it's a personal choice and his decision. She said they would monitor closely and take action when his PSA gets to 0.2. She was reluctant only if Jim's not able to have further RT.Dr Mohamad said although they could not initially radiate Jim's pelvic bed and LN, along with Abdominal LN and possible bone spot on hip (extra pelvic spots were only seen with PSMA, not standard scan), due to prior RT & metal in the area, they could do spot RT safely.
They feel at least 12 months before anything would start happening. They said PSA test every 3 months, (which I felt was too long). And Dr Mohamad said "highly unlikely " that there would be any lesser results when restarting ADT & HT. I didn't realize that was a possibility at all, so that makes me nervous. Dr Borno says that intermittent ADT does not delay castrate resistance, and overall survival doesn't seem to be affected.
Dr Mohamad says Jim is just at the beginning of his treatment, and as time goes on, there's more treatments being researched that will become available.
So...
My take is, if Jim stays the course, no action until CR sets in. If he takes a break, more scans and RT in the near future. His numbers are excellent. He is extremely active, no pain, minimal fatique, brutal hot flashes but much less than before. The biggest setback I see is that his mood swings have become more severe this last six months. The most bothersome side effect at this point. I (and he) think a break would benefit him mentally (even if just the "placebo" effect). He says he's going to do what the Drs suggest, they've gotten him this far.
I know I posted a few weeks back. But with an actual plan, I wanted to present it again. The Drs are going to discuss together one more time and get back to us. Thank you all, sorry for the rambling. I'm very nervous.
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My gut says there's probably no right answer. I can say the treatments will probably have as much to do with what kills us as the cancer, in my opinion. Every one we do will weaken us a little more but it will also give us more time as it won't weaken us as quickly as if we don't take them.
Having taken some time off and now seeing my PSA rise I am reluctant to restart ADT but am sure I will soon. I'll have a new DEXA scan and see if the time off helped my bone density. If I am able to do intermittent ADT, I plan on doing it. That is unless some new study gives me a reason to change my mind.
What an excellent and reasonable reply. It's not my decision, but input like yours helps calm me. Part of me desperately wants him to get a break, and the other part is terrified. He's not worried at all. He says if the doctors feel it's a good idea, that's good enough for him. At first he was like "no way in h###". I appreciate his UCSF doctors, they have never gotten even remotely offended when I ask questions from information I've learned on this forum.Thank you again for your input.
So I was G9 at RP, and my post BCR PSADT is around 10 weeks and has been for near six years. I could write a treatise on this but the hard earned summary is don't panic.
I'll qualify the following by saying my belief now is that there a myriad of PCa behaviours, so some personal experimentation is needed and no answer (read MO action) will always be the the best fit.
I do not break a sweat when my psa hits 2+, six months of Zoladex will send it to a nadir, which admittedly is slowly rising and was 0.03 on the fourth holiday round.
My logic for the breaks is that I value quality over duration at every step in this journey so better bone health and muscle together with less hot flushes wins every time.
Oh, and I target 2 hours of intense exercise per day.
I am currently on my second year of vacation. I am going to UCSF next Thursday. I have two Oncologists one locally and one in San Francisco at UCSF. They collaborate together. I am metastatic to my lungs. I do get my PSA checked every 3 months. That's what they suggest that's what I do. I was fortunate that I was part of the UCSF PSMA GA 68 scan trial. It was my UCSF oncologist who suggested it. UCSF has an incredible team of doctors, and I trust them fully. I have gone through mood swings, still do. Many other issues that I feel are lessened by me going taking vacation. My quality of life is the reason for me doing it. Everybody monitors me closely, and I am told the vacations will eventually "come to an end". And I'm ready for that too. Best of luck on your journey.
Thank you Michael. Yes, I truly like that the UCSF Oncologists work as a team. They are so accessible, and really seem to care personally. I believe the reason they decided to postpone Jim's vacation is the fact that they were only able to do limited Radiation up front. "Partially" treated. I do hope Jim eventually gets a vacation. In the meantime, hold the course.
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ADT vacation with bone mets?
