Prior to beginning trial last June I had just gone castrate resistant and PSA was at 3.3. A few weeks after the last of four injections PSA settled in at .25 so there was still something left. However PSA now has quickly shot up to .75
And since I stopped Orgovyx and Zytiga, Testosterone is going up. UCLA did a PSMA scan a few days ago that seems to reveal two small lesions- one in upper spine and nearby rib. Unfortunately the scan results are too complicated for me to understand and I won't see RO at UCLA until next week. Interesting that both he and MO at COH said that returning to ADT for now was not necessary.
I was also approved for Provenge yesterday and am trying to start that ASAP as it's most effective at low PSA. I'm guessing that more radiation is in order--just trying to decide between SBRT at UCLA or treatment at California Protons with Carl Rossi.
Happy to answer any questions and would appreciate all input.
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That’s kind of what I assumed. But TD at COH has not said anything about starting up ADT again. Maybe she’s just waiting. Looks like I’ll start Provenge in two weeks.
see dr Kishan at ucla. He did SBRT on my mets and I did Provenge and ADT and Zytega right after. It’s thought that the radiation followed by Provenge will have a synergetic impact.
Kishan is the absolute best in my opinion. I know TA thinks highly of him too.
Weather to stay on ADT? From what I experienced is much different. When I went metastatic the doctors wanted to see 3 rises in psa levels before acting(maybe an insurance thing). That was 4 years ago or so. I have been on Xtandi and it worked for this time but PSA is climbing again. I did have a two year break from ADT because of the Covid crap.
This time they wanted me back on ADT immediately. I had to ask why if it failed me years ago, why keep taking it. Well my oncologist pretty much laid it out and said if I don't take it I might have trouble getting other things paid for. I went back on it for 18 months but it's seems not to make s difference.
I imagine I'll get a PSMA Scan pretty soon to see what is going on.
Radiation oncologist Dr. Kishan at UCLA said that he could treat the 2 half-faded spine lesions in one session of SBRT without ADT. That was completed yesterday and this Tuesday I will have my second Provenge treatment. One more after that in two weeks and I guess we see what happens.
My plan is to do one more complete blood test in two weeks to see if my PSA is continuing to skyrocket along with rising testosterone. If so, I may go back on Orgovyx for a while. What do you guys think?
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