I am 68 years old. I have been stage 4 PC for almost 7 years now. My doctor is an out of the box thinker and I love him.
After my stage 4 diagnosis with 3 mets (ribs, ribs, pelvis) I did the triplet therapy (adt/zytega/chemo) even tho the triplet therapy hadn’t yet been proven to extend survival and I did SBRT to my three mets. . After 30 months (12 at .02 PSA) I did my first “vacation”. Keep in mind that I originally did chryo to the half my prostate that had disease so my “normal” PSA is probably about 2.5 for my remaining healthy prostate. After 19 months of vacation, my PSA went from .02 up to 5.32 at which time we found one met on L-5 from a PSMA scan.
I hit it the one met with SBRT and went back on both Lupron and Zytega. But I wanted to do something extra this time. I looked into Provenge. Since I was still castrate sensitive, insurance would not pay. I spent a lot of time with my MO looking at the the detail of the Provenge trial results, specifically the break down by tranches of PSA. As it turns out, the lower the starting PSA at the time of treatment, the larger the increase in median survival. For example, the entire trial only showed a 4 month survival advantage. However, in the lowest tranche of starting PSA , the median survival increase was 14 months. Keep in mind that even that lowest PSA group had a relatively high PSA at the time of treatment. I think it was something in excess of 10. So I thought with my PSA at about 5, and still being hormone sensitive, it might work really well for me. You may ask why the company never did a trial for hormone sensitive men? I was told that hormone sensitive men were expected to live too long so proving an increase in survival (the gold standard for trials) would take too long and be too expensive and they didn’t know if it would lower PSA. . Anyway I bit the bullet and paid $160,000 out of pocket to give it a try. Stupid expensive for sure but you can’t take it with you and my family gave their blessing. My PSA quickly went back to .03 (likely from the ADT/Zytega and SBRT again) and I began vacation # 2 after a year of treatment plus Provenge.
Fast forward 27 months into vacation # 2. Shockingly, this time my PSA peaked at 2.71 7 months ago and my most recent last two PSA readings were 2.3 and 2.29. That is down over 15% in the last 7 months. Remember on vacation # 1 my PSA kept going up all the way to 5.32 after only 19 months. And my scans have all been clear
Now my T Hasn’t recovered much (only 60-but I feel great) but It stayed low on vacation # 1 too. The only real difference between vacation # 1 and # 2 is adding Provenge. Provenge was only shown to increase survival with little impact on PSA but that was for castrate resistant men. I would like to think that my far better results on vacation # 2 vs #1 are related to the Provenge. Wishful thinking perhaps but 5.32 after 19 months vs 2.3 after 25 months?
By the way I lift weights religiously 3 times a week for an hour . That has to help too….
Schwah