Hi all. First posting here. I "had" nmCRPC and was put on Erleada about a year ago. It worked great for a while. My PSA went down to .15. Then three months ago it went to .3. In addition, I was having a great deal of problems with side effects. Basically, I would feel good for a few days, and then have 3-4 days that all I could do is nap all day. My Oncologist had me go down to 50% Erlead dose. I felt fabulous the first week, best in years.
Background: I was diagnosed in 12/15 and did radiation summer of 2016. Had such bad side effects on Zolodex that my doctor, who has 4000 patients said my side effects were 50% worse than any patient he had seen. Turned out I had internal bleeding from the Chemo which a colonoscopy sealed up. Added Casodex but that was so bad I was suicidal. Last year they took me off Casodex and put me on Erleada when my PSA started rising again. So have been on Zoladex and Erleada since last year.
So this leads me to the present. My visit with my oncologist was the third month in a row my PSA has risen. from .15 to .3 to .4 to .6. I thought he would put me back on Erleada, but he said he didn't think that would work. So he is recommending Xtandi (along with continuing Zoladex).
My thought is I just lost 3 years of my life. I looked at Erleada lasting at least the median of 40-48 months, then Xtandi for 20 months, then Chemo for 18 months, then I guess hospice. So I was calculating 8-10 years, and now I think it would be under 5 most likely.
Am I wrong? What has the progression from starting Xtandi been for any of you here? I feel like I got kicked in the gut. I asked my doctor if the scans have been clear, does he still think it is localized. He said the rising PSA pretty much says it has spread, even if we can't see it yet. So I guess I am now Stage 4?
Any insight on the progression (and I know it is different for all of us) would be helpful. Thanks.