In November 2013 I had severe lower back and left abdominal pain. After tests in hospital for 3 days I was confirmed via tests, a CT-directed biopsy of a lymph node, CT/MRI scans and a NM Bone Scan as having advanced prostate cancer, metastatic to numerous bones and lymph nodes, and a ridiculously high PSA of 5,006. I went on immediate ADT using Lupron (after a short course of Casodex to prevent a testosterone "flare"), along with monthly Zometa. My pain subsided rapidly, and my PSA dropped to below 2.0 within about 4 months. Getting the sudden news that I had an ultimately incurable disease was a big shock for both me and my wife. We spent several months just wrapping our heads and hearts around it. We started going to local support groups, and have found them highly helpful ever since. We took some practical steps to get our estate planning & health related documents in order. I have had the usual bodily side effects of ADT, but nothing I can't live with. The intense focus on my changed life and mortality has, in many ways, improved some things, and my wife and I are closer now than ever before.
Over the next two years, my PSA low point was 1.0, started creeping back up around 16 months out, dropped slightly for a short time when re-challenged with Casodex, and eventually reached around 5.0.
During the third year I consulted with other research-level doctors at a couple of West Coast U.S.A. places, and eventually had some familial DNA testing of about 50 genetic markers (all negative), had a PSMA PET scan when my PSA was passing through 60 (about 10 areas active), had 2 of 3 Provenge treatments, and, finally, with a PSA of 94.8, added Xtandi.
In the past 6 months I am still on Lupron "for life", on reduced Zometa (every 90 days), and, since adding Xtandi, my PSA has dropped from 94.8 to 3.4.
Yes, I can't do some things that I could do 3-1/2 years ago, and I have had the usual changes to my body that come with ADT, but, overall, I am very Grateful for as high a quality of life as I have had so far. I'm still working on some other areas, like Compassion, Acceptance, Forgiveness, Mindfulness, Patience, etc. I also have some times when I am anxious, fearful, or discouraged, but I find that those feelings have a way of passing in due time as "live with" them for a while. And, I attend several local area Prostate Cancer Support Groups, and try to listen and share and learn new things every month.
After 7 months on Xtandi my PSA is still declining, from approximately 95 to 1.9. I have light fatigue, comparable to the trend of already being on ADT with Lupron for over 3-1/2 years. Light exercise helps. Hot flashes are about the same. My skin is dryer. I have developed a very slight amount of Gynecomastia since starting Xtandi, but it is not a major concern for me.
Charles's e-mail address is: cetarleton AT yahoo.com (replace "AT" with "@")