I've only posted here a couple of times but read everyday and wanted to share some positive news.
My husband was diagnosed in October 2014, PSA over 700 with widespread bone mets.
He started Zolodex which worked well for 2 years, PSA staying at 1.5, Bicalutamide was added when PSA started to rise and that worked well for another year.
PSA started to rise quickly and he started Enzalutamide in Jan 2018, within a month PSA had dropped to 0.1 and has stayed there, latest PSA today still >0.1.
No side effects, no pain, a little fatigue, but still very active. I know we've been lucky but there is hope even after a pretty devastating initial diagnosis.
Love and strength to everyone
Written by
LB100
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Thanks for the post, LB100. Yes, starting out with lots of mets, pain, and/or crazy high PSA does not always mean the cancer won't respond well to treatments. Sometimes there can be some lucky biology happening. Similarly, I've been on Lupron, a shorter bit of Bicalutamide, then some Provenge, and most recently, Enzalutamide (Xtandi). PSA roller coaster ride has been from a ridiculous 5,006 to 1.0 to 95.0 to 1.2, and most recently 3.1. My anecdotal individual Survival since diagnosis so far is 5 years and 2 months. I attend a few support groups, and I've seen a pretty wide range of responses & response durations to various treatments or combinations of treatments. Overall, I am humbled and grateful.
Gusgold had success adding indomethacin to Xtandi--got him to undetectable---clinical trial going on now I believe...if your kidneys can take it and the stomach(irritation)--may be worth a shot...Ask your MD--indomethacin is prescription...
That is a great response to Xtandi and wonderful that he has good QOL with no SE.
My husband hasn't been as lucky with Xtandi as he is on half dose and it has turned him into an old man in one year. However, he feels lucky to experience old age and life after 18+ years of this nasty stuff.
You are in the best of times right now with this disease so be sure and enjoy the moment. I try to remind myself every day to be grateful he is still alive.
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