Started my PC journey 9 years ago, diagnosed with Gleason 9, and a poor prognosis. I was told surgery was not an option and started radiation. 54 treatments kept my psa under 1.0 for almost 3 years, then Lupron on and of for another 3 years...very effective. Side effects were terrible but eventually almost disappeared except for weakness from no Testosterone. Another year or so later psa began to rise. Bone scan 6 months ago showed metastasis was beginning but not worthy of treatment just yet. Switched from Urologist to Oncologist for more targeted treatment. Lupron was continued but in a few months psa started to rise. along the way Casodex was added with minimal effect. It was decided to start Xtandi because Cancer showed definite signs of Androgen resistance mutation. I was able to receive patient assistance for the incredible cost of Xtandi.
After only 3 weeks it was clear that it was working so well (psa from 15 to 4.0) that the dosage was decreased from 4 pills a day to 3. Along the way serious stomach issues developed with almost complete loss of appetite. Stomach pain was so bad my PCP called for an upper GI series to look into the problem...nothing found.
I'm still unable to determine if it's the Xtandi, and if it will eventually subside. I may have had a stomach virus, but it lasted for 2 weeks, which is not typical of a virus, and is only now getting slightly better each day. Sometimes all I eat for the day is a slice of toast. I'm going to ask my Oncologist if I can stop Xtandi for awhile to see if that's the problem, even if it is I'm pretty much left with no choice (?) Anyone else have this issue?