My dad started xtandi and prednisone. His PSA was 13 since taking his meds and shots the PSA went down to a 4.0 Doctor office called and young lady told me to tell my dad to stop taking meds and to come see the doctor on June 12. I thought my dad would be taking the meds indefinately along with lupron and xgeva shots. I couldnt ask why we should stop the pills all she said were numbers were low. And come in and talk to the doctor in 2 weeks. Anyone know why he would stop the pills I thought they want the PSA at 0? And pills would be taken as long as it keeps the PSA very low?
Thank you,
Olivia
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Olivia007
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The doctor's office instructions are certainly confusing. Did she say exactly what "meds" to stop taking? Did she say what "numbers" were low? Did she mean "too low", or "low enough"? A PSA of 4.0 is certainly not too low, or so low that it indicates that the Xtandi isn't useful - just the opposite. The fact that it brought the PSA down indicates it is useful. I agree with your understanding of all that.
Is it possible that there are some other "numbers" that have gotten too low?
I take it she also said nothing about what the doctor wants to do on June 12.
I think the best thing to do might be to call and ask the doctor to call and explain what's going on. Who knows if he'll do it, but it would be helpful if he did.
I concur with Alan. Call the doctor, and clarify. This situation isn't like just bringing something like a glucose level back down into the old normal range again, then backing off.
Charles
(Reminds me of the time I established a new Primary Care Physician about a year ago. When they did some introductory basic blood work, my Testosterone was <20. Someone on the office staff, unfamiliar with the fact that I was on Lupron and being treated for advanced prostate cancer, saw that result, freaked out, and wanted me to immediately make an appointment to see the doctor about my abnormally low Testosterone level. After I explained "that was a good thing", the situation calmed down.)
My primary physician called me in a panic with the same thing, "Your T is way too low". I said, "That's good". He said, " But it's non existent". And I said, " It's supposed to be that way, I'm on Lupron". He said, "Oh". I said "goodbye". It's quite a shame, because now he is riddled with cancer, and his outlook is very dim.
I agree with above comments. Nobody is going to be complaining about a PSA value that's "too low" so my guess is that there is some other value that's too low, possibly from a blood test.
No I looked at all my dads bloodwork and all looks good.nothing is out of range so until I see the doctor I can't understand why we will stop the meds? I'll keep everyone updated
I agree with the above comments and feel you definitely need a good explanation from the doctor. You need to understand what you are doing and why and what numbers they talk about. It is not good enough to just say "Stop it!" We need to know why. Good luck!
I agree, to leave someone hanging like thata short period. So unprofessional , its a dam shame. At least we don't have to remain in mystery long as the next appt. Is june12. Being off any of these meds for short period won't hurt. Want to keep that psa going down. Good luck. Rocco
My understanding is that the Xytiga side effects are unpleasant and intense. Personally I am interested in quality of life as well as duration. Petrochemical medications (which these all are) often create more problems than they solve. I spend hours every day dealing with the side effect of lupron. I cannot even IMAGINE adding another drug to this, and having it even worse., I find prednisone to be hellish, and you have to take it with zytiga. no thanks
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Xtandi failed awaiting new therapy
New here..looking for others experience with XTANDI
xtandi 
Zytiga to Xtandi
