I have been taking Xtandi for 9 months and my psa has gone from 3.6 to 0.1.
I still suffer from fatigue and hot flushes. I'm curious if I can reduce the dose from four pills till two.
The prescribed dose is normally the same for all body weights, I weigh 152 lbs and take the same dosage as someone weighing 300 lbs.
Also the half life of Xtandi is 7 to 8 days so missing a dose should not be a problem
My oncologist does not agree and says why change a winning formula.
That's a great response! I agree with your oncologist. You can manage the hot flashes with estrogen patches (+tamoxifen). Exercise can help with the fatigue. The Xtandi won't last forever, unfortunately.
My hot flashes (excuse me, "power surges') are in the less than nuisance category and fatigue has become just spells during the day, which I can get through easily. Exercise is, as you say the answer there. My primary oncologist wanted to switch from Xtandi to Zytiga when my PSA started rising, but I said no, it's still well within the normal range and the Department of Veterans Affairs oncologist (and they don't just have one oncologist, they have a panel reviewing every case) agreed with me - i'm still getting benefit from Xtandi. Well, my PS has plateaued in the 4 range and as you say why quit a winning combo? Xtandi will give plenty of warning when it's going to quit.
I have been on Xtandi for over 3 years now. Last fall I was given the option of reducing the dose from 4 to 2 pills a day when SE's became unbearable. It seems that the longer I'm on it that the SE's are cumulative and last fall I had a sickly, poisoned feeling, that's the best way I can describe it. I have been using estradiol patches for about 4 years, they really help with typical ADT SE's but didn't do much to offset the Xtandi effects I was feeling (I'm assuming it was from Xtandi). I excercise daily.
Dr. Myers and Dr. Sartor agreed in my case with my PSA being undetectable for 3 + years that I could consider reducing the dose from 4 to 2 pills. I was hesitant, but went ahead and did so. Initially I felt somewhat better but now a year later I still am experiencing fatigue, cognitive issues etc. but not as bad as I felt last year at this time. I have also been getting daily headaches which started a few months ago, this is a common SE with Xtandi, I manage these with a low dose of ibuprofen. Sartor recommends staying the course with Xtandi and to manage SE's.
I can't argue with the results, PSA is undetectable, scans show now active mets, I was DX with GP and multiple mets back in the spring of 2014. You might want to tuff it out for a while till you get a solid run with a < in front of that PSA number meaning it's undetectable. And definitely try the patches they help. Meanwhile I'd follow doctors recommendations.
Ed
Can u clarify, u were eligible for a scan with an undetectable PSA? Which scan are we talking about?
Axumin Scan, it was performed to assure efficacy of treatment since originally I was widely metastatic. I’ve had 3 over the last couple years.
Ed
Thanks
So you were eligible for auxium scan when PSA was undetectable and Insurance covered it? Strange , I constantly read, including on this site, that your PSA has to be over a minimum level to be eligible.
I was having some lower back pain that is likely due to a disk issue and sclerotic areas but doc wanted to make sure it wasn’t due to spine mets. So scans were done.
You have to be recurrent, which he was.
Ok thanks
Interesting, I had reoccurrence after RP-maybe I might qualify, just thought PSA undetectable, meant scans didn’t yet have the resolution to pick up anything at that level
You are right that low PSA has very low detection rates. But as long as PSA exceeded 0.2 after prostatectomy, Medicare will cover it.
If you’re referring to me Allen I was not recurrent.
"Had my prostate and several nodes radiated using IMRT. This was an aggressive approach, debulking the main tumor to prevent further mets and enhance HT." I think they allowed Axumin because of that.
No, it was more due to lower back pain I was experiencing and considering the extensive mets I had throughout skeleton at dx.
I have been on Xtandi for about 1 year now. I started on 4 / day. The Onc and Uro said I could drop to 3 or even 2 if I wanted after I reported some unpleasant side effects. I stuck it out for a bit at 4, then for a couple more months at 3, and now I am on 2 / day. Since this is more of a protective prescription, I didn't feel there was a huge risk, and the docs agreed.
I now feel almost human. My need for sleep dropped from 14 hrs/day to 12. My fatigue factor went from quite high to almost normal. My hot flashes dropped in frequency and severity. It took a few months to get there. Remember, you mentioned a half life of 7-8 days for the drug. The means that after 15 days off the drug, you would have as much of it in your system as you would have if you have been doing 2 / day. But it also means the drug will not disappear from your body for a long time - theoretically never.
So Xtandi effects can get better for some people on lower doses. YMMV. Keep up the good fight, never give in.
160 mg and I was and invalid.....cut to 120 mg and was better within 3 days...cut to 100 (2 for two days, 3 the next) better yet. Now on 90 mg (3 days on 2 pills, 1 day on three pills) and I am healing from the side effects. Neuropathy retreating, swelling of ankles way down. Just had more toe nails removed Tues. acct fluid and bubbles under them, all from excess toxicity from Xtandi. Been off Chemo for 7 mo. but still on Xtandi to hold PSA down, currently at 0.129..Strength and energy recovering with PT. Drs say in remission and now set to retire middle of next month---two years late, but needed the health insurance from work.
Xtandi timing
Xtandi dosage
Xtandi and Intermittent 
