Weak Legs

[PSAontherun]

I have been on Xtandi for about five months. This past week weakness in my legs have hit so bad that I am using a cane to keep my balance. Has anyone experienced this? I am taking four of the pills each night. May call and see if I should cut back on dosage, if in fact the Xtandi is causing the weakness. Thanks

[Shooter1]

At 5 mo. pt. on full dose Xtandi, I was a complete invalid. Cut dosage to 120 mg /day and was able to do some stuff on my own, like walk up stairs. Cut to 100 mg and could wiggle my toes. and walk up stairs without holding both walls. Cut to 90 mg and could carry 2 cups of coffee up stairs and go back to work as locomotive engineer. Cut to current dose of 86mg/day average and have a life. 3 pills on Sunday and 2 pill all week. Xtandi can and will cause weakness in legs and wreck your balance. I still have weakness in legs but not so much as to need a cane. Often have to swing my leg to get first let up into car and hand assist other leg and must have feet directly under me to get up out of chair. New normal kind of sucks at times, but even if my 3 yr. old grand son can out run me, I can still enjoy the race. Xtandi holding PSA at 0.122.

[PSAontherun in reply to Shooter1]

Thanks very much for your information. I kind of suspected this, because the info sheet on Xtandi mentioned weakness in the legs but did not think it would get this bad. Meeting with my oncologist tomorrow to discuss and hope he will say okay to reduce dosage. Can not keep going on like this! Thanks again!!!

[Shooter1 in reply to PSAontherun]

I discussed my life with my wife and we decided life wasn't worth life living as it was. Made cuts on our own and informed Onc. after I had a life again. He wasn't happy and said I should take 160 mg when I could. Never going to happen and he finally accepted my body wouldn't tolerate more than 86 mg. Sometimes you have to not only be your own advocate, but take things into your own hands and have QOL you can stand.

[Tjc1]

Hi, yes its pr ok bably the Xtandi. I had the same thing at fuull dose. I drpped it to 1/2 and things got tolerable.

Good Luck!

[Kaliber]

same weakness here on Xtandi. can barely get into my truck in the driver's side and have to reach down and swing my legs in on the passenger side with my hands. every morning after I take the Xtandi ( 4 40mg pills ) I have what I like to call the Xtandi shuffle. makes me extremely weak and out of breath if I try to walk too far. there is a great probability that the Xyandi is causing your weakness as well. I thought of cutting back but I'm getting such good results that I just don't want to mess with it. for me , the shuffle is tolerable considering the alternative. I stumble and can hardly walk and it's a big change in my life but when I consider the elephant in the room .... guess the side effects are just stepping - stumbling into the giant steaming piles of dung. I chased a herd of those big garden snails out in the yard this morning and they got away ( insert elmer fudd emoji here )

[abfed]

I came off Zytega as it has failed an they put me on Xtandi - been on it for about 1 month full strength 4 pills per day. It took a while but hope things do not get worse - noticed big changes in last week or so. Massive weakness in legs. I have massive mets all over and probably will not change dosage - the lowest I have ever gotten is about 4.5 even with the lupron and Zytega. Pain came back and bone scan showed diseased had advanced and PSA doubled in 3 months to I am hoping the Xtandi works.

[monte1111]

Have leg pain off and on. Getting up off the floor is very challenging. Taking other meds. So whose to blame. I'm able to hobble down steps and live with it. Sometimes go down steps like a real person. Will stick with the 4 tabs. Has worked for 19 months, so far.