I've been on Erivedge for 13 months and my metastatic BCC is stable (has gotten in my lungs so for me stable is about as good as it gets ... so far) but have all the usual side effects. Hair and taste loss are annoying but better than the alternative. Muscle spasms can get really bad for me, especially after exercise (I like to bike hard). My fitness has declined but I don't really think I have fatigue like some report. Was wondering if anyone has tried anything to reduce the taste loss and cramping. I had a suggestion to try Zinc for taste and Calcium and Magnesium for cramps, but the Zinc did nothing, the Calcium seemed to make cramps much worse and the Magnesium doesn't seem to have done anything either. When cramps get real bad I just reduce dose to 5 days a week and that seems to help.
I haven't seen any metastatic patients on the list, mostly advanced BCC. If you are out there love to chat. I had really good luck with Nexavar for 18 months holding me stable before I became resistant to it in case that might help anyone else. I did the genetic test from Foundation Medicine and seems I have the SMO gene defect Erivedge was designed for, so glad its available!