My boyfriend, Jon, has PEComa on the bone not the soft tissue (skull, spine, ribs and more). He presented mid July and was only diagnosed five weeks later due to the rarity of PEComa. He is taking sirolimus (Rapamune) and the tumours on the spine haven't grown but the ones on the skull are getting bigger. He is about to have radiatherapy on these two tumours. PEComa doesn't respond well to chemotherapy and I'd like more information about drugs for this cancer type.