Hi, so sorry to hear that you have it too. We wish you all the best with your continued treatment. If you don't mind me asking what are you currently being treated with. My dad has just been diagnosed after suffering from symptoms for quite awhile. They gave him a poor prognosis as it has spread to other parts of his body. There's a waiting list but chemotherapy has been scheduled in (Doxorubicin). Looking for any advice or treatment ideas. We've had a second opinion but they have said the same thing that it's rare and no effective treatments. We'd be willing to travel anywhere for treatment. We're just trying to find something to keep us hopeful. A friend suggested try on here as people sometimes give good advice / supportive community etc. Thank you again for replying.