My Mom is fighting this diagnosis with chemo through a clinical trial at John's Hopkins. Her doctor is extremely attentive to any nuance or change in her daily activity or energy or pain levels. He has been a great comfort to her - her "knight in shining armour". He just lost a patient with the same diagnosis and this man lived 18 years before he passed away. So, while rare, it is possible to live an extended period of time with this diagnosis. Today, we have so many options, it is unacceptable to not offer the most aggressive, most timely treatment available, and to adjust it when necessary. If you have a doctor or medical system that won't try something, go somewhere else and don't wait for a "change" in their attitude. It may all come down to money, so clinical trials are certainly important to participate in. My Uncle, also had this diagnosis and lived, with an open mind and willingness to try any treatment, 13 years. Try to see beyond the discomfort, lack of energy, pain or depression. Try to visualize living a wonderful life day by day. Colette once wrote, "I wish I known I'd had a wonderful life." Fight for it, demand help and accept that miracles happen.