Kris, my husband was diagnosed with cholangiocarcinoma on August 2 and is being treated at MD Anderson. It had metastasized to his sternum so in January they removed half his liver and most of his sternum, but his margins weren't clean. The gen/cis that he'd had success with before surgery didn't work after, and it spread to his lungs, hip, and spread in his remaining sternum and liver. Dr Javle put him on FOLFIRINOX but, after one treatment, a clinical trial came open that Dr J felt would be of better benefit. I posted this trial on the Clinical Studies part of these discussion boards; it is Phase II, Single Arm Study of BGJ398 in Patients With Advanced Cholangiocarcinoma. He will begin this on July 23.
He had been on Oxycotin & Oxycodone but they weren't doing the job, so yesterday they switched him to methadone w hydromorphone for breakthrough pain. He also was just put on Lyrica for pain remaining from the surgery. Granted, he just started these new meds, but after 24 hrs he doesn't feel any better.
The pain has really impacted his quality of life, of which he feels he has none. We'll continue working w the pain mgt docs at MDA, but I'm anxious to move forward with other methods too to help him feel better.