I had eight rounds of folfirinox and my tumor did shrink about 35%, but it was still completely wrapped around two major vessels and unlikely to pull away enough to allow surgery. Since the chemo itself just about killed me I decided to stop and just live as well as I can for as long as I can. It's been five months since I stopped chemo and I have felt so much better! I'm enjoying my life and although I know it won't last I'm going to live it for all I'm worthwhile it does. The one thing that causes me problems is the gas and bloating. Dilaudid and morphine have not helped with that pain because I think it's actually nerve pain from the pressure of the gas. Opiates don't work that well on nerve pain. Cutting back on the Creon seems to have helped maybe a little and a higher dose chewable simethicone seems to work better than the capsules. I have tried taking a half milligram of lorazepam at bedtime and that seems to help a little. It doesn't even seem to matter what it is I am eating. Most of the time it's only a problem when I lie down to sleep because during the day when I'm upright I can usually pass the gas one way or the other fairly effectively so far. It's when I lie down at night that it's a problem. A hot rice sack seems to help although it could be that it just feels comforting . I also just started taking some dexamethasone in the mornings to see if that anti-inflammatory property will help. If anyone else has any more suggestions I would sure love to hear them. I'm going to try adding Beano and Lactaid and see if that helps.

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