My husband was on folfirinox first... every other week with pump for 6 months. Then reduced to a maintenance dose for a few months. But, CA19-9 started to go up, and new spots seen in the scans. Switched to G/A a few months ago... once/week for 3 weeks then one week off. Not as harsh for him as the folfirinox but still often could also be described like markymark as a fatigue ridden couch potato. He's at the end of his week off right now and has a little more energy.
He lost weight on folfirinox... those last few months of it were really rough on him. Regained the weight when on the maintenance dose. Now has put on more weight... I guess from me bugging him to eat, plus he's just not burning any calories when couch surfing.
Latest CA19-9 numbers down in the 300s which sounds high unless you compare them to the 39,000 + of 15 months ago. I'm hoping if numbers continue to come down, and scans look good that he can get to an every other week treatment schedule so he can regain something a little more similar to how he used to live. I don't think he will get back to backpacking and whitewater kayaking... but maybe some short skis or short hikes or kayaking on a lake would be nice. I'm dreaming at this point.... just hoping he can do something outdoors again at some point as it has been a frustrating journey for him. He walked the mile to get the mail with me today and that is something! He was a strong, healthy, very active 69 year old when this was diagnosed and I think that helped with the battles he's endured so far.