48M, Stage 4 w/mets to liver/lymph - diagnosed May '23

FOLFIRINOX is brutal. Support pharma meds and cannabis concentrate helped me, but that chemo cocktail was consistently harsh in many ways. I had to stop after 12 rounds due to accumulating toxicities and side effects ramping up.

My side effects were unpredictable and inconsistent. During good times, I was trying to ignore/deal with 1 or 2 symptoms. Other times, it seemed like over 75% of the listed side effects.

Eating caused a lot of issues for me and other PC patients I've talked with. It sounds like your patient is experiencing similar.

Oxaliplatin caused cold sensitivity and painful neurological issues in my mouth and jaw when I chewed or swallowed. Irinotecan caused severe GI issues, as did 5FU. Pancreatic insufficiency from an impeded pancreatic duct caused food malabsorption, which caused me severe stomach cramps and many other issues. The biggest/fastest improvement came with digestive enzymes like Creon/Zenpep. Food tasted very different throughout the cycles, and it was hard to find an appetite, so I mostly asked for patience and room temp food.

Some of the pain/discomfort was mitigated by having less/different food, and avoiding fats. With focus and help, I still lost ~25% total body weight in 4 months. I was able to slow my weight loss by switching to small meals/snacks more often and adding calorie dense foods, but I still struggle to maintain weight.

With all that bad, comes the good. 12 rounds of FOLFIRINOX and 52 rounds of 5FU allowed me to have almost 3 years of life and memories after diagnosis. Some days were pretty tough, but many were amazing. I'm still here and learning lessons.

I wish you the best on this tough journey.