Your tolerance on Onivyde/Leucovorin/Fluorouacil?

Posted by Marsha @gmapri, Apr 11 9:06am

Diagnosed with Stage 4 PC in the tail with metastasis to the liver in December 2025. Did the Abraxane/Gemcitabine regimen for 3 months (which I tolerated well), and the latest CT shows little improvement. On April 22nd, I will start the Onivyde/Leucovorin/Fluorouracil pump. If you have or are going through this treatment, what side effects did you experience and how did you manage them?

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Side effects seem to be very different for different people judging from what I've learned. But the
Fluorouracil caused me to have severe mouth sores. I was down to chicken noodle soup, lost weight. The only thing that helped was something called here "magic mouthwash" here in NC. It has to be prescribed and must be made at a compounding pharmacy. Good luck.

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I believe this combo is commonly called Naliri. I have been on for short times twice.
Without the oxyplatin, it is more tolerable than folfurinox. I expected a little nausea once pump was off and pre-meds wore off. I ate small portions at a time and forced myself to eat. By day 4 I was pretty normal. But it is very true, our GI systems are all a bit different so we don’t all handle things the same way. I hope it is effective for you!

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My husband age 73 was incidentally diagnosed with adenocarcinoma tumour in tail/body in Nov. '25. with no symptoms. He has just completed 8 treatments of oxyplatin, irinotecan, Leucovorin/Fluorouracil (FU5). No metastasis or lymph nodes involved. He is just waiting for appointment for distal surgery for resection of pancreas and spleen with portal vein replacement within two weeks. Side effects were mild cold neuropathy in hands, face and throat, trembling hands for about 4 days after treatment and some fatigue. Has lost 4 lbs. Appetite remained good, no nausea (kept ahead of it with anti nausea prescription), slept well. No matter what the weather (-20 F some days...Canada!) he walked 3 -4 miles daily (except chemo day), rinsed mouth 10-12 times a day with baking soda/salt water solution. Hair thinning (pretty well bald). He was determined and fortunate...everyone's side effects are different.

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