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Folfox side effects very difficult, ideas to manage?
Neuroendocrine Tumors (NETs) | Last Active: Mar 19 12:27pm | Replies (7)Comment receiving replies
Hi, I am a caregiver for someone with grade 3 well- differentiated pNET metastatic to liver diagnosed June 2025. First treatment was Folfox 12 rounds and a 13th round of just Fluorouracil (neuropathy began in fingers and toes from Oxaliplatin otherwise it was pretty well tolerated). Latest MRI, CT and PET scans all showed significant improvement in tumor size and little metabolic activity. 7 weeks off chemo. Next treatment to try to keep things stable was Capecitabine 3000mg per day for 14 days. Side effects started around day 10 but increased day 12 with no relief (4 days post treatment). While I would classify as level 2 toxicity (moderate) they are still pretty bad. Mouth sores, hand foot sores and pain (this is a little better), nausea/vomiting, diarrhea, loss of appetite. Lost 8-9 lbs in 6 days.
If anyone is taking this medication, Can you advise when symptoms decrease, what your diagnosis is and the dosage. Also any other chemos that you tried and work? I do not think they are functional NETs so no hormone related issues.
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@briana311
One thing I did when I was taking cap/tem who’s work with my primary care doctor. She prescribed a variety of anti-acid meds to be used alongside anti-nausea pills. I start with Protonix and then take a Pepcid midday, followed by a Prevacid if needed.
I had ended up in the ER the second round because it’s the severe pain. They gave me Protonix in the hospital which helped. However, oncologist, said Protonix may interfere with capcetibin.
Primary care doctor also talk to me about foods that might make it easier. She suggested soft food in multiple small meals during the day and to avoid citrus and dairy. And of course to avoid anything spicy. I have not had as many GI issues with the infusion of folfox. Some nausea, Managed with meds and lack of appetite. New paragraph apologies for typos. My fingers are not working well.