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Began folfirinox treatment - have a few questions

Pancreatic Cancer | Last Active: Oct 27, 2023 | Replies (54)

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@jk77

Hi, @lisn. I had 8 rounds of Folfirinox, from April thru August of this year with an unintended three-week gap in late May-early June. Although everyone's experience is different, I'm sharing mine in case it's of use.

-- I too needed atropine with irinotecan; without atropine, I had stomach distress and bowel urgency. I didn't have any ill effects from the atropine.
-- Irin. also made me develop post-nasal drip for a few hours; it made my eyelids twitch during the infusion; and after a few infusions, irin. also caused short-term, intermittent spasming of my hands (a few ours to a couple of days).

-- My fatigue "schedule" was:
......... Felt worn out on Day 1 (infusion day).
......... Felt reasonably OK on Days 2 and 3 *but* didn't get much done because I was attached to the pump for all of 2 and part of 3.
......... Felt pretty good on Day 4.
......... Felt awful on Days 5 and 6: fatigue, nausea, no appetite, diarrhea. @markymarkfl, who is very helpful and knowledgeable, suggested that taking a steroid on Days 1, 2, and 3 could be the reason for this pattern. Days 5 and 6 were always my worst.
......... Felt a bit better on Day 7 and a bit better still on Day 8. During the 1st few infusions, I felt good on Days 9-14 and was productive.

****** Please note ***** that chemo is cumulative, meaning that the side effects could become more intense with each infusion (mine did) and that the number of bad days could increase with each infusion (mine did -- with my final two infusions, I had zero good days, although I wasn't _miserable_ for all 14). That said, I'm very glad that I took Folfirinox (my CA19-9 dropped a lot), and I'd take it again if necessary.

Good luck and best wishes.

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Replies to "Hi, @lisn. I had 8 rounds of Folfirinox, from April thru August of this year with..."

This is very helpful, thank you.
I agree, @markymarkfl has been extremely helpful, thank you @markymarkfl !

The goal was for my husband to take steroids on days 2 and 3, but he ended up feeling worse with the steroids so he's not taking them. Unfortunately, he's extremely sensitive to most medications, which makes things very challenging. Both his oncologist and nurse practitioner are aware of the sensitivities and side effects issues that he has.

We're noticing the cumulative effects intensifying. He gets a fever after each treatment and is not having any real good days. He gets a window of about a couple of hours on days 12 &13 before it all starts again on day 14, so that's daunting.

He's having the same issues as you have with the Irinotecan - the twitching eyelids, post nasal drip. He's also having muscle twitching in his legs and difficulty with focusing his eyes during that infusion.

How are you doing now that you're finished with your treatment? I hope that you're doing well.