Began folfirinox treatment - have a few questions

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.

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.

Thanks for your reply.
Unfortunately, he's unable to continue with the Zofran due to the side effects (he was having breathing difficulties in addition to some of the other side effects). The nurse practitioner prescribed Ativan. He didn't start that yet since he's concerned about the side effects. Both the oncologist and the nurse practitioner are aware that he's extremely sensitive to most medications. Right now, he's of the mindset of dealing with the nausea which he's used to vs the risk of taking a new medication and what unknown side effects he might have. We're hoping that the vestibular issues he's still having from the vertigo attack resolve soon because on top of the nausea, he's still having motion sickness when turning over and when getting out of bed.

I'm so sorry that your hub is having such strong reactions to this regimen. Might it be worthwhile to ask for a break of one or two weeks before the next infusion? (I don't know whether his onc. would consider that OK or ill-advised.)

With regard to how I feel now, at an almost-three-month remove from my final (8th) infusion: I'm not thrilled about what seems to be peripheral neuropathy in my fingertips and toes, but if that's the price I have to pay for being better, then it's definitely worth it, even if the p.n. is permanent. (I don't yet know whether I'm better. I had my Whipple on 10-5-23, and it looks like radiation and more chemo are in my future; I'll know more after 11-9-23, when I next see my onc.)

If I have to resume Folfirinox and if the side effects are more intense and longer-lasting, I'll still consider it worthwhile *if* that gives me more time. (I'm 61 and bc there's longevity on both sides of my family, pre-diagnosis I naively/stupidly hadn't considered that I wouldn't see 85 or 75 or even 65).

One thing I forgot to note: On Day 5 of my final infusion (with Days 5 and 6 always being my worst), I experienced what seems to have been vasovagal syncope (I blacked out once when I got out of bed to use the bathroom). Dehydration was either the cause or *a* cause, so you're very smart to make sure that your hub is getting IV fluids when the pump is de-accessed.

Also, I remember feeling so bad in the aftermath of the final infusion that I thought, "I can't go through this anymore -- it's too much." But the side effects *do* end and people *do* return to more or less normal; it can be hard to have that perspective while feeling awful, and it sounds as though your hub is feeling deeply awful. I wonder whether pancan.org or the NPF might have resources about how people cope with extreme side effects -- ?

I fervently hope that your hub has good results in the long run; it pains me that this has been so hard for him (and for you), and I wish you both well.