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.
We actually asked about whether or not he could get a break since one of his treatments would fall on the day before Thanksgiving. The doctor said that wouldn't be a problem. We're SO looking forward to that to see how he feels with a bit of a break!
I've read that people are still suffering the effects after treatment ends, I hope you get some relief soon. The Whipple is such a major surgery, and you're only 3 weeks out from it, how are you doing?
Thank you for the pep talk about the treatments. I've shared that with him and we're very grateful, because yes, when he's feeling awful, it does become overwhelming. I will definitely reach out to pancan.org, I never thought of that. I truly get so much helpful information from this forum, it's amazing.
I'll keep you in my thoughts for your recovery, meeting with your doctor, and next steps.