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Began folfirinox treatment - have a few questions
Pancreatic Cancer | Last Active: Oct 27, 2023 | Replies (54)Comment receiving replies
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.
Replies to "This is very helpful, thank you. I agree, @markymarkfl has been extremely helpful, thank you @markymarkfl..."
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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.