Folfirinox minus Irinotecan

[Marieb]

Hi all

Wondering if anyone has any experience of getting Folfirinox minus Irinotecan.

Since the beginning of my chemo (have had 5 2 week cycles) I have had issues which my Oncologist is confident are adverse reactions to Irinotecan. These start in the clinic when they administer it present themselves as flu like systems (on one occasion), D&V and incredibly painful stomach spasms, nausea etc. They tried flowing down the administration from a half hour to 1 hour with multiple Atripine injections both in the clinic and as back up when going home .

As I am tolerating the other drugs well they have decided that the best course of action is to remove this drug from the mix. This happened for the first time on cycle 4 with immediate benefit. I went from all the issues above plus terrible fatigue to being out and about on day 2 with only minor manageable side effects. I have lost 5 stone in 8 months but now my weight is stable.

My question is this...has anyone else had this drug dropped from the mix and if so what was the impact in terms of fighting the cancer. My a oncologist feels that it won't make a big difference and balanced with quality of life it's the way to go. I am hoping she is right but obviously want to be throwing everything at this.

Any experiences you have to share will be gratefully received.

Marie X