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@frygirl777

I had my first 5-FU round on Tuesday, May 16, 2023. In my pre-infusion IV, I received Atropine to prevent diarrhea, Kytril for nausea & steroids to halt the nausea & vomiting. My nausea & vomiting didn’t hit until Saturday, May 20 and did it hit hard! Zofran & Compazine (which I was given to take home) did nothing for my nausea & vomiting. I ended up in the ER and was given IV hydration plus Reglan. Reglan did nothing for me either except make me drowsy being that it has to be taken with Benadryl. I have now been prescribed Olanzapine which I am going to try. It’s my rest week & I am just a few days away from my second round. I finally was able to eat a little last night. I’m hungry as heck but because I’ve hardly eaten in 2 weeks, I’m feeling weak. Labs are fairly normal other than slightly lowered RBCs & slightly elevated WBCs. Been back to the cancer center for IV hydration 3 additional times since the infusion, due to the nausea, vomiting & loss of appetite. Was given more steroids to control the nausea & vomiting. My oncology nurse, with 30 yrs experience told me ‘most people don’t get so sick from this treatment regimen!’ Guess I’m just lucky (not) or very sensitive to pharmaceuticals or my body is saying FU to the 5-FU? I am not at all looking forward to the next round. I was nervous for round 1 and my anxiety is much greater now for round 2!

The nurse told me that they will add Emend to my pre infusion IV cocktail next time. Has anyone else had this much illness from their 5-FU (plus Oxaliplatin, Leucovorin & Irinotecan) chemo? If so, please share what has helped you? My oncologist has not mentioned lessening the dose. Thanks in advance!

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Replies to "I had my first 5-FU round on Tuesday, May 16, 2023. In my pre-infusion IV, I..."

Emend does help me, so I hope that's a good addition for you. What is your chemo dosage level? As I posted above (or somewnere–I forget!), I did round 1 at 80 percent of the standard dosage for modified Folfirinox. The oncologist was going to do the full dose, but realized that I'm older than I present (I'm 70 but seem younger), so he reduced round 1 to 80 percent. I had horrible side effects, so rounds 2 and 3 were reduced to 60 percent of standard. That has worked much better for me. I have not had nausea or vomiting, although occasionally I feel a little "touchy" in my stomach. I've been able to eat and drink. I have not had diarrhea. I haven't needed additional fluids either.

As I also posted somewhere, my oncology nurse practitioner said very, very few people (her words) can tolerate the full dosage of modified Folfirinox–it's an extremely tough regimen that was tested on people who are much, much younger than I am. Before the nurses ordered the meds for round 2, they called my oncologist for a quick consult. I told him everything I'd suffered, and he reduced the dosage from 80 percent to 60 percent of standard. So, if you were me, now knowing what I know after 3 rounds, I would tell my oncologist everything I've suffered over this round and ask whether a reduced dosage level could be more beneficial. I mean, if you can't tolerate the treatment, what good is it doing you? I wish you all the best, and I hope you feel better today! We are all on such a challenging journey.

Had a strange reaction to irinotecan, felt entirely weak, couldn't function, no nausea or vomiting but my blood pressure was unusually low. I live alone and called an ambulance for myself. Felt lousy for almost two weeks and wasn't sure I could take another dose so my oncologist and I worked out a change. I told him I would rather die than go through the experience again. Because of the BRCA1, I wanted to continue with oxyplatinum, so I got 5-FU and oxy. The Aloxi and Emend premeds have controlled nausea, just feel slightly off at the end of the infusion and Compazine has worked well for you. I have gone from borderline resectible to resectible. Surgery scheduled for June 21st after having 11 cycles of oxy and 5-FU. When the oxy gave me an alleric reaction, my next treatment was 5-FU alone, I asked to continue with the Emend. Hope your oncologist will work with you on getting your symptoms controlled.