So sick after first round of chemo: What can I do to help?

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.

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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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Oh he’s fully aware of what a hard time I’ve had with the first round. The nurse told him on both days that I was there for the hydration. Pretty certain the 5-FU rate was 100%. I’m 58. No one mentioned it being a lesser rate for any reason. I assume the dose goes by your weight more than anything. The nurse also did not mention lowering it even though they knew I had ended up in the ER to get IV hydration on Monday night and back at the cancer center to receive IV hydration twice more (Tuesday & Thursday), so 3 x total for IV hydration in one week due to so much nausea, vomiting & lack of appetite. If I am this ill again after this coming round, I will demand it to be lowered. I cannot tolerate feeling that sick for 2 weeks in a row. I’m very nervous about this coming round. 😔

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I find it necessary to be a determined self advocate. I let my oncologist know if I had to continue the initial chemo I would rather not be treated and just die. He was very understanding and we did work out a change. I got another 10 rounds of chemo and managed very well.

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He tested my blood to see if I’m overly sensitive to the drugs. He is ruling out reasons why I was so sick after the first round. He said if I am as sick this time they can lower the dose. They are trying Emend prior to my infusion today.

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I'm glad you posted. I have been thinking about you today and wondering how things went with chemo. I hope the Emend helps; it does me. And I hope the side effects are less this time. Please keep us posted.

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No nausea but am still getting the infusion. So far I broke out in a rash on my forehead today from the Oxaliplatin. 🙁

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How are you doing today? I hope the Emend has helped and that you're experiencing some rest and relief after the last couple of weeks and yesterday's chemo. When you feel like it, please let us know.

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