FOLFIRI: The good, the bad, and the ugly truths

[Mohrfamily]

We are prepping for FOLFIRI and our oncologist is still fighting the insurance company to add vectibix. Tell me everything, if you made a switch from FOLFOX what was different? What helped you get through the side effects you had, what side effects you had. I'm going to miss the patient education this week.

[AlexandraZ]

For my boyfriend, FOLFIRI was rougher. But of course it's different from person to person. On FOLFIRI he had bad nausea and severe malaise. On FOLFOX he felt bad too, but never quite as intensely as he did on FOLFIRI. However, he got sick with the flu and various fevers while on FOLFOX, and that never happened on FOLFIRI. Best wishes to you two! FOLFIRI worked great on my boyfriend and shrank his mets by 40-60%. FOLFOX only kept them stable. Of course that may have something to do with the fact that second line chemo apparently is rarely as effective as first line chemo. But again, it seems to vary widely from person to person.

[Rock_Robster]

We are prepping for FOLFIRI and our oncologist is still fighting the insurance company to add vectibix. Tell me everything, if you made a switch from FOLFOX what was different? What helped you get through the side effects you had, what side effects you had. I'm going to miss the patient education this week.

Hi Mohrfamily,

I found FOLFIRI easier than FOLFOX. I didn’t miss the nerve damage and cold sensitivity at all, and the nausea was less. My digestion found it a bit tougher and I had some mild diarrhea (easily controlled with Imodium), and I think I was more fatigued (but that could also be because it was later in my treatment). I also found the atropine they gave with it made me feel weird, but that was fairly short-lasting. Stay hydrated on this one - extra fluids is never a bad idea. My neutrophils took a beating so I started on Neulasta too (with its own fun side effects, but it definitely worked!).

Good luck,
Rob

[JJH]

Side Effects Management under FOLFIRI
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44803&p=322527#p322527

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/folfiri

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/folfiri/side-effects

[claudine]

Xelox gave my husband permanent neuropathy in his feet, exhausted him, and did not work at all.
Folfiri : after 18 cycles they were getting a bit rougher than at the beginning, but nothing by comparison, AND THEY WORKED. Main side effects were hair loss (he never got bald though, his hair and beard just thinned a lot); a little nosebleed but not bad; damage to the mucous membrane of his mouth so he could not eat spicy food ; a little nausea the day after disconnecting the 46-hour chemo pump, but not bad.
Overall it was much easier for him than Xelox. I hope it’s the same for your husband!

[Mohrfamily]

Thanks for the feedback so far. DH is eager(as one can be in this situation) to get started. Side effects aside he's in to beat it!

[AlexandraZ]

Thanks for the feedback so far. DH is eager(as one can be in this situation) to get started. Side effects aside he's in to beat it!

That's great! You can do it!

I agree with Rob about the fluids. Jesper drank about 4 liters a day while on FOLFIRI, he was drinking all the time.

Jesper never had trouble with his white blood counts or platelets on FOLFIRI, but that could also be because it was the first chemo he got.

[JJH]

... He just switched hospitals for treatment and it's much closer now ...

Is this the hospital where DH is being treated now, or is it a different one?

https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-wexner-medical-center-6411100/cancer

https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-wexner-medical-center-6411100/colon-cancer-surgery

[Mohrfamily]

... He just switched hospitals for treatment and it's much closer now ...

Is this the hospital where DH is being treated now, or is it a different one?

https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-wexner-medical-center-6411100/cancer

https://health.usnews.com/best-hospitals/area/oh/ohio-state-university-wexner-medical-center-6411100/colon-cancer-surgery

That is who we just left. The infusion staff are terrible no regard for my hubby. A rise in marker numbers being viewed by someone but no one reached out to tell us sooner to do SOMETHING more.