The Colon Club

So I've been on folfox from July of last year (dx was in June) until Thanksgiving - it was doing a kickass job of killing the cancer but it was giving me really bad neuropathy so the doctor took me off of it at around Thanksgiving in hopes that the neuropathy would go away - but it's only gotten worse. I have very little sense of touch in my hands anymore and the same in my feet, with numbness all the way up to my knees and sometimes higher.

The doc said that when I go back on, it will be FOLFIRI instead of FOLFOX. From what I understand the main issues are 1) Diarrhea 2) Hair loss 3) Diarrhea 4) Major white blood cell loss 5) Diarrhea.

Is that pretty much accurate? How bad is the diarrhea, really? I am still working full time - will I have to stop? (I work in an office) I just want to know what to expect, from people who have been there!

Thanks!'
--Stardust

Stardust,
Of course everyone reacts differently. Butt, I have found folfiri to be easier than Folfox. Less fatigue, no neuropathy and no cold sensitivity!
Of course, there is diarrhea. Butt, there's also anti-diarrhea meds. Some folks, by the sounds of it, take 10 pills a day. I typically take 3-5 pills per two weeks. The beginning was worse for me, then I got into the pattern of when I needed which med.
My biggest warning on folfiri - NEVER trust a fart and carry extra underwear.

Gosh I don't know what to say. But I am still on Folfox and I have terrible diahorea. To the point I take sometimes 6 tablets a day. I hope if they have to swap me that Folfiri will give me back my feelings in my hands and feet and stop the running to the toilet.

I feel for you.

I lost my hair, but didn't have the diarrhea, which could have been due to taking oxycodone tho as pain killers are known to cause constipation.

It's different for everyone. My husband did have diarrhea while on FOLFIRI, but it was conpletely manageable with Immodium.
He had some hair thinning, but not very noticeable.

I'm on round 5 with Folfiri (after 12 rounds of Folfox last year) -I found the fatigue MUCH worse with Folfiri (I was actually able to work during the infusion on Folfox after awhile), now wiped out for days, diarrhea seems to be 5-6 days post treatment and then not a big issue because I've been to sick to eat-I have noticed some different neuropathy -not the numbness and tingling which had resolved to a tolerable level ,just sense of numbness but it has gone away after treatment and was sporadic at best-like everyone keeps saying -to each his own

mike

I feel much better on the furi than the fox. I have to take 5 to ten imodium a day on maybe 4 days per cycle, but it mostly affects me at night do hasn't been too bad at work.
My hair is gone and that's just fine. I don't really miss it and can easily forget that it's gone. The fatigue is minimal, and nausea has not been too bad either. Really, infusion day is the only real bad day. I usually feel crapptastic on infusion day, but wake up better the following morning. I suggest asking for atropine during infusion to help with the flushing and cramps.

KElizabeth wrote:I suggest asking for atropine during infusion to help with the flushing and cramps.

Atropine is good for diarrhea also. I did it with first one but got constipated so had to stop.

My husband has 3 more rounds of FOLFIRI left. His hair is thinning up top and instead of diarrhea, he is troubled by hard stools, sometimes constipation. He takes miralax to get ahead of it. Besides that, he is tolerating FOLFIRI much better than he tolerated FOLFOX. Hardly any fatigue except for a couple of days after infusion.

Folfiri is considered better by Dr kemeny for lung things. Although she considers oxali more aggressive med for CRC altogether.
I receive atropine and have to battle constipation rather lately than run to the can.
Good luck!

I would seriously question abandoning Oxaliplatin.
If you already have neuropathy it is unlikely to improve much.
If the experience of my SO is anything to go by, the neuropathy may plateau. She has now had 18 rounds of Oxi.She had bad reactions after the 14th and 15th rounds but the last 3 rounds have been under a de-sensitization programs and have gone well. I have encountered no other people who have had so much Oxi as she has. Our oncologist ( he is my old oncologist as well), is very reluctant to give up on Oxi because it works. Tumours and CEA stable.

Hubby has had 4 rounds of FOLFIRI (after 7 rounds of FOLFOX) and he only really had one bad bout of the runs the first time. He does get Atropine right before they give him the irinotecan. I have noticed his hair thinning a little. Luckily he has always had a thick head of hair, so it is less noticeable to most. He had the neuropathy go away after stopping FOLFOX, but it has come back. Not cold sensitive, but numbness in his finger tips and the soles of his feet.