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FOLFIRI - am I a freak again?

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Day #6 today and I'm very slow to rebound, with this being just the first cycle - yikes! But it really is easier than FOLFOX.

I have still not had any of the famous diarrhea. In fact, I've had constipation trouble. I had a little movement during infusion, and a little yesterday, but that is all.

Yesterday and today I've had very severe stomach pains. Today I started having lots and lots of gas. (I remember that happening a couple times on FOLFOX, but not every time.) Anyone else have gas trouble and constipation on FOLFIRI rather than diarrhea? What about the bad stomach pain? I am on Avastin too if that might make a difference?

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

I don't know the answer, but I sure hope you feel better soon.

*hugs*
Gail

Annabelle41415's picture
Annabelle41415
Posts: 4310
Joined: Feb 2009

Don't have a comparison but when doing the Folfox it was with an ostomy bag so usually it was just to the bathroom to empty but only once during infusion days. So sorry you have trouble with bathroom issues and pain. That can make any day a bummer. Hope things get better.

Kim

damama24
Posts: 175
Joined: Nov 2009

I am not on the full Folfiri regiment like you. I am getting the Iriontecan and Vectibix,and yes I sometimes have the stomach pain from the iriontecan. The crampy like pains started during my infusion today.I told nurses and was given meds to stop them and then took pain meds when I got home. Feel much better now. I too have more trouble with constipation than diarrhea. The first few rounds of this chemo they were giving me Atropine as a pre-med to prevent the stomach pains and to slow down the gut to prevent diarrhea. I asked that they stop the atropine after 4 rounds because it stopped me up terribly,tried cutting the dose in half the last 2 times I got it but still caused constipation. But I then have to deal with the stomach pains occasionally. Gas hasn't been a problem.
Like you this chemo has been much easier to handle than the FOLFOX for me too. And I don't miss that little pump for 46 hours either. My CEA continues to go down so I'm hoping this combo continues to work for me.
I have been following your posts and am praying that things go well for you. I have been at this for just over a year now and I know how frustrating things can get. Blessings to you and your family.
Deb

AnneCan
Posts: 3693
Joined: Oct 2009

I am on folfiri + avastin. I have had bad cramping, but only on infusion day. When this happens they stop the infusion, + give me an injection (sorry, I forget what it is) just under the skin in the stomach. The cramping stops very quickly. They have also increased my infusion time for leucovorin + irinotecan from 1.5 hr to 2hr + that seems to help. Take good care.

taraHK
Posts: 1961
Joined: Aug 2003

Hi Kathyrn,

It seems everyone has difference experiences - with bowels as well as other things! I have my infusion on Friday. I have constipation for three days then suddenly "loose stools" (I wouldn't say diarrhea -- but a sudden switch from constipated).

I don't have any stomach pain during or right after infusion. But I do several days later. Last time it was so bad I had to get some prescription medicine. My doctor calls that pain "colic". I have acute diarrhea every cycle but the day varies - - usually around day 7-9. Controllable with immodium.

I am also on Avastin -- I don't notice any side effects from that.

Good luck

Tara

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Kathryn,

Because Folfiri normally causes diahrrea, they always would put something (?) in my infusion so that I wouldn't get it and that, combined with the effects of the anti-nausea pills, would usually cause constipation until about three days after getting the chemo for me. That first one on about the 3rd day would be hard as a rock to pass, then it was as if the dam was broken- then the diarrhea would come for a few days, then slow down again to almost normal a few days before getting hit with it again.
So, be ready in case that's what happens to you.

Take care-
Lisa

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Interesting... I just read Tara's reply after I wrote and posted mine. I guess the three days of constipation and then it all letting loose after that isn't just me... nice to know someone else is like me and that I'm "normal" in some weird way. :)
The prescription medicine I got for the diahrrea then and also use now is Lomotil & it does definitely work better than the immodium.

Lisa

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Constipation is one of the side effects of avastin, in a few day stools will become
quite soft (not diarrhea but very soft), some times l got pain but punctually and is caused by the constipation, what i do is try to to evacuate stools with a supo! and everything
solved!
don get in panic this time you are in the 99% not in the 1%!

maglets's picture
maglets
Posts: 2418
Joined: Jun 2006

oh sorry you are having pain....haven't done your chemo but for sure severe stomach pain with oxy and xeloda both

good luck, hugs

mags

C Dixon
Posts: 202
Joined: Jan 2010

Folfiri was much easier for me. No extreme fatigue that I had on Folfox. I did not have diarrhea at all. My doc gave me atropine with the pre-meds to fend off the immediate diarrhea but I did not like how it made me feel so we cut it back to half and then nothing by cycle 4 and I still did not have diarrhea. Maybe I had loose stools later on but can't remember so it must have not been problematic. I also had them cut the Decadron in half because I was just a fish wife for the first 48 hours and couldn't sleep. I would get a little queasy because of that but never sick.

I did get the cramps a couple of time but not every cycle and the Levsin dealt with them nicely. Do you have some of that? My hair didn't start to thin until around the fourth cycle.

Catherine

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I hadn't heard of that. I'll have to check into it. I'm going to have to ask for something if this keeps up. I don't really have cramps - it isn't my intestines. It is just very severe stomach pain. The kind that drops me to my knees.

Day 7 and my nausea is at its worst. That makes no sense to me either. With FOLFOX the nausea got worse each day for a few days, and then it slowly got better. Now I start to feel a little better, and then get much worse. Back and forth. I've done a great job getting in lots of fluids and food. But I just weighed myself and I've lost 5 pounds. This could be the thyroid issue. I was having to eat way more than normal to keep my weight up. Right now I'm doing good on eating, but I can't eat more than normal.

I'm finally moving my bowels today. It has gotten much softer. Relief! The diarrhea may be on its way - time will tell.

A 5-minute shower did me in today. I'm wiped out. I really thought I'd be pretty good today. I've put off a lot of work, expecting to put in a full day today. Ha - not happening.

I HAVE to be better tomorrow. My daughter is getting her wisdom teeth out and needs sedation, so I need to drive. It is my turn to be Mom again, instead of having my kids taking care of me!

I really, really hate chemo. I sure hope this gets the three nodes under control and I can push for surgery. I just can't see living the rest of my life like this indefinitely on chemo. I do well with surgery. I don't do well with chemo - we don't get along.

Sundanceh's picture
Sundanceh
Posts: 4306
Joined: Jun 2009

It's an interesting ride to say the least, Kathryn!

Sure looks like it will be a one week on - one week off type of deal, which if my math is correct is 50% of the time.

I can't look down the road at 11 more of these or I'll go nuts. I'm due to start the next cycle next Wed, so I'm in a window now and still recovering from issues as well.

My plan is about to change today as the radiation will be moving forward very soon - so Folfiri will be stopped and I'll be doing 5-fu 24-hours a day for the next 6-weeks, talk about toxicity. If I live through that, Folfiri would then start back up.

As you found out with your condition and I have found out with my condition - things are much worse for me than originally painted. Made more difficult because the surgerey could not excise all of the tumor, as it was close to the spine,so we did not get clear margin.

Chemo is such a mentality to first do it - and then physically to be able to endure it. I'm hoping that you and I both will find the strength we need to overcome all of this.

You can cut me all day long. I'm starting to come to the belief that I'd rather do surgery than endure the treatments. With surgery, you go down, they do what they have to do and then you live with it for the rest of your life.

But with chemo, you know it's a bag of nuts and yet you have to voluntarily submit to it and then make yourself sick, so that you can try and get better. I just don't know sometimes.

Hang in there!

-Craig

WhatsA_Mom2Do's picture
WhatsA_Mom2Do
Posts: 46
Joined: Sep 2010

Hi Kathryn,

First off, no your not a freak. Chemo side effects are just plain wicked! My 19yo son is on FOLFIRI/Avastin for colon cancer mets to para aortic, retroperitoneal, iliac crest, and supraclavicular lymph nodes. Unfortunately, he is not a surgical candidate due to the widespread nature of the lymph node mets. He too had the SEVERE stomach pains you describe and issues with nausea and vomitting. His Onc and I have worked together (I'm an Onc nurse and used to work with my son's oncologist, so I get to boss him around a little) to tweak his meds and here's what helps him.

Cramping: Initially they were giving him extra atropine which made the constipation issues worse, hence, the stomach pain worse. In addition to helping with stomach cramps, atropine dries secretions as well. He now gets atropine at the beginning of the infusion and I had the onc order Bentyl for the pain. Also, they may need to slow your irinotecan infusion.

Nausea/Vomitting: He gets Aloxi, Dex, and Emend prior to infusion. He had also started taking an anti nausea med the night before, and morning of chemo. He also gets a 0.5mg dose of Ativan at the end of his FOLFIRI/Avastin infusion, just priot to getting hooked up the the 5FU pump. The day of disconnection from the 5FU pump, he gets an additional dose of Aloxi and some IVF if needed (he hasn't needed the IVF since the 2nd chemo infusion). He does not take the Emend on day 2 and 3 because he says "I can feel those little beads in my stomach". Hey, it's his stomach, who am I to judge. LOL

This worked great for him. Also, I started him on IP6 and AHCC (medicinal mushroom compound) and they have worked WONDERS on his side effects.

I hope that these suggestions will be of help to you. Oh, I almost forgot, he is now also on Carafate for the "acid" he complains of feeling all the time. This has worked wonders because, unlike Prilosec, nexium, etc...it actually coats the entire GI tract as it's going down. It's an old school one we used to use on our Bone Marrow Transplant patients.

All the best to you,

Dee

PS: I follow you on Colon Club to but I haven't joined as yet.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I have not this problems, l send you my solidarity and good vibes hope you feel better very soon!

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