Changed from Folfox to folfiri -- Anyone?

pamalama

Hey everyone,
Sorry I haven't posted in a while it has been a hectic couple of months since Jerry started chemo. Anyway he's a stage 3b and was suppose to get 12 treatments 6 months folfox and then weekly (24) Erbitux well the update is his labs started to get a little kick from the oxi and on treatment 5 and 6 of folfox he had a severe grade 3 reaction to the oxi so they stopped it and never received number 6. He went back in yesterday for big chemo (we've been calling the weekly erbitux little chemo) and they told us no more oxi and we thought he would just be getting 5fu and erbitux no the doc said because the 5fu and erbitux alone is not what the doc feels is best. So then they said he would like to switch him to folfiri and will have 7 more treatments and hopefully be finished in the beginning of July. We were kind of shocked and he could have taken a couple of days to think about the change but we decided it's better to get started and keep on going. He received the campostar yesterday and is on the pump til tomorrow. What a difference compared to folfox that oxi was making him feel horrible. He hasn't experienced the nausea with folfiri and he's waiting to see of the diarrhea will happen as well. Anyone out there on folfiri I'd like to hear how the side effects are? He's very worried about losing the hair. The plus side of all of this is now he only will have chemo every 2 weeks instead of every week because no more erbitux. Thanks for letting me ramble and best of luck to everyone out there dealing with the beast.
Pam

emrose

My husband is starting folfiri
Hello

My husband has had 3 treatments of folfox and suffered horrible side effects. I actually just posted something very similar and it's on the next page I believe. I got some good responses so you should check it out. He won't start the folfiri until his next treatment so I can't give you and helpful info but I just wanted you to know that our oncologists think alike! I have some questions about the change that I'll be talking to the onc about but it seems like a very good option - more aggressive than the 5fu alone, but not quite as intense as the folfox. I'm not sure my husband believes the side effects will be better... He just plain hates chemo now, no matter what it is! But I'm glad to hear that jerry has seen a decrease in side effects.

Good luck!

lisa42

did it
Hi Pam,

I was on it, although it wasn't actually called Folfiri because I took Xeloda instead of 5FU (which is the oral pill form of 5FU). I had the Camptosar, Xeloda, and also Avastin.
The diarrhea from the Camptosar (with me, anyhow) would usually hit 2-3 days after getting it. I would sometimes be constipated for the first couple of days, then my stomach would start the rumbling and it'd be a process that day where it would turn from hard to diarrhea. It would last 2-3 days & it would not be all day long- morning and evenings were worst for me. It actually didn't happen every time to me- maybe a little more than half of the times.

I also took Folfox and nothing was ever as bad as the oxaliplatin. How I hated that oversensitivity to cold thing and the awful tingling neuropathy. Diarrhea isn't fun either, but I could bear that better than the oxi side effects. I'd get another funny side effect- I'd sneeze a lot the first day or two after getting Camptosar. I don't know if that's a usual side effect, but it definitely happened to me from the Camptosar.

So far as hair loss, it's different with different people. Mine did start to thin, but never went beyond thinning. Since my hair was pretty thick to begin with, I really don't think anyone else even could tell any difference. It's interesting that about halfway through, my hair stopped thinning. When I would wash my hair was when I used to notice it the most. It doesn't come out in my fingers at all now. I now have hairs a couple of inches long that are growing out through the rest of my hair.

Best wishes to your husband with this chemo change.

Blessings,
Lisa

Shayenne

lisa42 said:

did it
Hi Pam,

I was on it, although it wasn't actually called Folfiri because I took Xeloda instead of 5FU (which is the oral pill form of 5FU). I had the Camptosar, Xeloda, and also Avastin.
The diarrhea from the Camptosar (with me, anyhow) would usually hit 2-3 days after getting it. I would sometimes be constipated for the first couple of days, then my stomach would start the rumbling and it'd be a process that day where it would turn from hard to diarrhea. It would last 2-3 days & it would not be all day long- morning and evenings were worst for me. It actually didn't happen every time to me- maybe a little more than half of the times.

I also took Folfox and nothing was ever as bad as the oxaliplatin. How I hated that oversensitivity to cold thing and the awful tingling neuropathy. Diarrhea isn't fun either, but I could bear that better than the oxi side effects. I'd get another funny side effect- I'd sneeze a lot the first day or two after getting Camptosar. I don't know if that's a usual side effect, but it definitely happened to me from the Camptosar.

So far as hair loss, it's different with different people. Mine did start to thin, but never went beyond thinning. Since my hair was pretty thick to begin with, I really don't think anyone else even could tell any difference. It's interesting that about halfway through, my hair stopped thinning. When I would wash my hair was when I used to notice it the most. It doesn't come out in my fingers at all now. I now have hairs a couple of inches long that are growing out through the rest of my hair.

Best wishes to your husband with this chemo change.

Blessings,
Lisa

I'm on it...
I'm on Folfiri, and did experience horrible nausea the first treatment, the anti-nausea meds were not working for me, and since I said something about it, they did switch me to the Emend and Dexamethasone anti-meds, which was a godsend, no more nausea, and I was able to eat! I am going to be restarting my 4th treatment soon, (I just had colon surgery, so healing from that, before going back on chemo) and I have not had really horrible side effects except that nausea, and there is some hair thinning, but my onc said I wouldn't lose my hair, she doesn't like oxy, and so far, it's been good, since she said it's working, and my tumors are shrinking!

Hugsss!
~Donna

pamalama

Shayenne said:

I'm on it...
I'm on Folfiri, and did experience horrible nausea the first treatment, the anti-nausea meds were not working for me, and since I said something about it, they did switch me to the Emend and Dexamethasone anti-meds, which was a godsend, no more nausea, and I was able to eat! I am going to be restarting my 4th treatment soon, (I just had colon surgery, so healing from that, before going back on chemo) and I have not had really horrible side effects except that nausea, and there is some hair thinning, but my onc said I wouldn't lose my hair, she doesn't like oxy, and so far, it's been good, since she said it's working, and my tumors are shrinking!

Hugsss!
~Donna

Thanks everyone
Thank you everyone for your quick responses. He just left to go drop off his buddy(the lovely fanny pack). He's still waiting for the big D to arrive but otherwise feels really good. Lisa and Donna I told him the comments about the hair loss so I guess we'll have to wait and see. He's folicurely challenged (i.e. already balding and maybe a little bit overobsessed about his hair) and I told him he has a beautiful face and eyes and to stop worrying about it.

Donna I read the boards all the time and I hope your recovery is going well from surgery, we have 3 kids 11,9, and 4 I know you have 4 it's crazy but I'm am so grateful for the chaotic but wonderful distraction our children offer us through this journey I'm glad to hear the folfiri worked well for you. Best of luck in your recovery enjoy the spring time weather I hope has arrived in Ohio we are in florida and I hate to say it but the weather here, perfect.

Emrose let me know how your hubby does after he gets the first folfiri I'd love to know since I believe they are the same stage.Good luck with the pregnacy

Again thanks.
Pam

claud1951

pamalama said:

Thanks everyone
Thank you everyone for your quick responses. He just left to go drop off his buddy(the lovely fanny pack). He's still waiting for the big D to arrive but otherwise feels really good. Lisa and Donna I told him the comments about the hair loss so I guess we'll have to wait and see. He's folicurely challenged (i.e. already balding and maybe a little bit overobsessed about his hair) and I told him he has a beautiful face and eyes and to stop worrying about it.

Donna I read the boards all the time and I hope your recovery is going well from surgery, we have 3 kids 11,9, and 4 I know you have 4 it's crazy but I'm am so grateful for the chaotic but wonderful distraction our children offer us through this journey I'm glad to hear the folfiri worked well for you. Best of luck in your recovery enjoy the spring time weather I hope has arrived in Ohio we are in florida and I hate to say it but the weather here, perfect.

Emrose let me know how your hubby does after he gets the first folfiri I'd love to know since I believe they are the same stage.Good luck with the pregnacy

Again thanks.
Pam

Pam,
I went through a
Pam,

I went through a similar experience. Stage 3. Had 4 rounds of Oxil and Xeloda. Couldn't take it anymore (to many bad side affects) so went on camptasar and the 5FU pump for the rest of the 8 rounds.

That made a big difference to me. Much better. Actually, after each treatment of Camptasar I was constipated. Of course the fatique will always happen with any chemo. My counts did get low and I had nose bleeds but I handled that a lot better than the oxil & xeloda.

Yes, most of my hair did come out (they say it "thins" with Camptasar. It thinned to the point of buzzing it) but tell him that is his "badge of courage"! He'll love it when it comes back in.

It is now 1 1/2 years post chemo and I am still NED (no evidence of diesease)!

PS. While I was getting my treatments, I would have a reaction to the Camptasar. Tell them right away about it. Sweaty, runny nose, eyes, tummy gurgling, those are all signs of a reaction. They can give you something (I forget the name of it) that helps within 10 seconds.

Best of luck

Claudia

ruggersocks

Had both
Folfox and Folfiri. I was able to complete all of the Folfox treatments with some neuropathy, cold sensitivity. Otherwise fine.

Folfiri came when cancer returned. I really struggled with Folfiri more than Folfox. More diarrhea, lots of nausea to where I wasn't eating. They gave me a super-duper nausea pill...Emend...and that helped a lot. I also had a seizure on folfiri that they attributed to cancer-related stress.

With all that - I was able to finish all the treatments of Folfiri with a (can't remember exact number) 10% reduction and no 5fu push added at the end. Finished June 2007 and my recent scan this week showed I'm still NED!

Good luck!

Cheryl P.