Folfiri tips

rrob

I'm starting Folfiri with Avastin on Wednesday to treat my remaining lung mets and the three minuscule bone mets that just showed up on my last PET. Any tips? I'm going to try to keep working? Is that a possibility with this treatment? Thanks for giving me some idea of what to expect.

Rebecca

th_in_canada

folfiri
Everyone seems to react differently. I had Folfox + Avastin and had to drop the Avastin due to serious and rare side effects. When I went on irinotecan alone, I lost my hair. I got fatigue on all the treatments so I couldn't work but I know many on this forum do work. People almost always say that Folfiri is easier than Folfox.
Sorry I can't be more helpful.

Tricia

taraHK

my experience
Everyone reacts differently. For me, it was not bad. (I did with Avastin). I had mild nauseau, mild fatigue from the Folfiri. No side effects from the Avastin. I did have hair loss from irinotecan (boo hoo) -- kicked in quite late. My hair did grow back. I was able to keep working but I have a flexible job -- can work from home some. I had a nap every day (still do!). Good luck!!

Tara

Buckwirth

Personally;
Irinotecan takes me out completely for about two days, but it does not affect everyone this way, so you may do much better.

Does your company have a LTD plan? I just "retired" using mine, and consider it one of the best decisions I've ever made.

plh4gail

I was a little opposite. I
I was a little opposite from some of the others. I had folfox for the first 3 months then was switched to folfiri. The folfiri made me feel much worse in different ways than the nasty neuropathy of folfox. I was very weak, tired and nausea most of the two weeks, then it was time for the next dose. I was always pale after infusions, and the diarrhea was terrible. Hair loss was a little hard to handle, but it's growing back. And differently. I was not able to work while on treatment. Mainly because I just couldn't do it. I slept most of the time, like the first 4 days. Good luck to you.

plh4gail

janie1

plh4gail said:

I was a little opposite. I
I was a little opposite from some of the others. I had folfox for the first 3 months then was switched to folfiri. The folfiri made me feel much worse in different ways than the nasty neuropathy of folfox. I was very weak, tired and nausea most of the two weeks, then it was time for the next dose. I was always pale after infusions, and the diarrhea was terrible. Hair loss was a little hard to handle, but it's growing back. And differently. I was not able to work while on treatment. Mainly because I just couldn't do it. I slept most of the time, like the first 4 days. Good luck to you.

plh4gail

Hi Rebecca
Looks like we are all different. I didn't have much trouble at all. It may have to do a lot with the pre-meds. I started out thinking that diarrhea was going to be a big problem and even that subsided after the second treatment. One thing that may have helped in general was that I walked 5 miles many days. Out of 14 days, I did that about 8 days. I didn't lose my hair, but I also used 2 products to keep it very soft or it would have broken off. I don't know how chemo gets to the shaft of hair, since it is dead anyway, but it does...crazy stuff. Anyway, hair is the least important. Hope you do well and can work some.

Sundanceh

I've done Folfox and Folfiri - by far, the Folfiri was the worst drug that I have ever taken and I had a horrible time with it. I was different than most folks (no suprise there) and I was sick about 24 out of 30 days of the month with it.

With Folfox, I got sick for only about 4 days, but had to contend with the neuropathy issues and that drug compromised my immunity system, do we had to discontinue.

But Folfiri sucked the life out of me - it was no life at all. I did it because it looked like we could get back to another watch and wait state, so I went for it. My last dose, I knew that my mind and body had taken enough - at least for awhile. I cannot stay on this type of drug indefinitely.

Slept and napped a bunch. Extremem fatigue, some nausea, d was not too bad for me. It was just very harsh on me. And of course, I had done 2 cycles to start off - then we stopped to do 30x rad treatments with 5fu pump for six-weeks - and then we started Folfiri right back up.

So, I was pretty whupped from the radiation and then I had to absorb the chemo, so that might have made it worse for me, don't know.

I actually was able to work on Folfox, missed a couple of days each cycle.

This last time, I returned while still in chemo treatment. I was so sick, I could barely make the day and the drive home. I subsequently had to go back out to finish off the remaining treatments and then come back to work.

So, I can't say if you will be able to work - other than to say YOU WILL KNOW once you've done it.

I did Avastin took for about 9-months and am one of the few that developed a little heart murmur or "catching your breath" or "trying to put your heart back into rhythm" from that treatment - though the docs disagree that anything could have happened.

Best of luck with the treatments.

-Craig

laurettas

Hi Rebecca
My husband did three months of FOXFOX and then three months of FOLFIRI. He is retired so I can't say for sure, but I think he could have worked at a not too physical job during all of his treatments. He does stuff on our little farm most days. Almost never is he too ill to go outside and do things. That being said, people react very differently to the drugs. He has had no diarrhea with any of them so he doesn't have to try to counteract the loss of energy from that.

Good luck with your new treatment and hope it gets rid of those last pesky mets!!

swimmer22

laurettas said:

Hi Rebecca
My husband did three months of FOXFOX and then three months of FOLFIRI. He is retired so I can't say for sure, but I think he could have worked at a not too physical job during all of his treatments. He does stuff on our little farm most days. Almost never is he too ill to go outside and do things. That being said, people react very differently to the drugs. He has had no diarrhea with any of them so he doesn't have to try to counteract the loss of energy from that.

Good luck with your new treatment and hope it gets rid of those last pesky mets!!

It's not too bad
I have done both, previously 6 treatments of Folfox and current finished my 3rd treatment of Folfiri (7 more to go). I'd take the Folfiri any day over folfox. I feel about the same overall; however, I do not have to deal with the cold sensations of the Oxi in Folfox, plus my taste buds were more messed up on Folfox.

With Folfiri, I do experience tiredness. I typically get my treatment Wednesday morning and it takes about 3-4 hours. I then come home with a portable take-home treatment that I wear for an additional 46 hours. I get disconnected from that on Friday around noon. The day of disconnect and the following 24 hours is my worst with regard to fatigue. I also experience some nausea but have never thrown up. I do have a problem with getting a mouth ulcer every treatment that comes on day 5 and lasts for about 3 days.

I work full-time (did through both treatments) although I do have an office job overseeing a staff of 7 professionals. If I had a physical job, I would most definitely need a few days off during the treatment cycle. Best of luck to you.

smokeyjoe

swimmer22 said:

It's not too bad
I have done both, previously 6 treatments of Folfox and current finished my 3rd treatment of Folfiri (7 more to go). I'd take the Folfiri any day over folfox. I feel about the same overall; however, I do not have to deal with the cold sensations of the Oxi in Folfox, plus my taste buds were more messed up on Folfox.

With Folfiri, I do experience tiredness. I typically get my treatment Wednesday morning and it takes about 3-4 hours. I then come home with a portable take-home treatment that I wear for an additional 46 hours. I get disconnected from that on Friday around noon. The day of disconnect and the following 24 hours is my worst with regard to fatigue. I also experience some nausea but have never thrown up. I do have a problem with getting a mouth ulcer every treatment that comes on day 5 and lasts for about 3 days.

I work full-time (did through both treatments) although I do have an office job overseeing a staff of 7 professionals. If I had a physical job, I would most definitely need a few days off during the treatment cycle. Best of luck to you.

Hi, you say to treat your
Hi, you say to treat your remaining lung mets. Have they been there all along?? Did you have other mets that have been treated and have resolved on other chemo treatments. I have only had Folfiri, some fatigue, and some tummy issues, but have been able to work through it all. Currenly on a chemo. break, which has been LOVELY.

rrob

smokeyjoe said:

Hi, you say to treat your
Hi, you say to treat your remaining lung mets. Have they been there all along?? Did you have other mets that have been treated and have resolved on other chemo treatments. I have only had Folfiri, some fatigue, and some tummy issues, but have been able to work through it all. Currenly on a chemo. break, which has been LOVELY.

Thanks!
Thanks for all the info. I'll let you know later this week how it goes. I work for a great company that's been very supportive so we'll see how it goes. I do have disability coverage but I'm not sure I can cover my living expenses. I'm going to try to sell my house and tighten my budget. I was dx'd in 2007 stage 4 w/mets to my ovaries, had surgery, did 6 months of Folfox w/avastin and was NED for a little over a year. I had some small mets pop up in my lungs that we watched. Did a little Chemo and 3 microwave ablations that got rid of 5 lung mets. My cea has been climbing and is around 8.1 and my last PET showed 3 tiny possible bone mets and slight growth in one of the lung mets. So Folfiri with Avastin starts Wednesday. I'll let you know how it goes. Thanks again. You guys are the best!

Rebecca

here4lfe

No tips really
Just coping. My wife finally got a wig (hair thinning), and her wig maker was so good I hardly knew it! Also, skin peeling on hands and feet(lotions), nausea and fatique. Her fatique is much worse on irinotecan than on the FOLFOX. Also she gets a Neulasta shot, which makes her bones ache. And the weird thing is the ache moves around from treatment to treatment. She is managing to work, and inspires me to get my lazy butt up.

Best

rrob

here4lfe said:

No tips really
Just coping. My wife finally got a wig (hair thinning), and her wig maker was so good I hardly knew it! Also, skin peeling on hands and feet(lotions), nausea and fatique. Her fatique is much worse on irinotecan than on the FOLFOX. Also she gets a Neulasta shot, which makes her bones ache. And the weird thing is the ache moves around from treatment to treatment. She is managing to work, and inspires me to get my lazy butt up.

Best

Thanks.
I hope your wife continues to do well. I may decide to try life as a blonde or redhead instead of my usual brown. A friend of mine who had breast cancer said she went to a Halloween party as GI Jane. Gave me a good laugh anyway. I had a really hard time with nausea from the oxaliplatin and couldn't keep anything down for 5 or 6 days after each treatment. I hope that's a little better with the Folfiri. Good luck to you and your wife!

Rebecca

rrob

taraHK said:

my experience
Everyone reacts differently. For me, it was not bad. (I did with Avastin). I had mild nauseau, mild fatigue from the Folfiri. No side effects from the Avastin. I did have hair loss from irinotecan (boo hoo) -- kicked in quite late. My hair did grow back. I was able to keep working but I have a flexible job -- can work from home some. I had a nap every day (still do!). Good luck!!

Tara

Treatment
If I remember correctly you are on a Chemo break. What treatment were you on before your break? Thanks for the information!

Rebecca