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folfox side effects

icfire
Posts: 2
Joined: Aug 2004

Thanks for the messages from my first post. I haven't started Immunopower yet--waiting to pass it by the onc. next week. I've had one treatment of Folfox--oxypalatin on Monday, then the 5FU bolus and 46 hour drip. I felt okay until Tuesday night--It felt like someone was gripping their hands around my neck and squeezing. This has continued through today (Friday), lessening a bit each day. So, talked to the onc, and we may discontinue the oxypalatin and continue with 5FU only--it looks like I'm one of the lucky 2% who react this way.
Anyone else go through this, and stick with it? Any other options than 5FU? The onc hasn't suggested anything, just lessening the dose of Oxy by 25% or discontinuing it.

Thanks - Scot

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Scot--I only did 5fu/leucovorin for 6 months--not oxy. So there are probably differences in side effects. Having said that no matter what chemo you are given there can be major differences in the effects between different patients even tho they might be on the same poison. I got thru my six months with various effects although the last 2 months were the worst. Tolerable but still no fun. So if you have the oxy discontinued you will be able to tolerate 5fu/leuc. ok. There will be others here that are doing oxy as well and should be able to help yu. Just keep in mind that "any" side-effects must be reported to your onc., no matter how trivial, you are "playing with poison" literally and reactions can vary.
All our best--luv--kanga n Jen

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

I didn't have the neck gripping thing, but did have the cold aversion, neuropathy and nausea. When I had
5fu & radiation four years ago, there were other side-effects, but no cold aversion, neuropatthy or
neck stuff..you might be able to handle a reduced dose.. the Oxaliplatin(sp) is a relatively new drug, and although 8 rounds were very difficult, I
believe the combination of 5fu/Oxal contributed more to a nearly 75% reduction in my lung mets, where 5fu alone may not have been as effective..all this is speculation on my part, but
if you can tolerate the combo with a reduction, you may get better results. bud

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Scot: see discussion of oxaliplatin in 09/02/04 post by juliababy..also if you word search Oxaliplatin on this site, you will find an evenings reading material. Bud

tkd3g
Posts: 768
Joined: Aug 2004

Hey Scot, sorry it isn't working our for you. I had major concerns over the same treatment when I got my 2nd dose last week. My symptoms seemed worse than the first week and I wondered if I wasn't highly sensitive. Well, after a discussion with my oncologist, I felt better. Going for treatment 3 on Wed.

I get that throat sensation, but only when I eat or drink cold stuff. Do you have it all the time?

Hang in there. You are in my prayers.

Barb

lhsteer
Posts: 28
Joined: Jul 2004

I have been having fol fox for 3 sessions evey two weeks the 46 hours fannypack, then on the 3rd starting combining avastin knewest drug out there, did it 1 1/2 hour then the next session only 60 min. now down to 30 on 6th session some of side affects fingers very sensitive to cold, can't eat or drink anything cold affects throat, I have tingling feeings in feet and hand in fact just this past week I got the whole tingling feein in my whole body when told Onc. he gave me some magnesium and calcium that they put in my iv said it would help aleviate tingling so hopefully he is right since I have 4 more sessions and each one gets a littl harder and harder, but I take pain pills and sleeping pills I am not going to be uncomfortable and in pain going thru this I a m not a martyr, so they do help. when I get thru with this my children will have to throw me in a drug rehab somewhere:)

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