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MaryCarol5's picture
Posts: 102
Joined: May 2013

Has anyone been on the Folfirinox regimin for colon cancer?

I went in for chemo tx #3 yesterday (FOLFOX) and my onc decided to hold the oxaliplatin this time due to severe neuropathy.  She said that she would continue the oxy in two weeks in a lower dose.  I picked up my itinerary for the next visit and on the way home noticed that Folfirinox has been ordered. 

Their clinic is closed today so my questions have been left on an answering machine.  Perhaps some of you can help me here.  I am confused.  I have Stage 3b colon cancer, removed tumor and 2-3 of 14 lymph nodes removed positive along with 1 ft of colon, margins clear, pet clear.  Can anyone shed some light on the reasons for this possible treatment.  My first thought was that it is a mistake.

Any input appreciated and God bless!

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Wanted to bump this up for you....

I don't have any experience with Folfirinox, but perhaps someone has some input.....

MaryCarol5's picture
Posts: 102
Joined: May 2013

many thanks

Posts: 1170
Joined: Sep 2012

My husband will start Folfirinox soon. It's Folfiri plus Oxilaplatin. Not sure why it would be ordered for your situation. I am thinking perhaps an error.


MaryCarol5's picture
Posts: 102
Joined: May 2013

I am glad someone else thinks this is an error.  I was letting paranoia take over "what haven't they told me" etc...  Everything that I read just didn't make sense with my current diagnosis.

I will be thinking of and praying for your husband as he begins this next journey.


Trubrit's picture
Posts: 5041
Joined: Jan 2013

I think I'd be looking for second opinion. 

The chemo drugs we take need to be right. Little space for mistakes. 

Dont feel bad for telling your doctors everything you know. Nothing to small or to large is out of limits. 

They have your life in their hands, so make sure tou have someone competant. 

Pgood luck!

MaryCarol5's picture
Posts: 102
Joined: May 2013

Thanks for you input Sue.   I definitely have getting a second opinion in the back of mind if the orders were not a mistake.  

joemetz's picture
Posts: 493
Joined: Nov 2011

I haven't heard of FolFuri w/ Oxy. But, I understand it.

I had six months of FolFox. (Jan 2012 to July 2012) And, I must admit, that Oxy did leave a very bad case of Neuaptahty in its path. I had Erbitx as the standaby with that run.

I'll fast forward to now (June 2013) I'm now on to Folfuri w/ Avastin. I must say... the quick side effects (side effects that occurt withn the first hours and days after the treatment) are extreme fatigue, 

If the side effects are any relationship or coorolation to the success of the treatment... man this stuff should work..but it still is disturbing that you were not made aware of such a change. Or involved within the disecsion making or dicussion 

I hope this works well for you an dbest this damn cancer back.




MaryCarol5's picture
Posts: 102
Joined: May 2013

Thanks Joe- the lack of discussion in changing tx is what leads me to believe this is a "clerical" mistake.  I hope so anyway since I really do like my oncologist.

I hope that you adjust quickly to this new regimen that you are on and your side effects minimize some.  You are such a fighter and one of the ones that keeps me pushing through this hell to health.


lp1964's picture
Posts: 1238
Joined: Jun 2013

We have to triple check everything ourselves. 8 days into my chemo I found out that I was given half the dose I was supposed to get.

It's really disturbing, but this is not Aspirin, this is serious stuff.

Hope everything works out for you the best possible way.


Anonymous user (not verified)

This is the first I've heard of using irinotecan and oxaliplatin in the same infusion with leucovorin and 5FU (fluoroacil). I've been treated for stage IVb colon cancer met to the liver for over 4 1/2 yrs now. Started with a colon resection which has had no evidence of disease since the resection.  The liver is a different story. I was on Folfiri for the first 3 1/2 yrs with good results of control, but no real remission.  The Folfiri stopped working due to new more new lesions appearing than old ones calcifying. We switched to Folfox with poor results.  In six moths of biweekly infusuions I had "too numerous to count" new small lesions in my liver.  The cold intolerance with the oxaliplatin was almost unbearable without gloves to even touch a room temp door knob much lees an icecube. I was never told to wear socks, but that some of the peripheral neuropathies can  be permanent.  The only lasting trouble I've had with the oxaliplatin is numbness on the soles of my feet. and after a short time of being on my feet they start to hurt.  The longer I'm on them the worse it gets.  Neeedless to say, since the Folfox didn't work we switched to Erbitux. The first loading dose (450mg) followed by 2 weekly cycles of 250mg broke me out in a stage 3 rash and terrible acne from head to knees.  We stopped the Erbitux for 3 weeks and restarted with a different antibiotic Minocycline and added prednisone 30mg a day.  The rash and acne cleared immediately and I've been able to slowly reduce the prednisone to 5mg a day with good results.  Now the good news.  My most recent PET scan showed no evidence of disease (NED) except for one tumor left in my liver which is small and less active than before.  The troublesome inflammed paraaortic  and tracheal lymphnodes are no longer active either.  This is after only 11 cycles of Erbitux. The Erbitux doesn't bother me at all except for easy fatigue to quickly resolves after I stop working.

My doc tells me I'm one of the lucky ones who has never had much trouble with the chemo treatments and the number of cycles I've had. He says I broke his record long before my 50th cycle.  Most with IVb are either NED or dead by then.  He says I should have been dead 2 yrs ago.  Now I'm up to my 102nd cycle of chemo and I still feel as good as before I was diagnosed. I know there are a few more long term survivors out the with over 10 yrs of NED but I haven't' run across anyone who has had as many chemo cycles as I have. I'm 61 yrs old and I refuse to let cancer run my life.  I make concessions and reference all the drugs I get, but my responsibility is keeping a good attitude for myself, family, friends and coworkers. Just like everyone else on this earth today could be my last, so enjoy it.  

traci43's picture
Posts: 775
Joined: Jul 2007

My onc told me about giving 5-FU, oxyiliplatin and irinotecan all together.  It does increase the time before the disesase starts progressing.  If you are all clear, not sure if this is more helpful or not.  Ask your onc.  I only just heard about it a couple of months ago.

MaryCarol5's picture
Posts: 102
Joined: May 2013

It WAS a typo.  The scheduling clerk made the mistake and there were no orders in the onc's notes for this treatment.  I am relieved. 

Thanks to all of you for your input and support for my ?s.  Just another example of the importance of staying proactive and asking questions. 

God Bless!


Posts: 509
Joined: Sep 2012

What a relief to hear!!! We have to be so careful!! My heart was pounding as I was reading these posts!! 

I actually was just told from the oncologist this is now a new treatment plan being used.  But, I do not believe for a first course of treatment.  It is for use after either FOLFOX and/or FOLFIRI have already been tried.  

Best of luck to you!  Wishing you well with treatments! Cool


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