Who had experience on FOLFOXIRI?

I hate to have CT scan or PET scan. Each time I am so nervious and afraid to find out something wrong. This time PET scan showed some spots in Abdomen. My Onc dr. wants me to take FOLFOXIRI every two weeks plus Erbitux weekly. It is very rough. I need to take lots of pre meds to control throw up vomit and dirreahea. I feel so weak and tired.

I wonder anyone had this cocktail before. Does it work? How long you have taken?

On Oct 03, 2010 2:34 PM mimi7 wrote:

I hate to have CT scan or PET scan. Each time I am so nervious and afraid to find out something wrong. This time PET scan showed some spots in Abdomen. My Onc dr. wants me to take FOLFOXIRI every two weeks plus Erbitux weekly. It is very rough. I need to take lots of pre meds to control throw up vomit and dirreahea. I feel so weak and tired.

I wonder anyone had this cocktail before. Does it work? How long you have taken?

Hi mimi7,

I have had 12 rounds of FOLFOX, after that 9 rounds of FOLFIRI.  I've never heard of FOLFOXIRI.  What drugs are in it? I did ok with both rounds I was on. With the FOLFOX I did have some neuropathy. Never got sick from either.  They gave me a rx for emend which I took for 2 days while on the 5FU pump.  Alot of tiredness, and my blood counts were low. Ask your oncologist for the info sheets on each drug. Please let me know , after those 2 chemo rounds, I am glad to report I'm tumor free in less than a year.  I had 6 tumors in my liver.  Good luck.  Let me know if I can help.

Irishgirl105

I think that I may be starting Folfiri within the next few weeks for Stage IV colon.  I also had 12 rounds of Folfox in 2009.

I hear Emend is great help. 
I am woried about the fatigue as I need to continue working!!

Glad you are Tumor Free!! That is wonderful!!

jssct,

Emend is a great help.  Folfox I think made me more tired that folfiri.  I did have more queezy feeling with the folfiri, but it was off and on.  Lorazapam helped. Many people experience diahrrea with folfiri but I never did. Did you have 5FU with folfox? I had a pump for 48 hours, they did it with folfox and folfiri.  I also get avastin, as Iam KRAS positive and erbitux will not work for me.  Good luck. Tumor free is great, but I worry from 1 test to the next.  I have a CEA every 2 weeks. Hope the folfiri isn't hard on you.  The nurses say folfiri is easier to tolerate.

I did have 5FU with Folfox.  The Fatigue always settled in post unplugging the pump

I take Lorazapam nightly for anxiety.

I am tumor free, but my cancer did met from my colon to my abdomen area, so there still cancer cells in me.

The Oncologist mentioned cytoreductive surgery

http://www.surgicaloncology.com/soaexpec.htm

not sure if I am even a candidate for this though

Hi Irisgirl105

I had 10 rounds of Folfox in 2008 and 8 rounds of Folfiri in 2009 .My tumor that mets to lung had shunk to the point that surgery was possible. At one time  last Nov, 2009,  my PET scan was clear without tumor.  but 3 months later found a big tumor 8x 6 cm at adrenal glend. Onc said may be due to change of DNA of CC, cancer cells became aggressive. Now I was found more spots at abdomen. ONC put me on FOLFOXIRI. That is Irinotecan + Oxaliplatin + 400 mg Erbitux + Folinic acid + 4830 mg of 5 FU ( carried pump for 72 hrs). There are also lots of pre med to control vomit and diarrhea, alltogether 8 hrs hook on IV. It has to be taken every other week  and Erbitux every week. Doc said this is the last line of chemo drug to control CC mets.

It was very very rough. Even with all pre meds  and pills  to control vomit and loose stool, I still have it all the times. I feel so weak and depress. My white bood cells drop to 2.   I hate it. I have to take Neulastin shot to myself. But after that I felt like someone squeeing my neck and spine, like forcing them to produce more white blood cells/stem cells. It hurts.

Sometimes I pray to my Lord if you have to take me home , take me then. I cannot play the game anymore. one day told me I am cancer free, next day found me to have mets to here and there. Now I am pouring toxic to my system that worst than Drano/toilet cleaner. I am very tired and mad of myself.

I have a nice job, loving family and a good husband. I should not  leave them behind, but the thought of quit, stop chemo , just take alternative treatment  fill up my mind. Should I stop????

Mimi

I am presently on Folfoxiri (or Superchemo as it is known here) albeit without the antibody since I am over my quota of them. 

This is my 6th type of chemo (I am stage 4 met)  and it has proven very successful so far. Even after one cycle my CEA dropped dramatically and tumor reduction has been good (I have mets in both lungs and right kidney). I have just completed 5 cyclesand will endeavour to complete 8. 

Side effects are heavy but mostly fatigue with corporal aches similar to when going down with flu. I take EMEND against nausea although I have always been pretty much nausea free and have only vomited once in 4 years! 

Inverted yoga helps a lot. I take personal lessons and my teacher adapts the excercises according to my current aches and moans. Breathing execises help combat nausea. Breath-in for 3 seconds and expel air (through nose) for 6 seconds. 

Good luck, just consider it a necessary evil.