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Folfox Side effects?

Kennytoye
Posts: 2
Joined: Jun 2013

I am wondering and asking who had side effects with folfox 5fu. I am embarking on this wonderful journey of 12 rounds starting June 10th. I just got my Port in. I have a ileostomy and im 27. If you can please share with me what to expect. I would rather hear from my fellow Warriors that actually get blasted than my nurses, doctors and pharmacists. Please share your age, again i'm 27 and i plan to work through the whole thing!

 

Aloha

 

MaryCarol5's picture
MaryCarol5
Posts: 95
Joined: May 2013

Hi Kenny!  I am new at this too and just finished my first treatment of FOLFOX on May 23.  The neuropathy hit me within hours, tingling hands and feet followed the next day by complete numbness in the feet.  I also experienced some mild lower leg pain and cramps.  The nausea was bad at times, even with all of the scheduled medications but I never did vomit.  Do watch out for the cold sensitivity.  I had a glass of room temp water the day of treatment and it felt like knives going down my throat.  I have had nothing but warm water, tea, and coffee since.  And the fatigue!!!  I've never experienced anything like it.  I am one of those people that as a child had "ants in my pants" and still have trouble sitting still.  Within hours of disconnect I dropped and just going to the restroom was a tremendous effort and left me out of breath.  Yesterday was one week post tx and the first day I actually felt close to normal, getting some chores done.  I had a few others including hot flashes, a slight odor (maybe, noone else said they could smell it), sore mouth (but no mouth sores yet), and hand tremors/nervousness. 

Keep in mind that everyone responds differently to the treatments. I wish and pray that you may be one of the lucky ones and have little to none. 

Also, everyone says to stay hydrated and absolutely do this.  Around 90 oz of H2O/day is what I have been reading mostly and it does make a difference. 

Hope all goes well-

MC

db8ne1's picture
db8ne1
Posts: 92
Joined: Feb 2013

Hi, Kenny.

You've come to the right place.  Lots of caring individuals here willing to share their advice and experiences.  So sorry to hear you have joined our ranks, though...

I just started FOLFOX on 5/15/13.  The first round pretty much kicked my butt!  While I had minimal neuropathy and a very short period of sensitivity to cold (room temp stuff was fine), I had bouts of uncontrolable, very painful diahrrea for much of the week following the infusion.  And, of course, the expected fatigue.  While I had nausea, it too was minimal and I only took one oral RX.  Generally, eating a few saltines settled my stomach.  I also developed mouth sores (so RINSE several times daily) and food tasted rather bad. 

I just got unhooked from my 5FU pump on Friday - completing my second round.  I slept most of yesterday afternoon and last night.  If the pattern is the same as last time, I could expect to see side effects ramp up again starting Sunday.  But, let's hope not...

That said, we are all different.  I've read many whose side effects were minimal - and some whose side effects have been much worse than mine.

I hope yours are minimal, as well.

J

Trubrit's picture
Trubrit
Posts: 1482
Joined: Jan 2013

27! So young! 

I have a friend diagnosed at 26.  She is 32 now, clean and healthy.  

What stage have they diagnosed you? 

Ive finished my round of FOLFOX. Like people sayat everyone experiences different reactions, but none of us will say it was a fun journey.

You are young though. That has to be a great help. 

My friend was into drugs when she was diagnosed, but cleaned up her act and is free as a bird. 

I've had 26 side effects, but I'm an old bird.  here's hoping it not so rough on you. 

Keep us posted. 

Blessings,

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

My first treatment fatigued me terribly. That was in December. I just had my 13 infusion yesterday, and I have the pump until tomorrow. I am back to teaching full-time, except for the Friday of my infusion. I'm tired Monday, but I get thru. I have the tingly/glass shards in my mouth, etc. for a few days after removing the pump. By the weekend, it's pretty much gone. Remember, people react differently. I feel very fortunate and will continue treatment. I did not get the avistan yesterday as I am having my colostomy reversed on June 17th. But, I will have tx June 14th, pump off the 16th (again, no avistan).

Judy

 

Coppercent
Posts: 143
Joined: Jan 2012

I am twice your age. Sorry you have to go through this at such a young age. I worked full time through treatment and stayed active. I believe this is what got me through it. My infusion days were Wednesday and my infusion center was kind enough to schedule me as their first patient so I was through early enough to get to work by noon.  On Friday I would go to the infusion center on my lunch break and get disconnected and straight back to work.  I had cold sensitivity for a couple days after infusion and had to warm my drinks.  After a few sessions my blood counts dropped and I ended up doing the neulasta shot. For me this shot brought on extreme fatigue. Due to the shot a few days over my remaining treatments I had to be driven to work on days I had to work at a different location. At that location I had to walk two miles up a hill from the parking lot. It was too much with the Neulasta. Other then those few days it was not horrrible. I cut out the oxy on a couple of treatments to prevent long term neuropathy which worked because I don't have any side effects from my treatments. Work closely with your oncologist and you will do well. Remember it is a team adventure.  For me having a temp ostomy was a plus and made the bath room issues much easier. 

Nana b's picture
Nana b
Posts: 2912
Joined: May 2009

It was a tough ride.  I worked through my chemo.  Made up my chemo time, so worked 10 hours a day and had a 2 hour commute.  2.5 on chemo days.  the last several infusions, I slept through and my husband and daugther had to pick me up.  I lost 30 lbs because nothing tasted good.  I juiced and ate fried potato burittos and quesidillas, that was all I could get down.  Room temp lemonaid was my drink when I wanted something different.  I stayed away as much as I could from sugar but not completely.   Mouth sores, I used magic mouth wash, got that from my ONC for mouth sores.  you can google it.    My blood counts also dropped.  I did take 1 week break to go on vacation and then I took a 6 week break when I had surgery.    I wish I would not have worked, that was a bad call for me.  I should have stay on disalbity and stayed eligible for my LTD.  I'm fighting for my LTD because there is no cure for stage 4 so how can I be cured.  

 

You can take breaks.  Alwasy say what hurts.  If on pain meds be careful, constipation hurts, the pain for me was almost unbareable.  Feel free to message me with questions.  I'm 55, Diagonsed Stage 4 in 2008.  Almost 5 years ago!

 

Take care of yourself!

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