Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Side effects of Folfox+Avastin

lmliess Member Posts: 329
edited March 2014 in Colorectal Cancer #1
I think I am doing follow up chemo with Folfox+Avastin, I still have to confirm with my ONC. But I am wondering what side effects come from this mix? I did pretty well with 5FU, no hair loss...just had to stop for a week because I got 'hand and foot' syndrom. How about getting sick? I know everyone is different, I just want to get a feel for what may be coming my way.


  • PhillieG
    PhillieG Member Posts: 4,866
    Try searching the board
    I found this link, search the board using key words like "side effects folfox" or Avastin. That will give you some info. Check the dates too, try to get the most recent. Avastin goes back to 2004, things have changed since then. I did all of those and had no hair loss, it thinned but I did not lose it (the hair that is...)
  • Wenchie
    Wenchie Member Posts: 88
    Hi Liess:
    I made it through all the FOLFOX treatments with no hair loss, no nausea, and a little diarrhea but I think that was primarily due to radiation. I wasn't taking Avastin at the time but I will be taking it when I start my FOLFIRI. The FOLFOX was luckily a breeze other than the fanny pack pain in the ****!
  • lisa42
    lisa42 Member Posts: 3,625
    Hi the oxaliplatin that is part of Folfox is the kicker. It's the one that probably melted away so many of my tumors when I first took it with many tumors in me, so I'm glad I took it for that reason. It's still probably good to take it post surgery even without any tumors in you now for "mop up" and prevention of any future cancer growth, if you can tolerate it.
    Not everyone reacts badly, but oxaliplatin is definitely known for kicking people in the butt.
    Almost everyone on it experiences oversensitivity to cold. You won't be able to eat or drink anything cooler than lukewarm. When I forgot, I was quickly reminded- it felt some times like my throat would close in. Other times, it felt like sharp pieces of glass going down my throat. Once that happens to you, you'll remember the next time to eat or drink it warm!
    It's worse in cold weather so, thankfully, you'll be starting it in warm weather. When I'd go into a grocery store, I'd need to take someone with me (or else bring gloves) because I couldn't touch anything out of the refrigerator or especially the freezer section. If I did go into the grocery store myself or without any gloves (which I did a couple of times), I'd have to quickly grab the item and practically throw it into the cart. It was probably kind of humorous for anyone watching me! I remember the one time I was in line and was practically in tears- I couldn't pick the items up out of my cart to put them on the store's conveyer belt. I had to ask for help. I was embarrased, but someone quickly and kindly helped me. Also, there's the tingling in your hands and feet. The first few times I had treatments, this sensation would last just a day or two, then go away. Towards the end though, it started so it wasn't going away and my hand would also do weird things, like it would "get stuck" closed & I'd actually have to take my other hand and physically pry open my fingers. I got to the point where I was dropping things and I couldn't hold a pen or pencil normally at all. **When/if you experience that, make sure you tell your doctor immediately! That would be the time you'd probably need to discontinue it. I waited and I had to deal with neuropathy for quite a while. Hopefully you won't experience that because not everyone does- but just be aware of it!

    I'm happy to report, also, that the neuropathy in my hands/fingers is back to normal now (it got back to normal about 8 months after finishing Folfox- it was gradually getting better up to that point. It did feel pretty lousy and weird though. My feet still have definite numb/tingly spots under and between my toes. It used to bother me a lot- now I don't notice it much anymore (I'm probably used to it)- I do notice it when I walk barefoot, though- something I always used to do, but now don't like to since it feels funny.

    I'm sorry if I overwhelmed you with all this, but I think it's better to be aware ahead of time for what to watch for. Hopefully it won't all happen to you, but if it does, then you'll know what to expect.

    Take care & God bless-