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Worried about FOLFOX (neuropathy)

Karimalli
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Hello everyone, 

I have stage 4 colon cancer, diagnosed and operated 2 years ago, followed by about 12-14 cycles of FOLFIRI chemo.  I initially responded well to this chemo, and tolerated it reasonably well too.  (I am 59 with no underlying conditions, so the main problems so far have been extreme fatigue and appetite changes).   

But I was very unlucky with picc line infections, and then blood clots because of that.  So the treatment was constantly interrupted with long breaks, and my mets have grown.   And now I have been told that this chemo has stopped working.

I have been offered FOLFOX (oxaliplatin + 5FU) as second-line treatment.  They gave me a couple of weeks break to think about it.  I have done quite a bit of reading, and it sounds quite scary, especially the peripheral neuropathy. 

The leaflets do not sound too bad, but the scientific research studies I looked at, seem to suggest that it is much more widespread, with more long-term problems, and not much relief medication.   I am so worried about neuropathy that I am seriously wondering about giving up on chemo altogether.  

Is there anyone here who has been through FOLFOX and can share their experiences?  or maybe with a personal knowledge of someone else undergoing this chemo?  I know it is all different for different people, but still would be good to know how it went for others. 

Thank you very much in advance.  

Kari

  • Hello Karimalli

    I'm sorry that you find yourself in this situation and having to make decisions about new treatment. It's understandable that you would want to weigh up the possible pros and cons. 
    I've had a look using the forum search function (magnifying glass in the blue bar at the top of the page) and I can see quite a few posts where members have mentioned Folfox in the past. You might find it helpful to have a look through some of those posts. 

    I wondered if you might find it useful to chat to one of our nurses as well. You're welcome to give them a call on 0808 800 4040, Monday to Friday 9am to 5pm. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • Offline in reply to Moderator Jenn

    Thank you very much Jenn, I will take a look at those posts!

  • Offline

    Hi Karimalli

    It sounds like you have been through a lot with the blood clots and picc line infections, I'm sorry to hear you have been told that that chemo you have been taking recently has stopped working for you.

    I've just finished 8 rounds of oxaliplatin and capecitabine. I have had neuropathc side effects and I was told it was cuased by gthe oxaliplatin, so thought I'd let you know about my experience. I found that during the chemo cycles I would get the hot/cold sensitivity, quite bad at times. These symptoms would wear off, though as I went through the cycles it took a bit longer for it to wear off. As it got towards the end of the eight cycles, the numbness did get worse and in fact continued to get worse after the chemo stopped (at the end of March). It feels like it is still getting slightly worse. Its not painful, but my typing has gone to pot and I cant hold a pen properly for example.  I spoke to my oncologist and he said that is is something that happens to some patients. Some dont get anythng at all, others get it to different extents. Others do get it at the end rather than during treatment. Hopefully it will start to get better. It can take a year to get better. For some people it takes a while to start to get better. For a few it doesnt really get better. 

    So its very difficult to predict how an individual may experience these symptoms. I get the feeling that it is a common side effect but also that it usually does go away too. Its never possible to predict though. For some people it gets bad enough to stop treatments.

    I dont know if that helps but thought I'd let you know.

    Best of luck

    Nige      

  • Offline in reply to Squire

    Thank you very much Nige, and sorry for such a long delay in replying.  I was unable to log on for a while (laptop needed repairing) but now back to normal.  I read your post just before restarting chemo and it was reassuring. How are you feeling now, has the neuropathy eased up a bit?

     

    I have now had two cycles (have literally disconnected the bottle yesterday) with only a very slight effect on hands and feet, just occasional pins and needles, and felt weird steeping bare-footed on a cold tiled floor.   So far it looks like I am not one of the unlucky people who have it bad immediately.  Also my chemo is palliative so perhaps not as strong doses.  Either way it is such a relief!  Now just keeping fingers crossed that it works. 

    Thanks again!

     

    Kari

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