Oxaliplatin Question

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NWGirl
NWGirl Member Posts: 122 Member
edited March 2014 in Colorectal Cancer #1
I'm currently on chemo (3rd round was today) with 5FU (I think that's what it's called) and Oxaliplatin. Today it was cold here and for the first time I'm really feeling the neuropathy in my hands - they just don't want to work right. It seems from reading posts that the neuropathy gets worse as treatments go on. My question is, did any of you find that early on (I consider 3rd treatment early) you were able to manage the side effects? Did they only last a short time at first? My hands don't really hurt (once I warmed them up), but they are just hard to control. I have one more round of chemo with the oxaliplatin and then off it for 6 weeks while I'm on radiation and 5FU. I'm wondering if I can get through the next treatment and then be off it for 6 weeks if I'll go back to zero so to speak or it the side effects will pick up where they left off. (Once I finish radiation I go back on oxaliplatin & 5FU for 4 more treatments) Very strange feeling, just wondered if anyone else had this sensation of not being able to control your hands.

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  • chynabear
    chynabear Member Posts: 481 Member
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    The cold is going to really amplify the effects of your chemo. Make sure you keep warm. Especially, use gloves. Many even need gloves in order to pull stuff out of the fridge. If it is a cold day, make sure you are wearing plenty of clothing to cover your skin, along with scarf, gloves, hat, etc.. See if that helps your neuropathy.

    By your report of it being really cold and really feeling the neuropathy, I suspect that the cold just really got to you. For me, reaching into the fridge didn't typically effect me. Then, one day, I pulled out a gallon of milk and lost all control and function of my hand.

    I have also read that many people took B6 (I believe, you might want to verify) to control the neuropathy.
  • cheryltaco
    cheryltaco Member Posts: 39
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    I'm sure you know by now all the trouble I've had with Oxali. I didn't get too many symptoms early on, but when I did - bang they were bad. Not only did I have problems with my hands when exposed to cold, but my feet, lips, tongue, and voice box were also effected. Be sure to stay covered when exposed. I'm not sure but the drug has a cumualitive effect and for me seemed to pick up right where I left off between the breaks. Be sure to communicate any problems to you doctor. Best wishes, Cheryl
  • nudgie
    nudgie Member Posts: 1,478 Member
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    I was on the FLOFOX Regime which consisted of 5FU (pump 46 hrs), Oxy and Lecavorin (sp?) every other week. My Onc Nurses told me NOT to eat or drink any cold beverages or food, so what I had to do was drink a lot of room temp water or juices. Foods had to be room temp or warmed-up even fruit.

    I had to wear gloves, hat and scarf over my face anytime the weather got cold and used glove to go in the refrigerator or freeze and could not use cold water to wash my hands.

    You get use to it.
  • KathiM
    KathiM Member Posts: 8,028 Member
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    Water. Please. Drink as much as you can. Especially around infusion time.

    wierdly enough, I insisted on the coldest water I could get....of course, in an insulated cup so I couldn't feel the cold in my hands. I even went so far as to buy an electric blanket, because unlike you all, I didn't know about all of you during my treatment to know about this being normal. I thought I was just nuts...well, it WAS December (in my defense...lol!).

    Hugs, Kathi
  • kirsten1
    kirsten1 Member Posts: 23
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    I too had very bad neuropathy on my hands and mouth during treament and it literally started three hours after the first infusion when I tried to have a drink....it often went completely away between treatments, unless I tried to put my hands and feet in cold water. It got worse as the treaments went on and then after i finished round 8, it started getting better and better until almost a month after, I woke up one day to totally numb feet and hands. I tell you this, not to scare you, but so that you ask your onc. about this, i knew the possible side effects, but not the extent of them, and how long it could go on...I My oxali. was never adjusted and i just lived with the symptoms because i thought they would be temporary. I am 3 months out of treament and have tried a bunch of things including e-stim., stretching, exercises and sensory integration...I am hoping to use a neurotin compound that some others have found useful. I would recommend asking your onc. more questions, kind of wish I had at the time. I still have faith that mine will eventually resolve....
  • Limey
    Limey Member Posts: 446 Member
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    side effects are different for each person. The neuropathy is one of the harder symptomms of this chemo. for me, it keept getting more difficult with each treatment. drinking water - difficult as it was really helped. B6 also helped. for comfort i took 2 lbs of white rice and sewed it into a fleese bag about 8x8 in size. heat in the microwave for 4 minuites and you will have a couple of hours of relief. This did not fix the neuropathy but mana oh man does it feel nice when your suffering from the cold to the bone feeling. Try it. and remember. this to shall pass. you will make it.
    Mark.
  • tex.survivor
    tex.survivor Member Posts: 5
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    I had similar problems with both 5FU and oxiliplatin and Leucovorin. Mine was so bad that I couldn't even WALK past the refrigerated foods in the supermarket, sometimes even with gloves on. You might want to check with your oncologist regarding a prescription for Neurontin (generic gabepentin) which is used to treat both chemo-induced and diabetic neuropathy.

    The size of the dose and frequency can be adjusted to minimize any unpleasant symptoms from the neuropathy.

    Hope this helps you.