Another question for all the "Experienced" people

jenben59
jenben59 Member Posts: 136 Member
edited March 2014 in Colorectal Cancer #1
I'm on my 3rd chemo treatment with Oxaliplatin the first one was alright, the second one was a breeze, this third one I have that tingling/numbness/pain in my hands so bad it hurts to type. I was given a "list" of side effects before chemo started and I read that these are possibilities, it doesn't mean you will get them. What I didn't realize is they can change at each infusion. Is this common/normal? I don't think I should even take a chance driving it's that bad. Any suggestions or advice?

Comments

  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #2
    Tingling/pain
    Jenben... that is probably quite normal... everyone feels side affects to different degrees, some worse than others. But if it is so bad that it is interfering with your daily life, then I would definitely tell your oncologist. They might have to lessen the dosage, or have it on a slower drip.

    Whenever you get any kind of side affect, you should make a point of letting your oncologist know ... they can't correct the problem unless they know it's happening. And if you wait until your next treatment, chances are that side affect will have gone away and you will either forget to mention it or will describe it in much lesser terms. So give your onc a call and let him/her know what you are experiencing.

    Hugggggs,

    Cheryl
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #3
    CherylHutch said:

    Tingling/pain
    Jenben... that is probably quite normal... everyone feels side affects to different degrees, some worse than others. But if it is so bad that it is interfering with your daily life, then I would definitely tell your oncologist. They might have to lessen the dosage, or have it on a slower drip.

    Whenever you get any kind of side affect, you should make a point of letting your oncologist know ... they can't correct the problem unless they know it's happening. And if you wait until your next treatment, chances are that side affect will have gone away and you will either forget to mention it or will describe it in much lesser terms. So give your onc a call and let him/her know what you are experiencing.

    Hugggggs,

    Cheryl

    Tingling.....
    Wear a pair of gloves when you go outside to do anything if its 60* or colder. The Oxiliplatin makes you cold intolerant . I wear them at all times outside and even though my hands and feet still tingle I am able to stay out. Try warm showers to alleviate the tingling and numbness.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #4
    It's Normal
    Jen, those side effects are totally normal as others have said. It took a few times before I got those side effects, maybe 2-3 times. I had it bad with the cold and ice cream (which I LOVE) so I would eat very tiny spoonfuls of it. I too had trouble with temps that were in the 50's. I used to walk during lunch but I would freeze. Then in the summer I had to stay out of the sun. Ah yes, I miss those days... I have not been on flofox for about 4 years now so I have a whole new set of fun side effects to deal with. As far as driving goes, I had no problem. I still have some numbness in hands and feet but it has not stopped me from playing guitar or driving or anything like that. I would use common sense and if you really can't feel your feet well, then you might was to talk to your Onc and see what they say.
    Best wishes, hang tough
    -phil
  • maglets
    maglets Member Posts: 2,576 Member
    #5
    PhillieG said:

    It's Normal
    Jen, those side effects are totally normal as others have said. It took a few times before I got those side effects, maybe 2-3 times. I had it bad with the cold and ice cream (which I LOVE) so I would eat very tiny spoonfuls of it. I too had trouble with temps that were in the 50's. I used to walk during lunch but I would freeze. Then in the summer I had to stay out of the sun. Ah yes, I miss those days... I have not been on flofox for about 4 years now so I have a whole new set of fun side effects to deal with. As far as driving goes, I had no problem. I still have some numbness in hands and feet but it has not stopped me from playing guitar or driving or anything like that. I would use common sense and if you really can't feel your feet well, then you might was to talk to your Onc and see what they say.
    Best wishes, hang tough
    -phil

    tingles
    Hi Jen...I start my second oxy infusion tomorrow and then 2 weeks of xeloda. I had really bad tingles the very first round.....Buzz is right....you gotta stay warm. I will be interested to see if mine is worse or better because it's not quite as cold here....first round it was -30 degrees.

    Hang in kiddo and keep an good eye on the tingle....don't know if this helps but my onc says she worries about patients who don't get the tingling till 6 or 7....then there is little to be done...at this point if you are really suffering they can still reduce.

    I'll let you know how tomorrow goes.

    best regards,
    Mags
  • pamysue
    pamysue Member Posts: 105
    #6
    You are normal.
    But I say call your onc anytime you feel scared or uncertain. They make enough money to answer as many questions as you want to ask.

    Regarding driving. My hands and feet are still horribly painful from neuropathy. My chemo nurse said that going into town (I live out in the boonies) wears me out because driving uses your hands and feet the most and that is where my pain is. There are days I will not drive because I just don't feel sure of myself and I don't want to hurt someone else. But that is me. Go with your gut feeling.
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #7
    Magnesium-calcium infusions...
    Mag-cal infusions really help with the neuropathy. Ask your oncologist if you can get it when you have your chemo infusions. My hospital will not do it because it adds to the time a patient needs to stay and takes up a chair. It sounds horrible but it is a very busy hospital. The other option is taking mag-cal infusions daily. Just make sure you get a brand name that is known not to use fillers. But it is totally normal as oxaliplatin is very well known to have accumulative effects. I could not even pick up a fork or knife at room temperature the first few days. Good luck. Monica
  • maglets
    maglets Member Posts: 2,576 Member
    #8
    Monicaemilia said:

    Magnesium-calcium infusions...
    Mag-cal infusions really help with the neuropathy. Ask your oncologist if you can get it when you have your chemo infusions. My hospital will not do it because it adds to the time a patient needs to stay and takes up a chair. It sounds horrible but it is a very busy hospital. The other option is taking mag-cal infusions daily. Just make sure you get a brand name that is known not to use fillers. But it is totally normal as oxaliplatin is very well known to have accumulative effects. I could not even pick up a fork or knife at room temperature the first few days. Good luck. Monica

    Hi Jen
    Hi Jen I finished my second oxy infusion today and when they reviewed my side effects they decided to reduce my dose by 20%. I felt badly about this wanting to fight on with the most strength. The oncology pharmicist came to talk and she said I was on the highest dose and it is not unsual to reduce the dose.

    I have the hand pain already....typing in gloves...and my throat is definitely sensitive....no cold for sure. I think this is totally normal and the way the oxy goes.

    I wish you all the best Jen....hopefully your symptoms will let up in a few days....

    Best love,
    Mags
  • impactzone
    impactzone Member Posts: 555 Member
    #9
    That is normal for me. I
    That is normal for me. I couldn't move my arm for a day afterwards and the extreme sensitivity to cold was there. I agree that it is best if someone could pick you up or drive you for a couple days.
    Sorry..
    Chip
  • pamness
    pamness Member Posts: 524 Member
    #10
    I am now "experienced" 18 months ned
    You got a lot of great information from others on this board. As a "short time vetran", talk to your oncologist or nurse practioner about your side effects. I had my chemo, etc. in the spring and summer and never had to experience the cold weather.

    Pam
  • Mike49
    Mike49 Member Posts: 261
    #11
    normal but discuss it
    I use L-Lysine an amino acid available at vitamin stores, and since I went vegetarian I take a low dose of B12 since I don't get any from any other source. I have tingling, we just had a cool snap and it was very noticeable and I started to wear the gloves. Tell the Oncologist, stay warm and expect some of this, Oxiliplatin is a platinum based drug and its tough on the nerves. luckily its tough on cancer cells too. Every infusion is a little different today is the last day of my seventh round and its been pretty easy. but number four knocked me for a loop. Go figure. We are all in this together good luck.

    Mike
  • impactzone
    impactzone Member Posts: 555 Member
    #12
    I know that some have said
    I know that some have said that increasing the time over which it is taken ( a longer infusion) might help.
    Chip

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