oxaliplatin plus xeloda

maglets
maglets Member Posts: 2,576 Member
edited March 2014 in Colorectal Cancer #1
Hi everyone...I am just recovering from my second resection for liver mets...started with colon in 2005. I did 5FU and had a really hard time with that one. After the cancer moved to the liver I did Xeloda and didn't find it all that bad. Just saw my oncologist yesterday and now she is going to try oxaliplatin infusion and add the xeloda pills .

The description of the oxal. and the cold doesn't sound too great especially in Canada in Winter!!! any advice anyone???
any observations about the combo of these two drugs and side effects??

Thank for you help.
maglets

Comments

  • taraHK
    taraHK Member Posts: 1,952 Member
    #2
    I'm on that regime
    Hi Maglets,

    I am on that exact regime now (oxaliplatin infusion and xeloda pills). I've also been on FOLFOX previously (5FU plus oxaliplatin) -- with and without Avastin -- so I have quite a lot of experience with oxaliplatin!

    Oxaliplatin does have some weird and unpleasant side effects -- although of course they vary from person to person, and some get them worse than others. Avoid eating and drinking cold things for at least a few days after the infusion (seriously). Avoid touching cold things for at least a few days (seriously). You may experience "jaw spasm" (soreness in jaw at first bite of food -- it's ok after that first bite). For me, that just lasts a couple of days. You may experience "pins and needles" in your fingers and toes (neuropathy). I wear warm socks/slippers all the time. Some people have an 'allergic reaction' to oxaliplatin -- I have had mild allergic reaction (face rash) -- which is now controlled with steroids and antihistamine before and after infusion. I don't mean to scare you with all this! Some people have mild or no side effects -- I sure hope you are one of them. There is the "usual" (chemo) nausea (for some people) and fatigue. I'm having trouble sorting out if the fatigue I have is due to the oxaliplatin or xeloda or both. You may have a better sense of that, having had xeloda alone. Oxaliplatin has good results in the medical literature so I hope you have a great outcome with it. Please keep us posted on how it goes. I'm in cycle 5 out of planned six -- but will probably continue with xeloda alone after that.

    Best wishes
    Tara
  • maglets
    maglets Member Posts: 2,576 Member
    #3
    thank you so much
    Tara thank you for that summary....that was really helpful. I had some really hard side effects with 5fu....all the skin on my face and hands kept peeling off....and my digestion system just didn't seem to function. I kept a little record of the xeloda...I definitely had fatigue and abdominal pains, mouth soreness, insomnia, aches and pains. If I can help you in any way please let me know.....thank you so very much
    mags
  • dorookie
    dorookie Member Posts: 1,731 Member
    #4
    maglets said:

    thank you so much
    Tara thank you for that summary....that was really helpful. I had some really hard side effects with 5fu....all the skin on my face and hands kept peeling off....and my digestion system just didn't seem to function. I kept a little record of the xeloda...I definitely had fatigue and abdominal pains, mouth soreness, insomnia, aches and pains. If I can help you in any way please let me know.....thank you so very much
    mags

    Some Info Please
    Hi there,

    I am starting Xeloda today, all by its self. I was DX with stage 3 in Jun 07, did surgery, chemo, radiation and more chemo, cleared the beast for a few months then it came back in my lung in Nov 08, had surgery and now I am starting Xeloda. I have taken it before, back when I was on radiation. So its hard for me to tell which side effects were caused by what. I was taking a high dose, my onc is very aggressive, 4900 mg a day. That is also what I am taking now. I never got mouth sores, or any hand or feet peeling (knock on wood). I did have fatigue, sick to my stomach some, aches and pains, lots and lots of diarirra(sp, sorry bad speller) but I think you know what I mean. But I believe most of that was due to the radiation I was given, but cant really be sure.

    Any other info you might have would be great to hear.

    Thanks so much
    Beth
  • maglets
    maglets Member Posts: 2,576 Member
    #5
    dorookie said:

    Some Info Please
    Hi there,

    I am starting Xeloda today, all by its self. I was DX with stage 3 in Jun 07, did surgery, chemo, radiation and more chemo, cleared the beast for a few months then it came back in my lung in Nov 08, had surgery and now I am starting Xeloda. I have taken it before, back when I was on radiation. So its hard for me to tell which side effects were caused by what. I was taking a high dose, my onc is very aggressive, 4900 mg a day. That is also what I am taking now. I never got mouth sores, or any hand or feet peeling (knock on wood). I did have fatigue, sick to my stomach some, aches and pains, lots and lots of diarirra(sp, sorry bad speller) but I think you know what I mean. But I believe most of that was due to the radiation I was given, but cant really be sure.

    Any other info you might have would be great to hear.

    Thanks so much
    Beth

    xeloda alone
    oh good luck with that Beth...gosh it's always so scarey when you start and you think you will remember but you don't...some sort of chemo amnesia! I am just going to list my symptons...I don't think I had any great tips but sometimes it helps if you think someone else is feeling the same thing.:)I had extreme fatigue,trouble sleeping,sore throat,all my surgery scars ached,,,,oh started to take 1 mg of lorazapam to help with sleeping. I had severe abdominal pain, My GP siad that all that scar pain can be influenced by weather....so if it's going to rain you will proably fee worse.. I took viatmain B6 to help with mouth and nose lining so they were less sore. I got the tingly feet and hands so that driving was uncomfortable. Near the end of the cycle I would start to feel really blue and depressed and my nose dripped all the time.

    I will be starting in a couple of weeks.....they want to bone scan and colonoscopy again....please stay in touch
    Best wished
    Mag
  • maglets
    maglets Member Posts: 2,576 Member
    #6
    taraHK said:

    I'm on that regime
    Hi Maglets,

    I am on that exact regime now (oxaliplatin infusion and xeloda pills). I've also been on FOLFOX previously (5FU plus oxaliplatin) -- with and without Avastin -- so I have quite a lot of experience with oxaliplatin!

    Oxaliplatin does have some weird and unpleasant side effects -- although of course they vary from person to person, and some get them worse than others. Avoid eating and drinking cold things for at least a few days after the infusion (seriously). Avoid touching cold things for at least a few days (seriously). You may experience "jaw spasm" (soreness in jaw at first bite of food -- it's ok after that first bite). For me, that just lasts a couple of days. You may experience "pins and needles" in your fingers and toes (neuropathy). I wear warm socks/slippers all the time. Some people have an 'allergic reaction' to oxaliplatin -- I have had mild allergic reaction (face rash) -- which is now controlled with steroids and antihistamine before and after infusion. I don't mean to scare you with all this! Some people have mild or no side effects -- I sure hope you are one of them. There is the "usual" (chemo) nausea (for some people) and fatigue. I'm having trouble sorting out if the fatigue I have is due to the oxaliplatin or xeloda or both. You may have a better sense of that, having had xeloda alone. Oxaliplatin has good results in the medical literature so I hope you have a great outcome with it. Please keep us posted on how it goes. I'm in cycle 5 out of planned six -- but will probably continue with xeloda alone after that.

    Best wishes
    Tara

    hair loss
    Tara did you lose your hair with oxaliplatin?????

    thanks, mags
  • dorookie
    dorookie Member Posts: 1,731 Member
    #7
    maglets said:

    xeloda alone
    oh good luck with that Beth...gosh it's always so scarey when you start and you think you will remember but you don't...some sort of chemo amnesia! I am just going to list my symptons...I don't think I had any great tips but sometimes it helps if you think someone else is feeling the same thing.:)I had extreme fatigue,trouble sleeping,sore throat,all my surgery scars ached,,,,oh started to take 1 mg of lorazapam to help with sleeping. I had severe abdominal pain, My GP siad that all that scar pain can be influenced by weather....so if it's going to rain you will proably fee worse.. I took viatmain B6 to help with mouth and nose lining so they were less sore. I got the tingly feet and hands so that driving was uncomfortable. Near the end of the cycle I would start to feel really blue and depressed and my nose dripped all the time.

    I will be starting in a couple of weeks.....they want to bone scan and colonoscopy again....please stay in touch
    Best wished
    Mag

    Thank you
    Thanks for the info. I will stay in touch, I am here all the time. I took my first dose this morning. I have to take it in the mornings and evenings. I feel like I am just waiting for the side effects to start, crazy huh? Well its the first day, and I am just going to take it easy today and see how things go. Do you remember about when you started feeling the side effects, like what day into your treatment? I have to take the pills for 14 days and then have a week off was this what you did too?

    Beth
  • taraHK
    taraHK Member Posts: 1,952 Member
    #8
    maglets said:

    thank you so much
    Tara thank you for that summary....that was really helpful. I had some really hard side effects with 5fu....all the skin on my face and hands kept peeling off....and my digestion system just didn't seem to function. I kept a little record of the xeloda...I definitely had fatigue and abdominal pains, mouth soreness, insomnia, aches and pains. If I can help you in any way please let me know.....thank you so very much
    mags

    didn't loose hair
    No, I didn't loose my hair. I have had some hair thinning with every chemo regime I have been on (5FU, folfox, now xelox) but not too bad (noticeable to me, and my hairdresser, but not so much to others....)

    I know what you mean about the abdominal pain with xeloda -- I am experiencing that too. Manageable so far. I haven't noticed insomnia yet -- but I am a lousy sleeper under the best of circumstances!

    Let's keep in touch!!

    Tara
  • taraHK
    taraHK Member Posts: 1,952 Member
    #9
    dorookie said:

    Some Info Please
    Hi there,

    I am starting Xeloda today, all by its self. I was DX with stage 3 in Jun 07, did surgery, chemo, radiation and more chemo, cleared the beast for a few months then it came back in my lung in Nov 08, had surgery and now I am starting Xeloda. I have taken it before, back when I was on radiation. So its hard for me to tell which side effects were caused by what. I was taking a high dose, my onc is very aggressive, 4900 mg a day. That is also what I am taking now. I never got mouth sores, or any hand or feet peeling (knock on wood). I did have fatigue, sick to my stomach some, aches and pains, lots and lots of diarirra(sp, sorry bad speller) but I think you know what I mean. But I believe most of that was due to the radiation I was given, but cant really be sure.

    Any other info you might have would be great to hear.

    Thanks so much
    Beth

    probably radiation?
    Hi Beth,

    I haven't had any diarrhea with the xeloda (finishing 5th cycle now). I did have terrible diarrhea with radiation so hopefully yours was due to that....

    Good luck with the xeloda!

    Tara
  • dorookie
    dorookie Member Posts: 1,731 Member
    #10
    taraHK said:

    probably radiation?
    Hi Beth,

    I haven't had any diarrhea with the xeloda (finishing 5th cycle now). I did have terrible diarrhea with radiation so hopefully yours was due to that....

    Good luck with the xeloda!

    Tara

    Thanks
    I sure hope your right, the diarrhea kicked my butt last time...Thanks for the info Tara. Hope you are doing well.

    Beth
  • maglets
    maglets Member Posts: 2,576 Member
    #11
    taraHK said:

    didn't loose hair
    No, I didn't loose my hair. I have had some hair thinning with every chemo regime I have been on (5FU, folfox, now xelox) but not too bad (noticeable to me, and my hairdresser, but not so much to others....)

    I know what you mean about the abdominal pain with xeloda -- I am experiencing that too. Manageable so far. I haven't noticed insomnia yet -- but I am a lousy sleeper under the best of circumstances!

    Let's keep in touch!!

    Tara

    hair loss
    Hi Tara.....my oncologist implied I would lose my hair so I had started looking at wigs.....I'll just wait on that one. I lost my eyelashes and eyebrows on the 5FU....times like that make you wish you knew what to do with makeup:)

    oh yes please let's keep in touch....I have felt so alone....

    best regards,
    mags
  • maglets
    maglets Member Posts: 2,576 Member
    #12
    dorookie said:

    Thank you
    Thanks for the info. I will stay in touch, I am here all the time. I took my first dose this morning. I have to take it in the mornings and evenings. I feel like I am just waiting for the side effects to start, crazy huh? Well its the first day, and I am just going to take it easy today and see how things go. Do you remember about when you started feeling the side effects, like what day into your treatment? I have to take the pills for 14 days and then have a week off was this what you did too?

    Beth

    side effects
    Hi Beth...I know it's crazy like sitting around waiting for a bomb or an alarm to go off. I just looked up my xeloda notes and I started with supper on the first day and by the second day I had the stomach pain and I felt wiped. I was 14 days on and a week off and I started feeling rally crappy about day 18 till 20 then I would start to feel good just in time to start over!!

    best regards,
    mags
  • msccolon
    msccolon Member Posts: 1,917 Member
    #13
    maglets said:

    hair loss
    Hi Tara.....my oncologist implied I would lose my hair so I had started looking at wigs.....I'll just wait on that one. I lost my eyelashes and eyebrows on the 5FU....times like that make you wish you knew what to do with makeup:)

    oh yes please let's keep in touch....I have felt so alone....

    best regards,
    mags

    Look Good, Feel Better!
    Definitely look up the ACS in your area! They give you the makeup and lessons on how to apply it! It's a blessing! The makeup bags are designed for different skin tones, light, medium and dark. I'm actually somewhere between a medium and dark so they brought both and I picked from the colors available! You get everything from lotions, eyebrow pencils, eye liner, mascara (yea, like THAT's necessary when you lose you hair!), foundation, powder, eye shadow, lipstick, compact, you name it! And it's all the good stuff!
    mary
  • taraHK
    taraHK Member Posts: 1,952 Member
    #14
    maglets said:

    hair loss
    Hi Tara.....my oncologist implied I would lose my hair so I had started looking at wigs.....I'll just wait on that one. I lost my eyelashes and eyebrows on the 5FU....times like that make you wish you knew what to do with makeup:)

    oh yes please let's keep in touch....I have felt so alone....

    best regards,
    mags

    more on hair loss
    I bought a wig and never used it.

    I know what you mean about the eyelashes and eyebrows. Even when not on chemo I use eyebrow pencil -- but these days I struggle to find where I am supposed to be "painting"!! I lost my eyelashes in patches -- swell. Had to go a little heavier on the eyeliner! Ah, the joys of chemo -- things you never thought you'd experience. Nice to not have to shave my legs!

    All the best.......
    Tara

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