Oxaliplatin Side Effects

abrub
abrub Member Posts: 2,174 Member
edited March 2014 in Colorectal Cancer #1
Have any of you had uncontrollable teeth chattering and/or shivering as a side effect to the Oxaliplatin? Xeloda?

A friend has had this, and her drs are totally unaware of this as a side effect. I know she'd like to know she's not the only one out there.

Thanks.

Comments

  • Jaylo969
    Jaylo969 Member Posts: 824
    Yes I have
    had the shivering...no teeth chattering.I haven't been warm since October and surgery. Sometimes though it feels like a frigid wind hits me right in my upper back ( between my wings...whatever that area is called )and I start shivering uncontrollably.My blood is good so I can rule that out.

    I have been on Oxi and now I'm on Xeloda. Cold with both, but have to admit I was shivering before I started chemo. Last year I was a hot mama, sweating all the time and hot flashing. What a difference a year can make.

    -Pat
  • RickMurtagh
    RickMurtagh Member Posts: 586
    Jaylo969 said:

    Yes I have
    had the shivering...no teeth chattering.I haven't been warm since October and surgery. Sometimes though it feels like a frigid wind hits me right in my upper back ( between my wings...whatever that area is called )and I start shivering uncontrollably.My blood is good so I can rule that out.

    I have been on Oxi and now I'm on Xeloda. Cold with both, but have to admit I was shivering before I started chemo. Last year I was a hot mama, sweating all the time and hot flashing. What a difference a year can make.

    -Pat

    even now
    I finished chemo at the end of January and I still get the chills - mostly at night when I get undressed for bed. it got somewhat better as I used to hardly get undressed for bed - I had the chills for twenty or more minutes every night. Sometimes I fell asleep shivering.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    Yes
    I alternate between hot sweats and cold sweats while on the pump, and for a few more days. I've had a few instances of SEVERE shivering that will not stop. Worse than I've ever had in my life - even with really bad fevers.

    I'm on FOLFOX.
  • maglets
    maglets Member Posts: 2,576

    Yes
    I alternate between hot sweats and cold sweats while on the pump, and for a few more days. I've had a few instances of SEVERE shivering that will not stop. Worse than I've ever had in my life - even with really bad fevers.

    I'm on FOLFOX.

    definitely
    yes and although I have to say my oxy was in winter and then spring ...I had a lot of shivering...don't you think it's strange that on this forum we can find a common thread, a common side effect and the oncs haven't heard of it....it happens more than once....

    more reason to stay connected....:) :)

    mags
  • abrub
    abrub Member Posts: 2,174 Member
    maglets said:

    definitely
    yes and although I have to say my oxy was in winter and then spring ...I had a lot of shivering...don't you think it's strange that on this forum we can find a common thread, a common side effect and the oncs haven't heard of it....it happens more than once....

    more reason to stay connected....:) :)

    mags

    I agree
    Although I didn't have the shivering/chattering, I had a rare side effect of severe jaw pain on eating, and I've found that several people here have reported that as well. My dr had heard that some jaw pain was possible - he never heard of a case like mine. Elsewhere on this forum, I've read of others who suffered just as much as I did.
  • mark440
    mark440 Member Posts: 63
    abrub said:

    I agree
    Although I didn't have the shivering/chattering, I had a rare side effect of severe jaw pain on eating, and I've found that several people here have reported that as well. My dr had heard that some jaw pain was possible - he never heard of a case like mine. Elsewhere on this forum, I've read of others who suffered just as much as I did.

    oxy
    Iam on my second treatment as I write... the jaw spasms on the first bite of food feels like I just stuck my tounge in a light socket!!! I hope it isnt like that for the whole 6 months... Iam cold and my fingers and toes get cold very easy... no teeth chattering tho...
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    The Gift that Keeps on Giving...
    Yes indeed, all that and a bag of chips:)

    No teeth chattering that I can recall. But the jaw spasms on the 1st or 2nd bite were classics, the neuropathy is universal, the cold drink sensations if you try that after treatment are very unique, and that yucky feeling that makes you need to sleep certainly is consistent.

    And the cold chills are legendary, or they should be. Down here in Texas, we are known for might hot summers for months on end. I had stopped the Oxy about 8 months before the hot months came. I remember vividly having to spend the summer under a blanket to feel remotely comfortable. It was especially bad on my kneecaps, the A/C or even a breeze from the ceiling fan, would just make my legs hurt so bad, until I put a blanket over them.

    That has never happened before Oxy! I could not wear shorts the entire summer, was actually in sweat pants in the heat of summer. Sometimes, I do wonder how docs do not share with their colleagues what they hear from their patients. Like Mags said, good thing we can talk to one another here.

    I was just getting ready to respond to a new poster "Dance" and she had read a post where I talked about Magnesium Sulfate helping her cold sensations with cold liquids and things. I offer those 2 words to you as well. Ask your onc if they can infuse Magnesium Sulfate with your Oxy.

    It does not work for everybody, but if it works for you, you will be so happy and it will change the course of your treatment. You will know if it works right away. I was literally able to walk out of infusion and drink something cold instantly, no 5-7 day waiting period.

    Ask your onc about it, it's worth a try, and can't hurt anything. If it works, your Oxy treatments will become infinitely more bearable and you'll get through them better.

    Nice to meet you BTW - I've seen your posts but have not had the opportunity to drop in and say Hi.

    Keep us all posted!

    -Craig
  • maglets
    maglets Member Posts: 2,576
    Sundanceh said:

    The Gift that Keeps on Giving...
    Yes indeed, all that and a bag of chips:)

    No teeth chattering that I can recall. But the jaw spasms on the 1st or 2nd bite were classics, the neuropathy is universal, the cold drink sensations if you try that after treatment are very unique, and that yucky feeling that makes you need to sleep certainly is consistent.

    And the cold chills are legendary, or they should be. Down here in Texas, we are known for might hot summers for months on end. I had stopped the Oxy about 8 months before the hot months came. I remember vividly having to spend the summer under a blanket to feel remotely comfortable. It was especially bad on my kneecaps, the A/C or even a breeze from the ceiling fan, would just make my legs hurt so bad, until I put a blanket over them.

    That has never happened before Oxy! I could not wear shorts the entire summer, was actually in sweat pants in the heat of summer. Sometimes, I do wonder how docs do not share with their colleagues what they hear from their patients. Like Mags said, good thing we can talk to one another here.

    I was just getting ready to respond to a new poster "Dance" and she had read a post where I talked about Magnesium Sulfate helping her cold sensations with cold liquids and things. I offer those 2 words to you as well. Ask your onc if they can infuse Magnesium Sulfate with your Oxy.

    It does not work for everybody, but if it works for you, you will be so happy and it will change the course of your treatment. You will know if it works right away. I was literally able to walk out of infusion and drink something cold instantly, no 5-7 day waiting period.

    Ask your onc about it, it's worth a try, and can't hurt anything. If it works, your Oxy treatments will become infinitely more bearable and you'll get through them better.

    Nice to meet you BTW - I've seen your posts but have not had the opportunity to drop in and say Hi.

    Keep us all posted!

    -Craig

    ahhh
    ahhhh I never got a bag of chips.....she said pouting :)

    mags

    just as an aside to folks getting started on oxy...I really found it worth while to keep a brief journal each month of side effects. I always thought I would remember them but with chemo brain I didn't. I would take these notes to the hospital on infusion day and discuss them with my chemo nurse....i found it really helped...
  • just4Brooks
    just4Brooks Member Posts: 980
    Oxy is one bad MF!!!
    I was one that oxy poison when I went through chemo. I'd get so cold I'd just shake like a leaf. The one thing that helped me was a steaming hot bath around 3 to 5 times a day. I also went down a got a bed warmer to put under my sheet. It worked wonders to keep me warm at night. My Ugg boots helped too!!!

    I'm now 3 months out from being free from chemo. I almost never get that cold shaky thing anymore. My feet are still numb and I do get thet leg pain at night. But it's great to be alive!

    Brooks
  • zenmonk
    zenmonk Member Posts: 198
    shivering
    I had the shivers like crazy. They had to give me something a couple of times to stop it. No issue with my teeth though.
  • Patteee
    Patteee Member Posts: 945
    I never did- lots of issues
    I never did- lots of issues on oxy, never that one! I do remember a woman next to me half way into her chemo treatment, started chattering and shaking. They STAT called the oncologist back and he gave her a shot of demarol. That helped a lot. I remember thinking what a strange reaction that was.
  • Shayenne
    Shayenne Member Posts: 2,342
    Patteee said:

    I never did- lots of issues
    I never did- lots of issues on oxy, never that one! I do remember a woman next to me half way into her chemo treatment, started chattering and shaking. They STAT called the oncologist back and he gave her a shot of demarol. That helped a lot. I remember thinking what a strange reaction that was.

    I Just
    Did my first treatment last week, go back Wednesday for my 2nd treatment. I was just now able to even shower, because I was afraid of the water hurting my body, I was washing radishes and strawberries a few days ago, when my fingers started feeling like they were burning, like really prickly, I couldn't even wash my dishes, as even in hot water it felt like pins and needles and thought, wow...I'm scared for water to even go on me now..So I just braved it, and it was fine, I felt it like a few days AFTER I was disconnected, when I thought those sensations were supposed to stop, but the fatigue is a killer, I just was able to push myself to enjoy the beautiful 85 degree weather we were having, taking my kids out, and just walking around the stores, I feel better now, but wow..

    I don't think I can do 3 more of these (my onc wants 4), I'm scared to death of getting worse effects now, and really am scared to do my 2nd treatment. The nurse from chemo called me today to see how my first treatment went, and I told her, the fatigue just about killed me, I had absolutely no energy for a week! This will be no picnic, and told her I doubt I will continue this.

    Hugsss!
    ~Donna
  • just4Brooks
    just4Brooks Member Posts: 980
    Shayenne said:

    I Just
    Did my first treatment last week, go back Wednesday for my 2nd treatment. I was just now able to even shower, because I was afraid of the water hurting my body, I was washing radishes and strawberries a few days ago, when my fingers started feeling like they were burning, like really prickly, I couldn't even wash my dishes, as even in hot water it felt like pins and needles and thought, wow...I'm scared for water to even go on me now..So I just braved it, and it was fine, I felt it like a few days AFTER I was disconnected, when I thought those sensations were supposed to stop, but the fatigue is a killer, I just was able to push myself to enjoy the beautiful 85 degree weather we were having, taking my kids out, and just walking around the stores, I feel better now, but wow..

    I don't think I can do 3 more of these (my onc wants 4), I'm scared to death of getting worse effects now, and really am scared to do my 2nd treatment. The nurse from chemo called me today to see how my first treatment went, and I told her, the fatigue just about killed me, I had absolutely no energy for a week! This will be no picnic, and told her I doubt I will continue this.

    Hugsss!
    ~Donna

    yep
    donna ~ Welcome to Oxy land. I remember all too well. If I can do it so can you!!

    Brooks
  • Hovea
    Hovea Member Posts: 15
    Patteee said:

    I never did- lots of issues
    I never did- lots of issues on oxy, never that one! I do remember a woman next to me half way into her chemo treatment, started chattering and shaking. They STAT called the oncologist back and he gave her a shot of demarol. That helped a lot. I remember thinking what a strange reaction that was.

    "CHATTERING TEETH"
    Thank you, Pateee for your input. At least you have seen someone with this sympton and that is a start.
  • Hovea
    Hovea Member Posts: 15
    Sundanceh said:

    The Gift that Keeps on Giving...
    Yes indeed, all that and a bag of chips:)

    No teeth chattering that I can recall. But the jaw spasms on the 1st or 2nd bite were classics, the neuropathy is universal, the cold drink sensations if you try that after treatment are very unique, and that yucky feeling that makes you need to sleep certainly is consistent.

    And the cold chills are legendary, or they should be. Down here in Texas, we are known for might hot summers for months on end. I had stopped the Oxy about 8 months before the hot months came. I remember vividly having to spend the summer under a blanket to feel remotely comfortable. It was especially bad on my kneecaps, the A/C or even a breeze from the ceiling fan, would just make my legs hurt so bad, until I put a blanket over them.

    That has never happened before Oxy! I could not wear shorts the entire summer, was actually in sweat pants in the heat of summer. Sometimes, I do wonder how docs do not share with their colleagues what they hear from their patients. Like Mags said, good thing we can talk to one another here.

    I was just getting ready to respond to a new poster "Dance" and she had read a post where I talked about Magnesium Sulfate helping her cold sensations with cold liquids and things. I offer those 2 words to you as well. Ask your onc if they can infuse Magnesium Sulfate with your Oxy.

    It does not work for everybody, but if it works for you, you will be so happy and it will change the course of your treatment. You will know if it works right away. I was literally able to walk out of infusion and drink something cold instantly, no 5-7 day waiting period.

    Ask your onc about it, it's worth a try, and can't hurt anything. If it works, your Oxy treatments will become infinitely more bearable and you'll get through them better.

    Nice to meet you BTW - I've seen your posts but have not had the opportunity to drop in and say Hi.

    Keep us all posted!

    -Craig

    MAGNESIUM
    I have an infusion of Magnesium during my treatment and I also take MAG-SUP daily. It helps to minimise or stop leg cramps at night. I ran out last week and thought maybe I didn't need to take them anymore but within 3 nights the cramps recommenced and I started back on the Mag.
  • khl8
    khl8 Member Posts: 807
    Shayenne said:

    I Just
    Did my first treatment last week, go back Wednesday for my 2nd treatment. I was just now able to even shower, because I was afraid of the water hurting my body, I was washing radishes and strawberries a few days ago, when my fingers started feeling like they were burning, like really prickly, I couldn't even wash my dishes, as even in hot water it felt like pins and needles and thought, wow...I'm scared for water to even go on me now..So I just braved it, and it was fine, I felt it like a few days AFTER I was disconnected, when I thought those sensations were supposed to stop, but the fatigue is a killer, I just was able to push myself to enjoy the beautiful 85 degree weather we were having, taking my kids out, and just walking around the stores, I feel better now, but wow..

    I don't think I can do 3 more of these (my onc wants 4), I'm scared to death of getting worse effects now, and really am scared to do my 2nd treatment. The nurse from chemo called me today to see how my first treatment went, and I told her, the fatigue just about killed me, I had absolutely no energy for a week! This will be no picnic, and told her I doubt I will continue this.

    Hugsss!
    ~Donna

    Donna,
    hang in there don't

    Donna,
    hang in there don't give up! I made it through 9 treatments and while it was no picnic it was tolerable. You will feel the effects for days then they will go away, but hell if it can possible do you good in the long run, it is worth it!
    Kathy
  • TxKayaker
    TxKayaker Member Posts: 176
    Shayenne said:

    I Just
    Did my first treatment last week, go back Wednesday for my 2nd treatment. I was just now able to even shower, because I was afraid of the water hurting my body, I was washing radishes and strawberries a few days ago, when my fingers started feeling like they were burning, like really prickly, I couldn't even wash my dishes, as even in hot water it felt like pins and needles and thought, wow...I'm scared for water to even go on me now..So I just braved it, and it was fine, I felt it like a few days AFTER I was disconnected, when I thought those sensations were supposed to stop, but the fatigue is a killer, I just was able to push myself to enjoy the beautiful 85 degree weather we were having, taking my kids out, and just walking around the stores, I feel better now, but wow..

    I don't think I can do 3 more of these (my onc wants 4), I'm scared to death of getting worse effects now, and really am scared to do my 2nd treatment. The nurse from chemo called me today to see how my first treatment went, and I told her, the fatigue just about killed me, I had absolutely no energy for a week! This will be no picnic, and told her I doubt I will continue this.

    Hugsss!
    ~Donna

    Hang in there I made the 12
    Hang in there I made the 12 -- still no picnic but it's doable.
    Best wishes
    Mike
  • coloCan
    coloCan Member Posts: 1,944 Member
    Hovea said:

    "CHATTERING TEETH"
    Thank you, Pateee for your input. At least you have seen someone with this sympton and that is a start.

    Thats what did me in: The Evil "o"
    Had first attack of unstoppable teeth clattering, uncontrollable body/bone shaking,nonstop sweating, freezing one second, burning up the next fit after final preop oxi dose. Postop, 4th dose got to me, night of 12/25 thru 12/27, 3 separate attacks, first one I couldn't catch my breath. Each lasted about an hour (seemed like forever; refused to go to a hosp). since onc deleted the oxy from FOLFOX, no such problem but this experience terrified me....steve
  • herdizziness
    herdizziness Member Posts: 3,624
    abrub said:

    I agree
    Although I didn't have the shivering/chattering, I had a rare side effect of severe jaw pain on eating, and I've found that several people here have reported that as well. My dr had heard that some jaw pain was possible - he never heard of a case like mine. Elsewhere on this forum, I've read of others who suffered just as much as I did.

    I too, have the jaw pain,
    I too, have the jaw pain, but it only hurts for the first few "chews", wow is it painful though. Also, crying hurts too. Takes a week or so for the pain of the jaws and crying (I quit the crying thing, so not worth the pain, start the brain on "happy thoughts" "happy thoughts", but still going to keep on chewing LOL) to go away, then I can chew and cry if I want to, without the pain.
  • impactzone
    impactzone Member Posts: 539 Member
    Absolutely chills..I loved
    Absolutely chills..I loved the hot water bottle..
    Chip