taxol

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mayo
mayo Member Posts: 12
edited March 2014 in Breast Cancer #1
just wondering if anyone else has experienced the side effects that i have while recieving taxol. i get the most painful neuropathy(severe pain in feet) for about a week after treatment and then always lingers into a mild pain. when at its worst i can only describe it as feeling as though my feet have been severly frost bitten and started to thaw. to combat this prob my onco put me on nortriptyline( actuallly an antidepressant) which i refused to take at first but then conceeded, helps maybe a little

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  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
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    Mine was the 'taxol tingles'
    Both my hands and feet would feel like they had been asleep, and were tingling to wake up.

    I found that 3 things helped...

    One, believe it or not, was to keep them busy. Like chatting on CSN, for instance, that kept the fingers moving.

    Two, drank LOTS of fluids...both during infusions (I asked for an extra bag of IV fluids, it took more time, I had to pee ALOT), and generally all the time. My tingles got more noticable when I wasn't drinking enough fluids.

    Three, Vitamin B6. Ask your onc about this one, sometimes they don't want you using this during treatment....I drank Propel sports water. Tasty and contains B-complex.

    3-plus years out (actually, it happened in the first year) I have NO residual neuropathy. And this included that from the 5FU/carboplatin chemo (known for permanent neuropathy) I got for my first cancer...

    Hugs, Kathi
  • mayo
    mayo Member Posts: 12
    #3
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    KathiM said:

    Mine was the 'taxol tingles'
    Both my hands and feet would feel like they had been asleep, and were tingling to wake up.

    I found that 3 things helped...

    One, believe it or not, was to keep them busy. Like chatting on CSN, for instance, that kept the fingers moving.

    Two, drank LOTS of fluids...both during infusions (I asked for an extra bag of IV fluids, it took more time, I had to pee ALOT), and generally all the time. My tingles got more noticable when I wasn't drinking enough fluids.

    Three, Vitamin B6. Ask your onc about this one, sometimes they don't want you using this during treatment....I drank Propel sports water. Tasty and contains B-complex.

    3-plus years out (actually, it happened in the first year) I have NO residual neuropathy. And this included that from the 5FU/carboplatin chemo (known for permanent neuropathy) I got for my first cancer...

    Hugs, Kathi

    thank Kathi
    you are so
    thank Kathi

    you are so strong and giving back so much especially after battling cancer not once but twice. you know before i was diagnosed with breast cancer i was suppose to havve a colonscopy because my mother had rectal cancer 4 years ago.......then breast cancer hit and i havent been able to focus on anything else and i actually thought what are the chances i could get both and soo have put the colonoscopy completely out of mind. you have made me rethink that choice too... thanks for being so strone=g
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
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    mayo said:

    thank Kathi
    you are so
    thank Kathi

    you are so strong and giving back so much especially after battling cancer not once but twice. you know before i was diagnosed with breast cancer i was suppose to havve a colonscopy because my mother had rectal cancer 4 years ago.......then breast cancer hit and i havent been able to focus on anything else and i actually thought what are the chances i could get both and soo have put the colonoscopy completely out of mind. you have made me rethink that choice too... thanks for being so strone=g

    You are so welcome...
    Yeah, it was crazy....I actually had the rectal cancer (stage III) first, and the PET scan to see where it had gone found the breast cancer...totally different cancer...

    MY daughter is VERY pleased that she will have both a mammogram starting no later than age 30, and a colonoscopy starting at age 30...I just told her "Well, your gene pool is a septic tank". "Thanks, mom", she said....

    Hugs, Kathi
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #5
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    Hi Mayo, Gabapentin is used
    Hi Mayo, Gabapentin is used for neuropathy as well and also helps with sleeping and hot flashes. I don't know if you're finished with your taxol or not, but I had read somewhere that women were putting something cold on their heads to prevent hair loss. I know that's not what you were looking for, but there is some info about keeping your feet cold at least during the infusion, maybe for 1 day or so, to prevent the damage.

    That's of course if KathM's remedies don't work, which certainly sound a lot simpler than walking around with a cold pack on your feet or head.

    Ask your onc about gabapentin (neurontin), I think it would work better than nortriptyline.

    Best of luck to you
    jan
  • base61ball
    base61ball Member Posts: 125
    #6
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    phoenixrising said:

    Hi Mayo, Gabapentin is used
    Hi Mayo, Gabapentin is used for neuropathy as well and also helps with sleeping and hot flashes. I don't know if you're finished with your taxol or not, but I had read somewhere that women were putting something cold on their heads to prevent hair loss. I know that's not what you were looking for, but there is some info about keeping your feet cold at least during the infusion, maybe for 1 day or so, to prevent the damage.

    That's of course if KathM's remedies don't work, which certainly sound a lot simpler than walking around with a cold pack on your feet or head.

    Ask your onc about gabapentin (neurontin), I think it would work better than nortriptyline.

    Best of luck to you
    jan

    Neuropathy
    my oncologist told me to take two teaspoons of pure glutamine mixed in water or juice three times per day day of infusion and for three days after. It helps.
  • mayo
    mayo Member Posts: 12
    #7
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    phoenixrising said:

    Hi Mayo, Gabapentin is used
    Hi Mayo, Gabapentin is used for neuropathy as well and also helps with sleeping and hot flashes. I don't know if you're finished with your taxol or not, but I had read somewhere that women were putting something cold on their heads to prevent hair loss. I know that's not what you were looking for, but there is some info about keeping your feet cold at least during the infusion, maybe for 1 day or so, to prevent the damage.

    That's of course if KathM's remedies don't work, which certainly sound a lot simpler than walking around with a cold pack on your feet or head.

    Ask your onc about gabapentin (neurontin), I think it would work better than nortriptyline.

    Best of luck to you
    jan

    neurotin
    actually i did ask about the neurotin because i was more familar with it, however my onc said that it takes 3 months to reach theraputic levels and by then i would be finished with the taxol. thats why he went with the nortriptlene. i will try whatever anyone suggest because my feet just kill me....its much more than just a tingle. thanks for the advise
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #8
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    mayo said:

    neurotin
    actually i did ask about the neurotin because i was more familar with it, however my onc said that it takes 3 months to reach theraputic levels and by then i would be finished with the taxol. thats why he went with the nortriptlene. i will try whatever anyone suggest because my feet just kill me....its much more than just a tingle. thanks for the advise

    Wow, that's a long time to
    Wow, that's a long time to wait for something to work. I wonder what therapeutic level he is thinking of. Oh well, you know what they say...........Doc knows best. Or is Father????
    Wasn't that a TV show?

    Sorry that didn't work out. I am pretty much taking the lowest dosage and it works fine and fast.

    I had severe bone pain all over so didn't notice my feet till a few months after tx. They eventually gave me morphine at that time.

    Maybe for your next infusion try the water, B6 and Glutamine and in the meantime perhaps some pain meds??

    This is something I copied from another site:

    Fran, if that burning feeling in your feet is due to hand/foot syndrome (HFS), which can be caused by Taxol, you don't want to be massaging your feet.

    Here's a website that provides a good explanation of HFS and what to do about it. This site does not mention Taxol as a possible cause, but I've seen other sites and articles that implicate both the taxanes (Taxol and Taxotere) in HFS: http://www.chemocare.com/managing/handfoot_syndrome.asp

    Generally, what you might try, to reduce the chance of developing HFS and to minimize the pain and tissue damage when it does occur, is keep your feet cool (a bag of frozen peas works well for this); keep your feet elevated (good excuse to lounge in that recliner); don't do anything that increases blood flow to your feet (rubbing, deep massage, and even walking can be a problem); and apply a soothing, cooling, emollient-type cream (gently).

    For a soothing lotion, some of us have liked "Udderly Smooth Udder Cream". My favorite version of that product was "Udderly Smooth Extra Care Cream--Unscented, with Urea." It's available at some pharmacies, or on-line at http://www.uddercream.com/ONCOLOGY.HTML).

    Hope you find something that works.

    Big Hug

    jan

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