Neuropathy concerns

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kristasplace
kristasplace Member Posts: 957 Member
edited March 2014 in Colorectal Cancer #1
I am having horrible neuropathy. I just completed my second cycle of folfox last Thursday, and the neuropathy is not abating. They told me it should only be really bad the first three days, and that was true after my first cycle, but now...six days later, it is not getting any better. It's especially bad in my hands and feet, but i have it in my mouth (room temperature liquids sometimes aggravate it), and i have numbness around the outside of my mouth occassionally. Also, when i first take a bite of food, my jaws around my ears will hurt so bad i can hardly stand it. I try to keep buddled up, but heavy socks aren't helping. The only thing that seems to work is hot water, but that's only temporary. Has anyone else experienced bad neuropathy like this, and did it get worse as treatments went on? Will it go away when treatments end?

Thank you for any input!
Krista

Comments

  • pamness
    pamness Member Posts: 524 Member
    #2
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    I had neuropathy from folfox (it's the oxalyplatin). The jaw thing was particularly bad. After my third round it didn't go away in my hands or feet. They took me off the oxalyplatin after five rounds - I was on a very reduced dose. It went away in my hands fairly quickly but lasted in my feet for about 6 months. It's gone now.
  • nudgie
    nudgie Member Posts: 1,478 Member
    #3
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    I am assuming you are on the FOFLOX Chemo Regime of 5FU pump, lecovorin (sp?) and oxyplatin (sp?). If so, the oxy is what causes the sensitivity to cold items. During my treatments I drank and ate all foods and beverages at room temp or warmer. Wore gloves while getting anything out of the frig or freezer. Depending on your weather climate, gloves, scafs, etc for outdoors.

    The tingling is also from Oxy. My Onc reduced my dosage due to the effects, so you may want to discuss all side effects with your Onc Doc and Nurses to see what can be done.

    The jaw is another side effect, first bite syndrome. I also had this. My eventually went away after I finished.

    What I have heard and read is that the foot and hand neuropathy can get really bad due to the cumlative effect of the treatments, but since I had my oxy reduced, I did not get the full effect of the neuropahty.

    I hope this helps.
  • claud1951
    claud1951 Member Posts: 424 Member
    #4
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    Hi Krista,

    Are you taking Oxilplatin (sp)? If so, I only took it for 4 treatments and yes, this all happened to me.

    The mouth thing is true. I called it "flavor burst". It's like when you put food in your mouth (for the first time)it just "burst" behind on the sides of the tongue. It lasts maybe 3-4 seconds but Wow..it did hurt.

    Yes..Feet and hands got cold. I remember touching the top of my dresser (after just getting out of bed) and my fingertips started to feel like needles. Also, I had to warm the Tap water!

    I'd say it finally went away about 1 week after the treatment but it never got any better. I really think it gets worse.

    Had to end that treatment (I took this with xeloda). 4 treatments is all I could handle.

    I also got muscle spasms from it.

    I went on other chemo cocktails after that and did fine. Camptosar and the 5FU pump.

    Tell your doctor. See if they will lower the dose.

    My best to you. Let us know what happens

    Claudia
  • kristasplace
    kristasplace Member Posts: 957 Member
    #5
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    claud1951 said:

    Hi Krista,

    Are you taking Oxilplatin (sp)? If so, I only took it for 4 treatments and yes, this all happened to me.

    The mouth thing is true. I called it "flavor burst". It's like when you put food in your mouth (for the first time)it just "burst" behind on the sides of the tongue. It lasts maybe 3-4 seconds but Wow..it did hurt.

    Yes..Feet and hands got cold. I remember touching the top of my dresser (after just getting out of bed) and my fingertips started to feel like needles. Also, I had to warm the Tap water!

    I'd say it finally went away about 1 week after the treatment but it never got any better. I really think it gets worse.

    Had to end that treatment (I took this with xeloda). 4 treatments is all I could handle.

    I also got muscle spasms from it.

    I went on other chemo cocktails after that and did fine. Camptosar and the 5FU pump.

    Tell your doctor. See if they will lower the dose.

    My best to you. Let us know what happens

    Claudia

    Yes, it is oxaliplatin with the leucovorin and 5FU pump. I really don't want them to stop my treatments, or lower the dose, but if it gets much worse than this, i may not have a choice. My feet are KILLING me, and with the weather as it's been here in Ramona California, i just can't get warm enough long enough. I did get the muscle spasms in my mouth while they were administering the chemo, but it wasn't bad enough for me to complain about. I will keep you posted on how it goes.

    Thanks so much for all of your advise!
    Krista
  • Faith88
    Faith88 Member Posts: 55
    #6
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    kristasplace said:

    Yes, it is oxaliplatin with the leucovorin and 5FU pump. I really don't want them to stop my treatments, or lower the dose, but if it gets much worse than this, i may not have a choice. My feet are KILLING me, and with the weather as it's been here in Ramona California, i just can't get warm enough long enough. I did get the muscle spasms in my mouth while they were administering the chemo, but it wasn't bad enough for me to complain about. I will keep you posted on how it goes.

    Thanks so much for all of your advise!
    Krista

    Krista,
    I just wanted to add that my DH is suffering terribly with neuropathy to the point that I fear it may never go away. He finished his treatment in December and went through 11 treatments with the Oxaliplatin. I wish that he had stopped it sooner, it began getting bad about treatment #9 I think.
    The effects of this are cumulative and it got even worse after he was finished with chemo.
    I would strongly encourage you to speak to your oncologist about this. I believe this drug has only been on the market for about 5 years or so, and that many taking it are like test subjects, and data is being compiled from this as we are actively partaking in it.
    There are always side effects with any chemotherapy, and the drug is effective in what is is designed to do, but you have to weigh it all and consider the risk vs. your quality of life.
    I hope I didn't go on a tangent here but I just want to get the word out to people who are beginning this treatment and what we've been through and are still dealing with.
    -Faith88
  • kristasplace
    kristasplace Member Posts: 957 Member
    #7
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    Faith88 said:

    Krista,
    I just wanted to add that my DH is suffering terribly with neuropathy to the point that I fear it may never go away. He finished his treatment in December and went through 11 treatments with the Oxaliplatin. I wish that he had stopped it sooner, it began getting bad about treatment #9 I think.
    The effects of this are cumulative and it got even worse after he was finished with chemo.
    I would strongly encourage you to speak to your oncologist about this. I believe this drug has only been on the market for about 5 years or so, and that many taking it are like test subjects, and data is being compiled from this as we are actively partaking in it.
    There are always side effects with any chemotherapy, and the drug is effective in what is is designed to do, but you have to weigh it all and consider the risk vs. your quality of life.
    I hope I didn't go on a tangent here but I just want to get the word out to people who are beginning this treatment and what we've been through and are still dealing with.
    -Faith88

    Thank you, Faith! I will definitely talk to my onc about it on Thursday, and take his advise. I will be disappointed if i have to switch chemos. He wouldn't have prescribed me this one if it wasn't the best, and i want the best possible chance for survival. But i totally agree with you. Quality of life is very important, and we lose a lot of that as it is. I couldn't imagine this side effect being a permanent thing. It would be awful. I hope your DH is recovering from it, or at the very least able to have that important quality of life despite it.

    Thanks again for your help,
    Many hugs,
    Krista
  • claud1951
    claud1951 Member Posts: 424 Member
    #8
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    kristasplace said:

    Thank you, Faith! I will definitely talk to my onc about it on Thursday, and take his advise. I will be disappointed if i have to switch chemos. He wouldn't have prescribed me this one if it wasn't the best, and i want the best possible chance for survival. But i totally agree with you. Quality of life is very important, and we lose a lot of that as it is. I couldn't imagine this side effect being a permanent thing. It would be awful. I hope your DH is recovering from it, or at the very least able to have that important quality of life despite it.

    Thanks again for your help,
    Many hugs,
    Krista

    Krista

    As I had mentioned in my earlier reply to you, they did switch my treatment. Yes..Oxil is the newest thing and I wanted to make sure I got the best treatment. But.....I could handle only so much of this stuf..

    Wanted to let you know, in October (of last year) I finished chemo (took the rest of the 6 treatments with different chemo). As of Dec of 07, I was NED (No Evidence of Disease) and am feeling great! I was stage 3.

    Good vibes coming your way!
    Claudia
  • KFalvey
    KFalvey Member Posts: 118 Member
    #9
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    Hi Krista,

    I took FOLFOX4 3 years ago, 11 treatments included Oxaliplatin and the numbness effects do get worse the longer you take it and sometimes increase afterward for at least 6 months. Mine got better in the hands 8 months after finishing chemo, but I still have it in the feet today (not as bad, but still not normal).. The first bite pain will not get any worse and will go away as soon as you finish chemo. I didn't always have that problem every time. I can't say it was worth it either because I had a recurrance 6 months later. I was Stage 3-T3N1M0. I wish I'd of stopped it sooner.
    As it warms up toward summer, it should get better. Good Luck.
    Kandy
  • Mickeyw
    Mickeyw Member Posts: 28
    #10
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    Hi Krista
    I finished my FOLFOX regimen in July of 2007. All during the 12 treatments the sensitivity to cold would last about 4 days then go away. I noticed the numbness in my hands and bottoms of my feet began to hang around after about 5 months, so the oncon stopped the oxaliplatin for the last two treatments. It is about 10 to 11 months out now and I still have the numbness in ends of my fingers and bottoms of feet. I have taken the vitamin B6 all along and it hasn't helped much, if any at all. I am trying Neuratin for a month to see if that helps. I have learned to live with it. I still play the electric bass in our church choir. I like to go barefooted at home since the arches of my feet are not numb, and I like to feel the carpet. Our prayers are with you. I also have numbness in the bottom half of my right ear from surgery where they took a benign Worthin's tumor out of my salivary gland. Lot's of facial nerves in that area.

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