Is there anyone who has not had long term issues with the Neuropathy from Oxaliplatin?

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polarprincess
polarprincess Member Posts: 202
edited March 2014 in Colorectal Cancer #1
I am only on cycle 4 and already having issues. It went away completely after cycles 1 and 2, then cycle 3 i had a reduced dose and i hardly got it at all. Cycle 4 now, I got it back at 100% and it has been awful. It makes me crazy. I could not live with this the rest of my life and stay sane. I love to bake and cook, and i can't do that. I am a crafter and sewer, and do medical charting for a living... it would severely affect my quality of life. The drug offers like a 5-7 % benefit. I just question whether it is worth it for the resulting side effects. I belong to another forum and there is a discussion there on this and i am just trying to find anyone who did not have any lasting issues.. i only have to get 8 cycles of it, but someone on there only got 9 and they are having issues.. it scares me. I have to go back on monday for treatment 5 and need to decide if i want to D/C this drug or not. By the way I am stage 3a.. basically was stage 1 except for 1 stupid node.

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  • lisa42
    lisa42 Member Posts: 3,625 Member
    #2
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    neuropathy almost gone!
    Hi,
    I had neuropathy from the oxaliplatin and the cisplatin I later took. My neuropathy in hands and feet was awful. I couldn't hold a pen, I kept dropping things, couldn't clap cause it felt so bad, and my feet felt really terrible- very sensitive and felt like cardboard was stuffed between all my toes and all along the bottom of my feet. Good news... 10 months later- my hands are back to 100% (well maybe 95%) normal!! 10 months may sound like a long time to you, but it was a gradual process over this time period. It was terrible for the first 3 or 4 months, then it started getting gradually better. I was clapping after a show a couple of weeks ago and realized I didn't get that tingly icky feeling anymore! The major part of it subsided after 4-5 months, and it was the tingling in the very tips of my fingers that persisted for a while. My feet still have issues, but they're also much, much better than they were & I still have hope they'll continue to get better. I never took any prescription drugs for it. I talked w/ my onc. about it at the beginning, but opted to not when I heard of some of the side effects a couple of people had from those (fuzzy brain- I didn't need any more of that!)
    What I did do was take a combo of B-6, B-12, and L-glutamine. I can't tell you for sure if it would have gotten better on its own anyhow, but I'm pretty sure that combo did help me.
    Important also is to let your oncologist know you're having issues. I've been told that it can be permanent if you let it go too long. What is too long, I'm not sure.
    Best wishes to you-
    Lisa
  • tiny one
    tiny one Member Posts: 465 Member
    #3
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    oxiplatin
    I received oxiplatin for 6 months for stage 3 colon cancer. I would get this twice a month and have a pump on me for 2 days with slow release. My last treatment was Halloween of 2007. The neuropathy is completely gone in my hands. Just a slight tingling remains in my feet. I was very active while I received this course of chemo. I couldn't change my earrings for quite a while. I had to be careful when stepping into the tub. The sensitivity to cold was hard to deal with also.
  • msccolon
    msccolon Member Posts: 1,917 Member
    #4
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    This is why I stopped my oxaliplatin the first go round
    Since I make a living on the computer, my ability to use my hands was very important and my doc was aware of that. He kept a close eye on it and when after 3 treatments I was unable to use a mouse due to muscle spasms in my hands, he stopped the oxi. I don't know if i would be willing to try it again in the future; when my recurrent tumor was tested, it showed a low tolerance to oxi so would be a good drug to try. It also showed a low tolerance to CPT-11, which is what we have used both times when I went back into chemo since my recurrence. Discuss with your doctor, if you haven't already, how important your hands are and how concerned you are with losing the ability to make a living. Treatment for cancer is a delicate quality of life balance; it's up to you to decide what makes living worth it.
    mary
  • kmygil
    kmygil Member Posts: 876 Member
    #5
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    Good news first
    Hi. The good news is that it DOES abate. Sometimes you may have to help that along or keep it stable with meds. I use Gabapentin. My neuropathy in hands and legs was very severe which was depressing as my stress relief comes playing the piano. Fortunately, it gradually abated. Now only the balls, heels and underside of my toes are numb and just a very tiny spot on each of my finger pads. This is huge since originally, I felt like I was walking on glass and my legs were numb up to my knees. The hands were numb to the wrist.

    The bad news is that it will take time. I was also on "insurance" chemo and finished 9 out of 12 rounds. At that point the side effects sort of negated any benefit the chemo could give me. I did lie once because I didn't want to delay chemo again, so I told them I had no neuropathy when indeed I had severe neuropathy. I think that's what threw it into such a severe state. (That'll teach me to lie!) So be honest about what's going on. If you have to delay a week or two, so be it.

    Praying for you,
    Kirsten
  • taraHK
    taraHK Member Posts: 1,952 Member
    #6
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    kmygil said:

    Good news first
    Hi. The good news is that it DOES abate. Sometimes you may have to help that along or keep it stable with meds. I use Gabapentin. My neuropathy in hands and legs was very severe which was depressing as my stress relief comes playing the piano. Fortunately, it gradually abated. Now only the balls, heels and underside of my toes are numb and just a very tiny spot on each of my finger pads. This is huge since originally, I felt like I was walking on glass and my legs were numb up to my knees. The hands were numb to the wrist.

    The bad news is that it will take time. I was also on "insurance" chemo and finished 9 out of 12 rounds. At that point the side effects sort of negated any benefit the chemo could give me. I did lie once because I didn't want to delay chemo again, so I told them I had no neuropathy when indeed I had severe neuropathy. I think that's what threw it into such a severe state. (That'll teach me to lie!) So be honest about what's going on. If you have to delay a week or two, so be it.

    Praying for you,
    Kirsten

    went away
    I did two rounds (12 cycles first time, 11 the second). Both times side effects disappeared completely (well, maybe 95% in toes). Took almost a year.

    Tara
  • pamness
    pamness Member Posts: 524 Member
    #7
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    My diagnoses and yours were basically the same.
    I was scheduled for 8 rounds of folfox. I had trouble with the oxaliplatin starting with my first treatment - though not with the neuropathy. My dose was lowered and by my fifth round the tingling in my fingers and toes had been there for a month - they gave me a one week break. So I went three weeks between treatments five and six. When the time came for my sixth round the neuropathy was still there. They took me off the oxaliplatin and I finished with the 5fu and leucovorin, radiaiton and 5fu, etc. My oncologist didn't think a lifetime of neuropathy was worth the trade off in a slight reduction of the risk of return. I was willing to continue, but when he explained the risks vs. rewards. I skipped the oxaliplatin and settled for 5 out of
    As it was explained to me, they know how much oxaliplatin is enough - the maximum most people can tolerate. No one wants to volunteer for the trial about how "little" is enough. They will study people like me, who didn't finish and at some time have more information.

    It is a complicated decision, no doubt, but you do have options, and it is a decision you probably need to make in conjunction with your oncologist.

    I am currently 16 mos. ned.

    Good news the neuropathy in my hands went away within a month or so. In my feet it took 6 to 8 months, but it wasn't that bad so when it was totally gone, I didn't really realize it, until I thought about it.

    All the best,

    Pam
  • polarprincess
    polarprincess Member Posts: 202
    #8
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    thanks
    Thanks everyone for your responses.. this helps alot..makes me feel much better. I will definitely have to discuss this with my doctor and go from there. I am also glad to hear someone else was just scheduled for 8 chemo treatments rather than the 12. I still worry sometimes about whether i am getting 'enough" You are all great!
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
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    I had a complete recovery...
    From both the neuropathy from the oxy, AND from the Adriamycin and Taxol for the breast cancer. I drank loads of fluid both during treatment (4 quarts day before, day of, and day after) and for a year after all chemo finished, anytime I felt dehydrated.

    I still drink Propel with the B-complex. My nurse said that B6 helps, but shouldn't be started till after all treatment.

    Hugs, Kathi
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #10
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    KathiM said:

    I had a complete recovery...
    From both the neuropathy from the oxy, AND from the Adriamycin and Taxol for the breast cancer. I drank loads of fluid both during treatment (4 quarts day before, day of, and day after) and for a year after all chemo finished, anytime I felt dehydrated.

    I still drink Propel with the B-complex. My nurse said that B6 helps, but shouldn't be started till after all treatment.

    Hugs, Kathi

    5 to 7%...is wrong, its higher than that.......
    5% was given to me from my onc about how much it raised my reoccurance rate percentage. Yeah I said then why for 5% am I going through hell and back. My people at Vandy tells me that an oncologist lowballs that figure....He tells me that it is more like 15-20% more chance in percent of non reoccurence. So that took me from an 65% chance to a 80-85% chance of non reoccur.......Now its worth puking in my shoes every other week for that type of percentage....
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #11
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    Buzzard said:

    5 to 7%...is wrong, its higher than that.......
    5% was given to me from my onc about how much it raised my reoccurance rate percentage. Yeah I said then why for 5% am I going through hell and back. My people at Vandy tells me that an oncologist lowballs that figure....He tells me that it is more like 15-20% more chance in percent of non reoccurence. So that took me from an 65% chance to a 80-85% chance of non reoccur.......Now its worth puking in my shoes every other week for that type of percentage....

    Good percentages, Buzz
    That's interesting about the percentages, Buzz... and definitely worth being sick for the short term to get the advantage of those percentages. Were you meaning just Oxaliplatin, or chemo treatments in general?

    I didn't find the Oxi made me sick... but I certainly did get the neuropathy in my feet. Nothing in my hands, or if I did, then it isn't something I am remembering now. I finished my chemo at the end of Oct 2007 and to this day I still have bad neuropathy in both feet. When I go to bed at night, the arthritis in the knees is relieved, but the neuropathy in both feet kick in -- toes, heels, tops of feet that go right up both shins. During the day, the neuropathy makes it awkward when walking because I don't have full feeling in the feet. Since it has been so long since I was on Chemo, I'm thinking that the chance of it recovering is probably pretty minimal... but, I never say never :) The rest of me is as healthy as a horse (assuming horses are healthy) so I'm not complaining all that much.

    But I did last 6 1/2 months on chemo out of 8, the last 1 1/2 months was just the 5FU and Leurocovin. When my onc took me off the oxi, I was concerned that I might be putting myself at risk and she told me that she didn't think so. The 5FU was doing 2/3 of the work and the Oxi 1/3... and I had a good amount of oxi in me by the time she took me off of it. Hehe... I was ready to continue on with it if I had to, despite the pain it was causing in my feet and she said, pretty much the same thing as was mentioned to Pam... for 1 1/2 more months of oxi, it's not worth the risk of doing further damage to my feet which were already damaged.

    I asked, "What if I need to go back on it in the future?" and she said that we'll cross that bridge when we get to it but if more chemo is needed in the future, we would be doing a different combo because it wouldn't be right after the initial surgery like this first round was.

    So there really are a lot of things to take into consideration, as well as different options depending on where one is at.

    Huggggggs,

    Cheryl
  • catherine58
    catherine58 Member Posts: 92
    #12
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    No long term issues
    I finished nine rounds of Folfox in August 2007 and only had very mild neuropathy. Today I have no lingering side effects whatsoever.

    Catherine
  • polarprincess
    polarprincess Member Posts: 202
    #13
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    catherine58 said:

    No long term issues
    I finished nine rounds of Folfox in August 2007 and only had very mild neuropathy. Today I have no lingering side effects whatsoever.

    Catherine

    thanks again
    so with all this good news, i am curious then.. as far as you all know did you get the "full dose" of OXY or did many of you get a reduced dose?
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #14
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    polarprincess said:

    thanks again
    so with all this good news, i am curious then.. as far as you all know did you get the "full dose" of OXY or did many of you get a reduced dose?

    I had the full dose of oxi.
    I had the full dose of oxi. I was originally supposed to get 12 rounds, but stopped after 10 because of such good response in my tumors. Don't know if that was the way it should have been or not, but just what it was. So, it was after 10 treatments of oxaliplatin (plus the 5-FU, leucovorin, and Avastin) plus six additional weekly treatments of cisplatin along with my radiation that I've now recovered from the neuropathy from (the cisplatin seemed to make things far worse than they were with the oxaliplatin, but it might have just been the build up of having another platinum based chemo). I had allergic reactions to the oxaliplatin (hives, lips and face swelling up), so my oxi infusions had to be preceded each time by steroids and antihistamines and they dragged out the infusion time of it three times longer so they could monitor me over a longer time). Anyhow, I would still stick to what I said- that the neuropathy in my hands is now 95%-100% gone & my feet probably have another 15% to go to be back to normal.
    Best wishes to you!
    Lisa
  • kmygil
    kmygil Member Posts: 876 Member
    #15
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    polarprincess said:

    thanks again
    so with all this good news, i am curious then.. as far as you all know did you get the "full dose" of OXY or did many of you get a reduced dose?

    Lower
    Hi again. After the 5th treatment my dose was lowered, but I still have the effects, albeit reduced.

    Kirsten
  • pamysue
    pamysue Member Posts: 105
    #16
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    kmygil said:

    Lower
    Hi again. After the 5th treatment my dose was lowered, but I still have the effects, albeit reduced.

    Kirsten

    This is encouraging. I've
    This is encouraging. I've been off chemo for almost 6 weeks. The nuero in my hands and feet is horrid. Thus why I'm up at 1am typing here with hurting hands. It's the worse when I go to sleep. I wake up with my hands and feet hurting so bad sometimes it puts me into tears. Some mornings, I can barely make it to the bathroom. I cannot even hold my morning meds in my hand. As the day goes on, and I get some Percocete in me, things either get a bit loosened up, or I just am drugged enough that I don't mind them. I'm not sure which. Warm water running over my hands helps and sitting in a warm bath helps my feet. That's been great since my reversal surgery, because my rear end has needed the hot soaks as well.

    I'll just be getting started on the B6 and B12 and also D tomorrow. I'm hoping for some relief. Your posts give me hope.
  • polarprincess
    polarprincess Member Posts: 202
    #17
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    yes
    yes these notes continue to be encouraging.. i am nervous.. i got round 5 on monday with a 10% reduced dose of OXI, yet this is the worst the nueropathy has ever been. My hands and feet are tingling just constantly..it hurts to walk,, my eyes are freezing up.. uggh
  • Faith88
    Faith88 Member Posts: 55
    #18
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    polarprincess said:

    yes
    yes these notes continue to be encouraging.. i am nervous.. i got round 5 on monday with a 10% reduced dose of OXI, yet this is the worst the nueropathy has ever been. My hands and feet are tingling just constantly..it hurts to walk,, my eyes are freezing up.. uggh

    my hubby's experience with oxy
    Reading all these posts makes me want to add my 2 cents. My DH went through all 12 rounds of chemo with the full dosage up through round 10 or 11. It was reduced then as the neuropathy was getting bad. He finished all rounds and has been off chemo since DEC 07, so over 1 year. His neuropathy escalated for about the first month after chemo and got so bad his neurologist told him it could take up to 2 years to improve. Today he went for his every 3 month check up and had slight (very slight) improvement in his hands. His feet are the same. Both hands and feet give him a lot of discomfort and keep him up many nights.
    He's on Neurontin, which has helped him with he pain, but now I'm worried it may be causing liver damage! His doctor said in some cases it shows it can.
    So, I guess it's such a hard thing to know what to do. When you have Stage 3 cancer, you want those added percentages, so neither of us regrets the choice, but then we weren't expecting this to be so long term disabling either.

    It seems from all I've read that MOST people recover from the neuropathy even if not 100% but that most all are affected at least temporarily.
    I do understand what you're saying about losing quality of life. My hubby is an artist, and up to recently couldn't even write legibly. Very tough for sure.

    Hope you can make the best decision for you and keep the faith.
  • RuthieAnne
    RuthieAnne Member Posts: 3
    #19
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    Neuropathy
    I went through 12 cycles with the neuropathy getting worse after each treatment. The neuropathy in my hands went away completely within about 3 weeks after my last treatment. The neuropathy in my feet is still not gone (17 months after I finished treatment) but it is still getting better. It is not even bothersome anymore except sometimes when I am barefoot.
  • hollyberry
    hollyberry Member Posts: 173
    #20
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    RuthieAnne said:

    Neuropathy
    I went through 12 cycles with the neuropathy getting worse after each treatment. The neuropathy in my hands went away completely within about 3 weeks after my last treatment. The neuropathy in my feet is still not gone (17 months after I finished treatment) but it is still getting better. It is not even bothersome anymore except sometimes when I am barefoot.

    just one fo the benefits of being a platinum member!!
    I'm on round 9 of a clinical trial of carboplatin, taxol and avastin and the neuropathy is wicked!! My doc said he may discontinue the chemo if it gets much worse, but being stage 4 with a rare form of cancer, there's not much left to do. Try and hang in there, you're in my prayers.I think most of the posts on this subject relate the effects do get better; my doc doesn't think after a point they will. It's a personal decision and not an easy one to make.
    best wishes and hugs,
    Hollyberry

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