neuropathy getting worse

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My husband finished his last oxaliplatin treatment in September.  During treatment his neuropathy would almost be gone by the next treatment but now he feels his neuropathy is worse than even during treatment.  I know oxaliplatin has lingering effects but curious if it got worse for others too.  Also wondering if it is due to weather being colder and there fore he is feeling it more?  

Also, did quick search on Pubmed about b12 for neuropathy but seems there is nothing conclusive but wondering if anyone has tried supplimenting with b12 and had any effect.

Thanks as always!

 

 

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Comments

  • bobby66
    bobby66 Member Posts: 69
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    hi,

    hi,

    My neuropathy got worst and they had to stop the oxaliplatin. It's been now almost 2 months and I still have it. I have been taking vitamin B complex from Nature's own and it has been getting better little by little. Hope your husband gets better. Good luck

  • db8ne1
    db8ne1 Member Posts: 142 Member
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    Long Term

    After 2 treatments of FOLFOX, I had sever reactions.  I had a hard time standing up, my lips "froze", etc.  Oncologist cut back on Oxi by 25% for the rest of the treatments.  My last treatment was October 2013.  I still have neuropathy in both hands and feet.  Cold weather increases the discomfort.  Unfortunately, I haven't found anything that helps.  I was told that if it didn't resolve in 2 years post-treatment - that it was likely permanent.  I hope your husband's is not permanent - or that you find a treatment that works! Best of luck.

  • Tunadog
    Tunadog Member Posts: 235 Member
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    I coasted after my last Oxaliplatin...

    Then it hit me heavy after two months. My last infusion was July 27, 2016.

    My Neuropathy has improved slowly. It is about 98% resolved in my hands and my feet are catching up fast.

     I expect it to be completely (?) resolved in a few months. I feel better every week.

    Keep on keeping on...

  • abrub
    abrub Member Posts: 2,174 Member
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    I found that Alpha Lipoic Acid helped

    Alpha Lipoic Acid 600 mg twice a day helped me tremendously (tho I do have permanent residual neuropathy.)  Glutamine was also recommended - I just couldn't face yet another supplement.

  • Watersprite3
    Watersprite3 Member Posts: 31
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    Neuropathy

    When the neuropathy started to move up my feet, my oncologist cut the Oxaliplatin back by 20%.  That was the 9th treatment.  He cut it back another 20% for the 10th and then cut it out completely for the 11th and 12th.  I am now a little over a year out of chemo and my hands are back to normal but I still have a little residual numbness in the tips of my toes.  My doctor told me to take B6 and Folic Acid after I finished - I did but don't know if it helped.  I know the nerves are very slow to heal.

    Eileen

     

  • mozart13
    mozart13 Member Posts: 118
    edited November 2017 #7
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    Club Neuropathy

    I am part of that club as well, almost 3 months after oxy is done, symptoms are the same, cold doesn’t help.

    My oncologist told me that nothing works in terms of improving symptoms. I am on B12 injections as per family doc, but it makes no difference. 

    Hopefully in time will resolve.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Late onset

    I also made it through FOLFOX without neuropathy and then about a month later, when I was on the 5FU during raditaion, it hit, and it hit hard. Hands and feel totally numb.  

    My Oncologist was surprised. Said he had never seen it come on so late, but I wonder. 

    I am four years out from treatment, but the neuropathy is still very obvious in my feet and halfway up my calves; and in my fingertips. 

    Good luck to hubby. 

    Tru

  • debbieshields
    debbieshields Member Posts: 1
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    oxaliplatin, neuropathy & fatigue

    Nine years after treatment with oxaliplatin & xeloda, the fatigue and the neuropathy in my feet, legs, and hands are getting worse.  I'm taking R-alpha lipoic acid, doesn't help.  Anyone know of any solutions?

  • vtspa6
    vtspa6 Member Posts: 172
    edited November 2017 #10
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    My husband's neuropathy is

    My husband's neuropathy is awful!  He was on Folfox for too long before switching to Folfori.  Out of all the side effects, neuropathy is the worse.

  • BRHMichigan
    BRHMichigan Member Posts: 368
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    Getting worse....

    This is so disheartening to read.   My Xeloda and radiation treatments ended mid August.  And my neuropathy in my feet keeps getting worse too.  I also feel random burning in my ureter I assume from radiation.  Why would I want to start more chemo now?  I just can't yet. Getting second opinion from an integrative oncologist in a few weeks. I am hopeful he will provide me some options.

  • Mikenh
    Mikenh Member Posts: 777
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    Getting worse....

    This is so disheartening to read.   My Xeloda and radiation treatments ended mid August.  And my neuropathy in my feet keeps getting worse too.  I also feel random burning in my ureter I assume from radiation.  Why would I want to start more chemo now?  I just can't yet. Getting second opinion from an integrative oncologist in a few weeks. I am hopeful he will provide me some options.

    I had random ureter aches for

    I had random ureter aches for a while after surgery that were a result of the stents. The ureters are pretty high up and I don’t think that radiation to the rectal area would hit them.

  • abrub
    abrub Member Posts: 2,174 Member
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    I just started Glutamine

    And it's been helping with my neuropathy already.  I'm taking 1500-2250mg/day.  I'm amazed!  My heels are better than they've been in years!  (Just started the L-Glutamine a week ago.)

  • SophDan2
    SophDan2 Member Posts: 150 Member
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    I finished 5FU with Oxy 11/8/2017

    I finished 5FU with Oxy 11/8/2017. I cut the Oxy out for final treatment (#12). The neuropathy was only slightly felt post treatrment, however, it does appear to becoming much more noticable after 4 weeks post treatment. I find that I am dropping things more often, which can be frustrating. I feel numbness and tingling in my fingertips, and numbness and tingling on the soles of my feet and toes.

    Has anyone else experienced an off and on occurrance of tingling in the shoulders, which quickly seems to travel through the nerves to the fingers? I thought that I might have injured my shoulder, but it started to show up on my other shoulder too (very weird).

    .

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    SophDan2 said:

    I finished 5FU with Oxy 11/8/2017

    I finished 5FU with Oxy 11/8/2017. I cut the Oxy out for final treatment (#12). The neuropathy was only slightly felt post treatrment, however, it does appear to becoming much more noticable after 4 weeks post treatment. I find that I am dropping things more often, which can be frustrating. I feel numbness and tingling in my fingertips, and numbness and tingling on the soles of my feet and toes.

    Has anyone else experienced an off and on occurrance of tingling in the shoulders, which quickly seems to travel through the nerves to the fingers? I thought that I might have injured my shoulder, but it started to show up on my other shoulder too (very weird).

    .

    Neuropathy

    Neuropathy is terrible.  For me it just got bad at treatment 5 and when my doctor wouldn't reduce the dose it got worse.  After treatment was done I'd been so affected it was hard to walk and hold things.  I've been permanently affected and take medication daily just so I'm able to walk and function but still with complications.  PLEASE talk to your doctor and stress you are having complications so that you don't have permanent disability.  It can get worse after you finish.  Hoping that you get better - wishing you the best.

    Kim

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    edited December 2017 #16
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    SophDan2 said:

    I finished 5FU with Oxy 11/8/2017

    I finished 5FU with Oxy 11/8/2017. I cut the Oxy out for final treatment (#12). The neuropathy was only slightly felt post treatrment, however, it does appear to becoming much more noticable after 4 weeks post treatment. I find that I am dropping things more often, which can be frustrating. I feel numbness and tingling in my fingertips, and numbness and tingling on the soles of my feet and toes.

    Has anyone else experienced an off and on occurrance of tingling in the shoulders, which quickly seems to travel through the nerves to the fingers? I thought that I might have injured my shoulder, but it started to show up on my other shoulder too (very weird).

    .

    Do talk to your doctor, Barry

    Do talk to your doctor, Barry. I remember someone (I think Phoenix) had posted about taking vitamin B12 complex by Nature Made can improve neuropathy. I know permanent neuropathy has always been your major concern and I hope this doesn't get too serious for you. Good luck Barry! 

  • SophDan2
    SophDan2 Member Posts: 150 Member
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    Do talk to your doctor, Barry

    Do talk to your doctor, Barry. I remember someone (I think Phoenix) had posted about taking vitamin B12 complex by Nature Made can improve neuropathy. I know permanent neuropathy has always been your major concern and I hope this doesn't get too serious for you. Good luck Barry! 

    Thanks Kim and Lily

    When I cut out the Oxy for my last treatment I thought that I had timed it perfectly. As I am now finding out, the neuropathy pops up after the treatment has ended. It does not appear as severe as what Km has described, but is very much an annoyance, especially when I keep dropping things.

    Thanks for your feedback ladies! 

  • CathC
    CathC Member Posts: 17
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    My experience as a carer

    My mother didn’t experience neuropathy untill she had completed 6 rounds of folfox and then 3 rounds of 5FU. Her chemo has been postponed for the last month, each week they put it back because of no improvement. I think the cold weather makes it worse. If it hasn’t improved by tomorrow (and it hasn’t) they will review everything. She is disappointed as she had only 3 more rounds to go! Apart from that she is feeling overall better and her quality of life is better than it was. Wishing you all improved health and a bareable journey on your unique path, all your voices make our journey easier x 

  • Phil64
    Phil64 Member Posts: 838 Member
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    It’s 1:52am. My last chemo

    My last chemo with oxciliplatin (11th treatment) was  in December of 2012. I “normally“ feel numbness alone in my feet. Howeve, once in a while, like tonight, I feel a throbbing/pulsing pain emanating from my toes. It’s enough to wake me up and keep me up at night. What I’ve learned to do is take an extra strength Tylenol and put hand warmers in my Six, over my toes. That seems to do the trick and allows me to get back to sleep after a bit. 

    I used to have neuropathy in my hands and fingers as well. Luckily the neuropathy in hands and fingers has gone away.

     

  • BrianChristopher
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    the Rebuilder

    Has anyone tried The Rebuilder? It was recommended by a doctor at The Cancer Treatment Center of America, it is like the Tens treatment, in that it uses low amp electrical impulses to "awaken" nerve regrowth of the Myelin sheath around the tips of our nerves. I use it  specifically for Peripheral Neuropathy caused by Chemo.  I have only used it for a few months, but it is hard to know if it has improved my condition.  I notice changes but the neuropathy still persists, part of my confusion is that residual chemo can cause neuropathy months after finishing chemo treatment (i finished in Aug. 2017).  i also take supplements to aid in rebuilding the myelin sheath. I am open to any suggestions.  thanks Brian

  • carrieh
    carrieh Member Posts: 146 Member
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    B12 and Gabapentin/Pain Meds?

    Hey

    I had/have terrible neuropathy...I'm 6 months past chemo (2nd go-round). It can take up to 2 years to improve...1/3rd never get it. 1/3rd get it during chemo and it goes away. 1/3rd get it and its chronic. I've tried so many things. Try B12 injections once per week, you can do them at home. Ask for gabapentin if not already on it...pain medication was sometimes my only relief and a hot bath/leg massage. It is actually starting to improve now...but I will say...it got worse before it started getting better. I thought I was going to go crazy around the end of treatment and through the first 4 months after...hope this helps. Neuropathy definately sucks!