Neuropathy After Chemo

135

Comments

  • JPJC
    JPJC Member Posts: 6
    #42
    dudessa said:

    Neuropathy
    Hi Mick, Like you, I took Folfox (for stage 3 colon cancer). I had large doses of oxiloplatin so nerve damage occurred fairly soon. I was surprised that the sensations of numbness and pain actually increased after stopping my treatments. My oncologist prescribed Gabapentin, and by accident, I found that by adding Cymbalta the pain went away!!! The combination of the two did the trick. I am one year out and am cutting back on the Gabapentin as the pain is permanently gone but numbness, especially in my feet is chronic. Hey, I can live with it as long as the cancer stays away! I hope that this helps you or anyone who might be experiencing pain. My doctor uses this regime on all of his neuropathy patients now! Good luck.

    Neuropathy
    Hi dudessa,

    I have stage Iv colon cancer and went through two sets of chemo. They gave me a bunch of really strong chemicals like avastin, oxiloplatin and several others.

    It has been about three years now and I am in remission and glad to be here, even though the neuropathy in my stomach, pain in my legs and numbness in my feet are hard to deal with. It is quite painful almost all the time.

    Bottom line: a nurse at our state cancer research center told me recently that they hear very long-term neuropathy complaints all of the time and that the side-effects are the result of the chemo and that the symptoms frequently do not go away.

    This was really news to me as I thought maybe I was just "whining" about it or imagining the discomfort.

    So, even though it is a challenge and I have recently started taking Lyrica (don't know if it is working yet), it looks like I will probably be living with the neuropathy.

    Best wishes.
  • tahoetoni
    tahoetoni Member Posts: 1
    #43
    bluerose said:

    Hey Karen
    It always fascinates me as to how similar so many of us are. Amazing.

    Nah, she said that there isn't alot that can be done for neuropathy - that was encouraging - NOT. You know I didn't link my balance issues with neuropathy at all and just by chance did I mention my recent imbalance and was floored when she started in on this spatial issue. Of course it made sense then, duh. It scares me though. All I need is a freakin broken hip yet and I live on my own. My two cats are no help either. lol. Lazy furballs. lol.

    I bought a wheelchair that I keep folded up here in case I get any worse but gee this imbalance just comes out of the blue, no warnings or anything, hmm, kind of like the cancer did. Too many out of the blue issues along with this cancer stuff.

    Anywho I go for a nerve conduciton test in the next little while, no idea why I am bothering since I know I have neuropathy, just a little more torture so I don't forget about things that really smart. lol.

    Hoping and praying for a miracle cure for neuropathy, that's all we can do I guess.

    Blessings,

    Bluerose

    Greetings from Tahoe
    Wow a
    Greetings from Tahoe

    Wow a friend sent me this site and I finally feel not so alone. What a boost to have others that have found some relief. I think the biggest frustration for me is the lack of knowledge my 2 oncologists, 2 pain specialists, 2 surgeons, 1 palative care doctor and 1 neurologist have had regarding the pain and discomfort of the neuropathy. I am finally headed to UCSF in San Francisco to their neuropathy center in the hope of getting some relief. I will take all these wonderful suggestions with me and ask about them.
    Thanks for being here, I appreciate all of you.

    Tahoe Toni
  • Jedds
    Jedds Member Posts: 1
    #44
    Falling as a result of neuropathy.
    For those asking about the issue with falling down as a result of the neuropathy, I found that physical therapy was very helpful. I was falling fairly often and the doctor recommended the treatment. It was EXTREMELY helpful and has decreased significantly the instances where I lose my balance and fall.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #45
    tahoetoni said:

    Greetings from Tahoe
    Wow a
    Greetings from Tahoe

    Wow a friend sent me this site and I finally feel not so alone. What a boost to have others that have found some relief. I think the biggest frustration for me is the lack of knowledge my 2 oncologists, 2 pain specialists, 2 surgeons, 1 palative care doctor and 1 neurologist have had regarding the pain and discomfort of the neuropathy. I am finally headed to UCSF in San Francisco to their neuropathy center in the hope of getting some relief. I will take all these wonderful suggestions with me and ask about them.
    Thanks for being here, I appreciate all of you.

    Tahoe Toni

    Hi Tahoe
    Welcome to CSN, glad to have you here and hope all goes well for you in San Francisco.

    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #46
    Jedds said:

    Falling as a result of neuropathy.
    For those asking about the issue with falling down as a result of the neuropathy, I found that physical therapy was very helpful. I was falling fairly often and the doctor recommended the treatment. It was EXTREMELY helpful and has decreased significantly the instances where I lose my balance and fall.

    Hi Jedds

    Welcome my friend, do you know what type of physical therapy you were giving. I had problems falling but was able to use a product called Ambrotose and it helped me quite a bit.

    Wishing you all the best
    Hondo
  • charlin
    charlin Member Posts: 1
    #47
    bluerose said:

    Balance issues and nerve damage in the feet.
    If you have neuropathy in the feet have you ever had issues with balance? Like you are walking along and all of a sudden you just tilt over to the side? You don't trip on anything and there is no apparent reason for the tilt to the side but it happens?

    I went to see a neurologist about neuropathy and I just happened to mention the falling over and she said that it is no wonder because apparently nerve damage in the feet can produce this lack of balance. It is something about the fact that the nerves have been damaged and parts of the feet are numb so your spatial concepts are all off - in other words you don't know exactly where your whole foot is at any given time - or part of it -due to the damage. It makes total sense but this is the first time a doctor has tied my balance issue with neuropathy in the feet.

    Let me know if you have this issue if you have a minute?

    Blessings,

    Bluerose

    I had joined this site when
    I had joined this site when I was going through chemo and forgotten all about it..what a joy it was to find your post tonight..I have the same issue with the neuropathy in my feet and toes..my oncologist suggested at my last 6 mo. checkup that I see a vascular doctor to make sure I had no blood clots or blocked veins in my legs or feet..I did that, just yesterday, and the veins and arteries in my legs are totally clear..he said it was probably periphiphal neuropathy, just as I had thought...but it has been so LONG since I had chemo..that was in 2003-2004! He said the effects can last a lifetime in some people..I'm so glad to finally find out what has caused the numbness and very sensitive toes! Your post has helped me to understand why my BALANCE seems to be all off too! Oh, by the way I am an 8 yr. survivor of colon cancer stage 3...had surgery and 6 mo. of chemo, IV Fluorouracil, 5-FU (Adrucil) and Leucovorin (Wellcovorin) tablets. I didn't see these mentioned anywhere as cause for neuropathy but they sure did it. Thanks for the post and God Bless you and keep you cancer-free!!
  • bluerose
    bluerose Member Posts: 1,104
    #48
    Hondo said:

    Hi Jedds

    Welcome my friend, do you know what type of physical therapy you were giving. I had problems falling but was able to use a product called Ambrotose and it helped me quite a bit.

    Wishing you all the best
    Hondo

    Finally went for my nerve conduction test last week
    Well that was painful and a waste of time. "No surprise but you have periferal neuropathy from your cancer treatments'. Everybody together now 'DUHHHHHHHHH'. He then added the observation that 'you sure have been through alot haven't you?' which I appreciated in validation and was a very nice man and obviously knew his stuff but no suggestions. I left now officially having peripheral neuropathy (sigh) but no suggestions on what to do about it. I have to admit that I didn't ask either as I was so freaked about the tests in the first place when they were done it was skid marks out the door. lol. What a wuss I am.

    He wil send a letter to my GP and I will get a copy of it and he will probably make suggestions as to what I might try that may help in there. If not I am going to call his office back and talk to him about it. Gotta have that stamp of diagnosis on that paper. lol.

    As far as all of your comments about falling with the neuropathy it's a big worry of mine too. I did fall completely once and I hit my head - which might explain the typos I keep making these days, lol - but usually and so far it's just sort of tripping or leaning to the side when I take a step. Sort of shocks me when it happens cause it seems as if it just comes out of the blue for no reason. When I talked to the first neurologist who sent me for the nerve study that was when I first realized that the tripping was due to the nerve damage. I really hadn't thought of that. I have a cane like I said before or hold on to a cart that I have to carry groceries/take out garbage/laundry as I live in an apartment building so I am always holding on to something. I have lower back disc degeneration too and that's why I initially started holding on to things as I walked - can't walk well without doing that.

    Anywho I am going to ask my doc for B shots as my B was low and she seems to have forgotten about it and some say that it helps with neuropathy.

    Lyrica has been suggested for me for my fibromyalgia but Ron, like you, I am afraid of the side effects of it. Man you read the warnings and forget it.

    Hope everyone feels better today, even a little better seems like alot doesn't it?

    Blessings,

    Bluerose
  • wetz5526
    wetz5526 Member Posts: 13
    #49
    bluerose said:

    Finally went for my nerve conduction test last week
    Well that was painful and a waste of time. "No surprise but you have periferal neuropathy from your cancer treatments'. Everybody together now 'DUHHHHHHHHH'. He then added the observation that 'you sure have been through alot haven't you?' which I appreciated in validation and was a very nice man and obviously knew his stuff but no suggestions. I left now officially having peripheral neuropathy (sigh) but no suggestions on what to do about it. I have to admit that I didn't ask either as I was so freaked about the tests in the first place when they were done it was skid marks out the door. lol. What a wuss I am.

    He wil send a letter to my GP and I will get a copy of it and he will probably make suggestions as to what I might try that may help in there. If not I am going to call his office back and talk to him about it. Gotta have that stamp of diagnosis on that paper. lol.

    As far as all of your comments about falling with the neuropathy it's a big worry of mine too. I did fall completely once and I hit my head - which might explain the typos I keep making these days, lol - but usually and so far it's just sort of tripping or leaning to the side when I take a step. Sort of shocks me when it happens cause it seems as if it just comes out of the blue for no reason. When I talked to the first neurologist who sent me for the nerve study that was when I first realized that the tripping was due to the nerve damage. I really hadn't thought of that. I have a cane like I said before or hold on to a cart that I have to carry groceries/take out garbage/laundry as I live in an apartment building so I am always holding on to something. I have lower back disc degeneration too and that's why I initially started holding on to things as I walked - can't walk well without doing that.

    Anywho I am going to ask my doc for B shots as my B was low and she seems to have forgotten about it and some say that it helps with neuropathy.

    Lyrica has been suggested for me for my fibromyalgia but Ron, like you, I am afraid of the side effects of it. Man you read the warnings and forget it.

    Hope everyone feels better today, even a little better seems like alot doesn't it?

    Blessings,

    Bluerose

    Nerve Conduction Testing
    Bluerose,

    I had my nerve conduction test done about 1-1/2 years ago. The results were; radiation plexopathy due to radiation treatments I had for colon cancer back in 1987. While I've had some symptoms for many years, they were pretty tolerable up until about 3 years ago. My symptoms are; terrible leg aches (particular in the thighs), twitching and buzzing in my entire legs as well as terrible stiffness & tightness and now my knees are giving me trouble. I also have balance issues but it's not too bad. It's hard for me to sit for any lengh of time and I have a really hard time sleeping at night ~ between the terrible aching and twitching I have a hard time relaxing as I'm reading/watching tv or getting to sleep. My legs hurt ALL the time ~ it just never goes away. Very frustrating. I also have lower back disc degeration as well as osteopenia and I'm wondering if I also might have fibromyalgia. I was seeing an acupuncturist but that only seems to help for a few days, plus it gets to be rather expensive. I do keep active by walking every day. I've gone from walking 3-4 miles a day 3 years ago down to about 1 mile (and that gets tough). After walking, the nerves in my legs have a hayday...they are so active it takes forever for them to calm down, my legs ache more and it's harder to lift my feet off the ground but I feel if I don't try to keep active then they'll get worse....oh what to do. Anyway, I am so thankful for my life but I just wish I could get some relief from these symptoms. Is there anyone out there with similar symtoms and if so what have you done to find relief? Appreciate any help.
    Take care all,
    Barb
  • bluerose
    bluerose Member Posts: 1,104
    #50
    wetz5526 said:

    Nerve Conduction Testing
    Bluerose,

    I had my nerve conduction test done about 1-1/2 years ago. The results were; radiation plexopathy due to radiation treatments I had for colon cancer back in 1987. While I've had some symptoms for many years, they were pretty tolerable up until about 3 years ago. My symptoms are; terrible leg aches (particular in the thighs), twitching and buzzing in my entire legs as well as terrible stiffness & tightness and now my knees are giving me trouble. I also have balance issues but it's not too bad. It's hard for me to sit for any lengh of time and I have a really hard time sleeping at night ~ between the terrible aching and twitching I have a hard time relaxing as I'm reading/watching tv or getting to sleep. My legs hurt ALL the time ~ it just never goes away. Very frustrating. I also have lower back disc degeration as well as osteopenia and I'm wondering if I also might have fibromyalgia. I was seeing an acupuncturist but that only seems to help for a few days, plus it gets to be rather expensive. I do keep active by walking every day. I've gone from walking 3-4 miles a day 3 years ago down to about 1 mile (and that gets tough). After walking, the nerves in my legs have a hayday...they are so active it takes forever for them to calm down, my legs ache more and it's harder to lift my feet off the ground but I feel if I don't try to keep active then they'll get worse....oh what to do. Anyway, I am so thankful for my life but I just wish I could get some relief from these symptoms. Is there anyone out there with similar symtoms and if so what have you done to find relief? Appreciate any help.
    Take care all,
    Barb

    Hi Barb
    All sounds pretty familiar, your symptoms I mean. My feet and legs are numb and cold all the time too and have most of the symptoms you describe. The lower back degeneration doesn't help that's for sure.

    On this board somewhere there are suggestions of what others have used to help with the nerve damage so I guess best is to just read through. Also look for the ones that speak of nerve damage or peripheral nerve damage for more information. There is a search bar at the top of each page here so if you type in nerve damage you might get easier access to the posts that apply.

    Gee you sure walk alot, I would have to call 911 if I tried to go even 1/12th the distance you do, my back is that bad. Hope you find some relief and if you do let us know okay?

    Blessings,

    Bluerose
  • msturtz
    msturtz Member Posts: 4
    #51
    I had neuropathy so bad in my feet and hands that I would fall down and trip over my own feet. I even had a tack in the bottom of my foot once and didn't know it. I would burn or injure my hands, couldn't feel my contacts or earrings to put them in. My Onco Dr suggested I take 100mg of vitamin B-6. I didn't want to take another pill but was so frustrated that I finally did. After a week I noticed more feeling and after several weeks it improved to just the tips of fingers and my toes. I have now been off chemo for over a year so thought I would stop it....after a week the numbness started to spread back up from my toes to feet and up my fingers again so I went back on the B-6 and it helped right away. I asked the dr why and they don't know other than for some people it helps with the nerves....though it is for healthy hearts. Got me -maybe it will help you, in my case, it made a huge difference. Good Luck.
  • bluerose
    bluerose Member Posts: 1,104
    #52
    msturtz said:

    I had neuropathy so bad in my feet and hands that I would fall down and trip over my own feet. I even had a tack in the bottom of my foot once and didn't know it. I would burn or injure my hands, couldn't feel my contacts or earrings to put them in. My Onco Dr suggested I take 100mg of vitamin B-6. I didn't want to take another pill but was so frustrated that I finally did. After a week I noticed more feeling and after several weeks it improved to just the tips of fingers and my toes. I have now been off chemo for over a year so thought I would stop it....after a week the numbness started to spread back up from my toes to feet and up my fingers again so I went back on the B-6 and it helped right away. I asked the dr why and they don't know other than for some people it helps with the nerves....though it is for healthy hearts. Got me -maybe it will help you, in my case, it made a huge difference. Good Luck.

    Healthy hearts?
    Hi Ms Turtz. What did you mean about healthy hearts? You mean the B 6 isn't good if you have a heart problem? Sorry didn't quite catch that. Could you explain please? Thanks.

    Blessings,

    Bluerose
  • Nanda
    Nanda Member Posts: 1
    #53
    todhunter said:

    Foot neuropathy and Teva Flip Flops!
    Cancer and its devastation create a great empathy for humanity. In the last chemo treatment I was told "Get another 10%" off the possibility of recurrence. That meant extra toxicity coursing through my veins (they get to use rubber gloves!). I quit half way through, it was horrible! 2.5 years after last chemo - CT last week - Clean bill of health! Have a colonoscopy!

    My main issue is the sole of my feet. Initially entire sole felt like slabs, now from arch forward. When in shoes it feels like walking on corn cobs or ball bearings - but only when on hard, cold floors or when wearing shoes. Hmmm.... Yea, that's it ... I don' walk on hard, cold floors without wearing my wonderful Teva flip flops (they are SOFT!). I don't wear shoes either. My Berkenstocks also cause NO discomfort. The good news is that I have always worn that foot gear, now I just have to explain myself when in formal meetings. Really loose shoes aren't too bad. Normal fit shoes, tennis shoes don't work without discomfort. I never walk around the house barefoot.

    I also find that my tpyign has issues. Like my fingers move at fidfernt speeds. I guess that the neuropathy, in my fingertips or my brain have been permanently affected my coordination. I was always a good spealer, but that seems to have gone by the waysde. Buck up, put on your flip flops, grow long hair and live life to its fullest. Best wishes to you! Viva Teva (no I don't own stock).

    Teva flip flops
    Couldn't agree more. As a neuropathy sufferer I,too, find TEVA's the best footwear. I can't wear them all the time but they sure help when I can.
  • suzannewhite
    suzannewhite Member Posts: 3
    #54
    bluerose said:

    Healthy hearts?
    Hi Ms Turtz. What did you mean about healthy hearts? You mean the B 6 isn't good if you have a heart problem? Sorry didn't quite catch that. Could you explain please? Thanks.

    Blessings,

    Bluerose

    Painful legs?
    Bluerose, I don't know about B6 and heathy hearts, but surely someone will. Forgive me for not answering your question, but I want to ask if anyone else has experienced severe leg pain from neuropathy which wakes you in the night? I can't walk very far and have balance problems too. But the pain is sometimes excruciating - esp when I am lying down. I am almost two years away from my last treatment and the neuropathy symptoms seem to be getting worse instead of better. Has anyone tried the Nerve Support Formula from Wellness Support Network? If so, have you had good results?I am happy to know we are not alone. So many doctors tell me there is nothing to do but wait. I am getting worse while waiting. Thank you all for being here. Cheers, Suzanne White
  • LaurieH61
    LaurieH61 Member Posts: 1
    #55
    suzannewhite said:

    Painful legs?
    Bluerose, I don't know about B6 and heathy hearts, but surely someone will. Forgive me for not answering your question, but I want to ask if anyone else has experienced severe leg pain from neuropathy which wakes you in the night? I can't walk very far and have balance problems too. But the pain is sometimes excruciating - esp when I am lying down. I am almost two years away from my last treatment and the neuropathy symptoms seem to be getting worse instead of better. Has anyone tried the Nerve Support Formula from Wellness Support Network? If so, have you had good results?I am happy to know we are not alone. So many doctors tell me there is nothing to do but wait. I am getting worse while waiting. Thank you all for being here. Cheers, Suzanne White

    Painful legs
    Hi- I am a breast cancer survivor. Had my mastectomy in Feb 08. Chemo AD and Taxol, followed by herceptin for a year. The pains in my legs started to be severe through the herceptin. After trying several drugs, I was put on Lyrica which seems to help the pain a lot. My problem now, is the numbness in my hands is getting worse, and I am losing my taste buds. My Dr. attributes all of this to neuropathy from the chemo. I am at my wits end. I am several years out from the chemo, and it continues to wreak havoc on my body. Haven't tried the B6, but after reading these posts, will start it tomorrow. God Bless all of you. I pray for your continued success in your fight with the beast.
  • Bran
    Bran Member Posts: 1
    #56
    **** it still here
    I had treatment in 1998 high dose treatment. I still have numbness in my feet and hands. I found nothing to help and the medication that I could get from my doctor don't help, just put me in a different zip code. But by reading the comments from here help me. Vitamin B B1 B12 Ill try it. Ill try anything at this point. I just have to get used to it.I find that I have a higher pain tolerance. I am a fabricator/welder, I find that if I stay moving and don't stand in one position I can get through a work day with minor pain. Although I have allot of padding in my shoe's its just buys me time. I take allot of over the counter pain relief. It helps but nothing works 100%.I prey that one day it will go away but I'm prepared for a life sentence. But it beat the alternative of being dead!.



    I give thanks for my life but some day's it hurts so bad I just want the doctors to cut them off I would live in a wheel chair and just be happier. But I just in pain and don't mean it. It get so bad bad sometimes I can't drive because I can't feel the peddles in my car.



    But I give thanks for my life. It's just gonna be a hard life. I have other side effect as well. I have memory issue's as well. My memory is really bad.



    I am alive.





    No worries I'll get through it.

    FTW.
  • bojiboss
    bojiboss Member Posts: 1
    #57
    Bran said:

    **** it still here
    I had treatment in 1998 high dose treatment. I still have numbness in my feet and hands. I found nothing to help and the medication that I could get from my doctor don't help, just put me in a different zip code. But by reading the comments from here help me. Vitamin B B1 B12 Ill try it. Ill try anything at this point. I just have to get used to it.I find that I have a higher pain tolerance. I am a fabricator/welder, I find that if I stay moving and don't stand in one position I can get through a work day with minor pain. Although I have allot of padding in my shoe's its just buys me time. I take allot of over the counter pain relief. It helps but nothing works 100%.I prey that one day it will go away but I'm prepared for a life sentence. But it beat the alternative of being dead!.



    I give thanks for my life but some day's it hurts so bad I just want the doctors to cut them off I would live in a wheel chair and just be happier. But I just in pain and don't mean it. It get so bad bad sometimes I can't drive because I can't feel the peddles in my car.



    But I give thanks for my life. It's just gonna be a hard life. I have other side effect as well. I have memory issue's as well. My memory is really bad.



    I am alive.





    No worries I'll get through it.

    FTW.

    Numbness sucks
    I was diagnosed on May 13, 2010 with Burkitts Lymphoma. Very rare I was told and very very agressive. Had major surgery May 5th where 12" of my colon and half my bladder was removed. This is how we found it. I was started on a Hyper CVAD regimen which was very agressive. Cyteribine, vincristine, methatrexate, you name it they gave it to me, every 22 days for 8 treatments, thought I was gonna die by the last one. Long story short, I am now in full remission but am dealing with terrible neuropathy in my feet. Had a little before my cancer froma bad back, had surgery 3 years ago for that, all is fine there. I have tried amiltriptiline (SP) and gabapentin (SP), those 2 made feel like crap so I stopped. I have been advised to try Vitamin B Complex which I now have started. Just asking if anyone has a similar story and what works for you. I can live with it because I look at like this, I am here and I am going to enjoy life no matter what.

    Thanks
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #58
    Glutamine
    Sorry for those of you experiencing neuropathy. I notice in this thread that L-glutamine is suggested in a couple of posts. Although this used to be the widely recommended supplement for reducing neuropathy, recent research indicates that some cancers actually feed on glutamine.
  • 734gold
    734gold Member Posts: 8
    #59
    Tethys41 said:

    Glutamine
    Sorry for those of you experiencing neuropathy. I notice in this thread that L-glutamine is suggested in a couple of posts. Although this used to be the widely recommended supplement for reducing neuropathy, recent research indicates that some cancers actually feed on glutamine.

    Hi all. There is some good info in this thread and I'm sorry to see that so many of you guys have onco's that seem to just shake their heads at nueropathy.

    My oncologist intended to put me on gabapentin/nuerotin from the get go, but about 5 days prior to my first treatment, I was hospitalized due to severe back pain (from an old military injury). The docs at the hospital started me on gabapentin/neurotin as part of my therapy and when my onco found out he was thrilled! He said that he perscibes this for his pts,along with vit. B supplements, especially those on vincristine as I was. I am up to a dose of 2400 mg daily and it has kept me going! On occasion, I forget my meds (who of us with chemo-brain haven't - lol!), and the pain is so bad I almost can't walk - but within a short while after taking it, I'm mobile again and in a lot less pain. My Family Practioner is the one who worked me up to 2400 mg and said we could go as high as 3600. My onco has agreed with him on the current dosage and as I said, he wanted me to be on it anyway when I started chemo back in June of 2011.

    It may not work for some of you guys, but I would ask about it - you have nothing to lose. All I know is that I wondered at one point if it was working, and as soon as I forget to take it - I KNOW it's working wonders for me. Hope this helps some of you. Pain is a terrible thing to put up with and we ALL know that we have ALL been through some pretty terrible stuff just dealing with our respective cancers. Good luck and God Bless you all.
  • ron50
    ron50 Member Posts: 1,723 Member
    #60
    734gold said:

    Hi all. There is some good info in this thread and I'm sorry to see that so many of you guys have onco's that seem to just shake their heads at nueropathy.

    My oncologist intended to put me on gabapentin/nuerotin from the get go, but about 5 days prior to my first treatment, I was hospitalized due to severe back pain (from an old military injury). The docs at the hospital started me on gabapentin/neurotin as part of my therapy and when my onco found out he was thrilled! He said that he perscibes this for his pts,along with vit. B supplements, especially those on vincristine as I was. I am up to a dose of 2400 mg daily and it has kept me going! On occasion, I forget my meds (who of us with chemo-brain haven't - lol!), and the pain is so bad I almost can't walk - but within a short while after taking it, I'm mobile again and in a lot less pain. My Family Practioner is the one who worked me up to 2400 mg and said we could go as high as 3600. My onco has agreed with him on the current dosage and as I said, he wanted me to be on it anyway when I started chemo back in June of 2011.

    It may not work for some of you guys, but I would ask about it - you have nothing to lose. All I know is that I wondered at one point if it was working, and as soon as I forget to take it - I KNOW it's working wonders for me. Hope this helps some of you. Pain is a terrible thing to put up with and we ALL know that we have ALL been through some pretty terrible stuff just dealing with our respective cancers. Good luck and God Bless you all.

    Hi Gold
    I am over 14 yrs out from cancer . The 48 sessions of chemo I had after cancer caused no neuropathy problems. The past 6 years tho have been hell. I cannot feel my legs from the knees down and both hands are getting the same problem. I am suffering protein-urea in my kidneys and asthma as well as severe psoriatic arthritis. I have tried lyrica and neurontin. Neither made a difference. As I increased the neurontin dose the pain got worse. I tried endep,arava,prednisone and methotrexate. My rheumatologist(also an ex oncologist) and my nephrologist both believe my problems are auto-immune stemming from chemo. I am having my third kidney biopsy on friday. They are still searching for a cause. Methotrexate suppressed my immune system for 18 mos then became ineffective. They want me to take one of the transplant immono-suppressants now. Either cyclosporine.cyclophosformide or imuran. I am not happy with that as they all have horrific side effects like causing new cancers as well as renal failure. As if I need any of those. I am getting mighty sick of getting sick. I have had some serious skin ca cut out after methotrexate. I have had a lot of falls in the last few years ,the worst was on a concrete boat ramp,it hurt. I find that my capabilities have diminished markedly in the past 12 mos. I hope nobody yells the words "run for your life",if they do thats the end of me unless they make it stagger for your life,Ron
  • Daisey May
    Daisey May Member Posts: 4
    #61
    bluerose said:

    Balance issues and nerve damage in the feet.
    If you have neuropathy in the feet have you ever had issues with balance? Like you are walking along and all of a sudden you just tilt over to the side? You don't trip on anything and there is no apparent reason for the tilt to the side but it happens?

    I went to see a neurologist about neuropathy and I just happened to mention the falling over and she said that it is no wonder because apparently nerve damage in the feet can produce this lack of balance. It is something about the fact that the nerves have been damaged and parts of the feet are numb so your spatial concepts are all off - in other words you don't know exactly where your whole foot is at any given time - or part of it -due to the damage. It makes total sense but this is the first time a doctor has tied my balance issue with neuropathy in the feet.

    Let me know if you have this issue if you have a minute?

    Blessings,

    Bluerose

    balance issues
    Like to thank you for all your interesting discussions. I have been off chemo since the end of November and had my reconnect operation in Seattle on Jan 7th. I have neuropathy in my hands and feet. I have been looking for something that will help me. The cold really bothers me so I'm luckily to be living in Hawaii. Trying to get my life back in some kind order, as we went to Seattle for treatment and my operations. Had my chemo here in Hawaii with the recommendations from my Seattle Doctors. Will get my vitamin B tomorrow.
    Thank you for all your help.
    Aloha
    Carol

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