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23 Replies Latest reply: Sep 7, 2012 2:04 PM by SarahtOKLA RSS

How to treat bad neuropathy?

Sue74 Registered Users
Currently Being Moderated

My husband has ALL (PH+) & finished his 2 1/2 year chemo regimen in July, 2009.  He is still on Gleevec & a few other pain meds, but is doing well.

Just wondering why his neuropathy is so bad lately.  He is wearing a Fentnyl patch (50 mcg), which he lowered from the 75 mcg he used to wear.  That was about 2-3 weeks ago & I thought his body would get used to the lowered dose by now.  He said the neuropathy starts in his feet & goes almost up to his upper thigh.  He tried Neurontin in the hospital but we found it made him very depressed.

I was just wondering what others are doing to help their neuropathy.

 

Thanks

  • Re: How to treat bad neuropathy?
    Tex Registered Users
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    Have the doctors tried Neurontin?  It's a pain reliever that focuses on nerves.  I think some folks use it with advanced neuropathy.

    • Re: How to treat bad neuropathy?
      Sue74 Registered Users
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      He tried Neurontin during his 2nd or 3rd hospital stay for the neuropathy.  One of the side effects is depression, and after a week or so on it, he got extremely depressed & was having trouble sleeping.  This was about 2 1/2 years ago, so it is hard for me to remember.  I just remember he did not react very well to it.  Believe it or not, he has taken Xanex (a low dose) lately, & that seems to help.

       

      Thanks

      Sue

  • Re: How to treat bad neuropathy?
    Bette1 Registered Users
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    This may be a weird question but just what does neuropathy feel like?  I am 5+ years out from transplant and have developed some quite severe "discomfort" in my feet and knees.  Reading your post made me wonder if it could possibly be neuropathy (after all these years)?  I have an appointment with my doctor next week but was wondering it someone could describe the symptoms for me.

     

    Thanks for your help,
    Bette

    • Re: How to treat bad neuropathy?
      Sue74 Registered Users
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      From what my husband says when the neuropathy is bad, he says his legs feel like "two stumps."  It is a feeling of numbness, but I guess kind of like pins & needles, because he says it is very uncomfortable.

      I hope your doctor can find something to help with your problem.  My husband's neuropathy didn't get bad until just recently & he has been finished with chemo since July of last year.  He does take Gleevec which possibly may intensify the pain.

      Good luck.

       

      Sue

  • Re: How to treat bad neuropathy?
    Bette1 Registered Users
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    Sue,

    Thanks for the quick reply.  I identify with the feeling of "stumps" but no pins and needles sensations, just a dull ache most of the time.  It's probably nothing to do with my transplants - guess I'll find out at my appointment next week.  Hope your husband finds relief from the neuropathy soon, it's always something isn't it?

     

    Bette

  • Re: How to treat bad neuropathy?
    Bette1 Registered Users
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    Sue,

    Saw my doctor today and the discomfort issues with my feet and legs is not neuropathy.  He smiled and told me I needed to lose weight (I could have told him that).  He also said I might want to see a podiatrist.  So, I've started my diet (again) and if losing weight doesn't help I'll go see a podiatrist (just what I need, another doctor in my life!),  Hope your husband is doing better.

     

    Bette

  • Re: How to treat bad neuropathy?
    lucky4me3 Registered Users
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    My husband has had neuropathy in his hands and feet for 20 months, since he was on Vincristine.

    He's tried Lyrica, Cymbalta, Neurontin, Amitryptiline, Vicodin, Percoset and Marijuana.

    The only thing that helps at all is Marijuana.

    The first four listed made him very depressed and the Lyrica and Cymbalta caused hallucinations.

     

    The other things he does is hydrotherapy, staying off his feet for the better part of the day and massage therapy.

    It's better than it was in the beginning, but seemed to have stopped improving about six months ago.

    He's accepted this may be permanent, while still hoping it gets better.

    Best of luck to your husband.

    Sue

    • Re: How to treat bad neuropathy?
      Sue74 Registered Users
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      It helps to hear that my husband isn't the only one who had a bad reaction to these drugs.  Cymbalta was probably the worst.  I am glad your hubby is experiencing a little relief.

      I hate to sound like an idiot, but what exactly is the hydrotherapy....a jacuzzi & massage maybe?

       

      Sue

      • Re: How to treat bad neuropathy?
        lucky4me3 Registered Users
        Currently Being Moderated

        Sorry it took me so long, but yes. A hot tub does wonders for his feet and legs. for awhile anyway.

        I do the massages and that helps too.

        We're still waiting for it to go away for good.

        Yesterday he tripped and fell on flat pavement on the way into the movie theater. Didn't hurt himself, but this is a problem he has off and on.

        Last month he fell down a flight of stairs. Again, didn't get hurt.

        I call him Gumby. lol

        • Re: How to treat bad neuropathy?
          ajsmom Registered Users
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          my 15 year old son is recovering from neurapathy.  His big toe on his left foot completely drooped and when walking would make him trip.  He fell only twice before we decided to tell the doctor enough is enough.  He blamed it on vincristine and they lowered his dose.  It sucks for him because he is just waiting to heal so he can play soccer like he used to.   Good luck to your husband!

          • Re: How to treat bad neuropathy?
            DEE11 Registered Users
            Currently Being Moderated

            My dx is polocythemia rubra vera and i have been dealing with extreme nerve pain the last few yrs.Its started with the left side and they first blamed the enlarged spleen then it went to groin and both legs.I just finished my 3rd injection of steriods..not sure if this is going to bother the PV but it did help the groin and the legs.They seems to shy away with helping me with the thoracic issue.So from pain doc to a neurologist.I have been taking cymbalta but my BP went sky high.So then they gave me Bp med.Now the pain doc wants to add in Lryica but i ,m not really all that willing to take it.My girlfriend who is bed ridden from RA has been hullucinating also.Plus where i do get most of the side effects from being sensitive from meds..i rather have answers to the nerve pain first.Its been a big circle and everytime i see someone for the answer they try to give me more prescripts instead.Don,t want to sound so neg but its been a ride.The pain can be unbearable and has changed my life around which i,m sure all of you can relate to.Just needed to vent and i,m glad that i read about the cymbalta Lryica combo can cause alot of issues it made up my mind.Thank you all and i wish nothing but the best for everyone.

  • Re: How to treat bad neuropathy?
    RichardG Registered Users
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    I had - what I considered, at least - terrible neuropathy soon after my treatments began. Anything that touched my feet was extremely painful, including bed sheets. I also had it in my fingers and hands, though not quite so badly. After my stem cell transplant, I was pretty quickly weaned off all drugs, and my neuropathy has slowly and steadily improved. Eventually I could sleep under covers, wear shoes, walk distances and then run. I still, 10 years after, have some tingling and numbness in my feet (kind of like the pins-and-needle sensation of the feet "falling asleep"), but I no longer really notice it unless I think about it.

  • Re: How to treat bad neuropathy?
    mdmerica Registered Users
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    Hi , this is Mike and I am new to this site but not to cancer. I was diagnosed with low-grade NHL in 1993 and have been undergoing treatment, first radiation, then chemo, and when my blood counts stayed extremely low, next stem cell and more radiation for the 2 large tumors that formed. Today I am doing well and dealing with chronic pain in my spine and right thigh and inner thigh due to radiculopathy(radiating pain,tingling,burning and muscular atrophy.) Neuropathic pain is difficult to treat and I had tried Neurotin and it gave me hallucinations. Recently my neurologist suggested amitryptaline and it seemed to be giving me some relief but we think it reacted with other things I take, and so I had an episode of global transient amnesia. Then I have had 3 different doctors, 1 who is in the pain dept.at a teaching hospital in Atlanta suggested Cymbalta and I have been on it for about 5 days and although I haven't seen results yet, I would be surprised if I did since my pain is chronic and will need more time. I hope this is helpful.Also keep in mind that the B vitamins are good for neurological conditions and I have recently started to explore more in this direction.

  • Re: How to treat bad neuropathy?
    flybye123 Registered Users
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    Hi,

     

    I rarely write on these boards but this is something I had to comment on.  In 2004 I started chemo and in 2005 I developed the worst case of shingles that my Doctors had ever seen.  I suffered from severe neuropathy and tried all the meds they had.  Nothing helped.  I was so stoned out from the pain meds that I couldn't even function.  Then a friend mentioned to my wife that he had a friend that practiced holistic medicine.  She called her and explained what I was going through.  The next day this person dropped off a vitamin product that saved my life.  Mind you, I do not represent anyone or sell these products.  I was just another cancer patient suffering with unbearable pain.  The product is a B Vitamin complex called Benfotiamine.    I started taking it immediately; 4 pills per day.  After about 3 days I noticed a decrease in pain; after 5 days I would say about a 50% improvement and after about 8 days I was pain free!  No burning, no lightning bolts, no pain.  The numbness is still there from the damaged nerves and probably always will be but the pain is gone.  It took me several months after that to wean of all the meds they had me on as by this time I was pretty well addicted to the pain meds.  Since then I have had several more rounds of chemo, including Vincristine and am now Diabetic.  I had a BMT in December of 08 and am now cancer and pain free.  I've never had a recurrence of the nerve pain except for one short period when I decided to stop the Benfotiamine.  Needless to say, as soon as I felt that first jolt I started back on it.  To this day I still take it to prevent any further nerve damage due to the diabetes.  It's cheap insurance and way cheaper than my copays for all the crap that wasn't working anyway.

     

    Now, you can choose to go online and see what's on the site, or not.  The guy that supplies it has done a great job of writing up all sorts of helpful stuff.  I make nothing by telling this story except perhaps someone may be helped the way I was.  I have recommended it to, and helped several local patients I know and my Doctor has even recommended it to his patients based on his experience with me.  I hope you choose to take a look.

     

    I'll include my email address if anyone wants to email me with questions.  <<edit>>  Email address removed by LLS content editors >>>>  I will even accepts calls if anyone wants to talk with me.

     

    Mark

     

    PS.  If this helps you I would appreciate if you would post your experience so I know.  Thanks! 

     

     

    <edit> OK, so the content editors at LLS have removed the website that I posted for the maker of the Benfotiamine that I use as they say it violates their "no advertising policy".  To be clear, there are many makers of Benfotiamine as this is not a trade name and it is a supplement.  I have thoroughly checked out the company that makes the Benfotiamine that I take and I am very comfortable that they make a good, safe product.  I cannot say the same for the others and I will not endorse or recommend the others as I have not investigated them at length.  The product I take was recommended to me by a professional practioner and it is now being recommended by my Oncologist to other patients.  In addition there is wealth of valuable information on their website regarding Neuropathy that all of you should read.  So, since I cannot give you the website, I'll give you the exact product name that you can search on.  I use "Benfo-150MB/120".  This product contains Benfotiamine and additional B Comples vitamins that are necessary when taking Benfotiamine; not all makers include these and without them you would need to take an additional B Complex vitamin and check dosage etc., although they may not tell you that.  If you do a search on the product name I am sure you will find the website on your own.

    Once again, my disclaimer:  I do not represent this company or have any interest in it whatsoever other than they make a good product that I have been using for 4 years now, and have recommended to many local patients that I have met.  My Neuropathy, at one time debilitating, is now gone.

     

    Message was edited by: flybye123

  • Re: How to treat bad neuropathy?
    debwitter Registered Users
    Currently Being Moderated

    My daughter had neuropathy very bad during treatment.  We found B12 supplementation along with increase magnesium to be very helpful.  Also a Chinese Doctor told us to use a dry sponge rubbed from the foot up the leg several times a day helps to retrain the nerves.  These were all very helpful.  Another supplement that may help is L-glutamine, which is simply an amino acid.  The doctors know about it.  I have a website Free Help for Cancer and you could look under the page muscle cramps for all of the information that I found to help my daughter's neuropathy.  It is a painful, terrible condition.  There is also a neuropathy website.  Just search neuropathy and you will find it. 

     

    Deb Witter

    • Re: How to treat bad neuropathy?
      DEE11 Registered Users
      Currently Being Moderated

      Just updating info.There is now Anodyne therapy which sems to help some people you can google it then look in your area to see if its local.My area is mostly rehabs that carry that type of therapy.Good luck to all who struggle with such pain.tata=D

  • Re: How to treat bad neuropathy?
    debwitter Registered Users
    Currently Being Moderated

    We did the following that worked; B12 every day.  Approved by oncologist.  Chinese doctor told us to rub the area (for my daughter it was her heel up her calf) with a dry sponge many times a day.He said it makes the nerves choose a new path.  I don't know, all I know is that it worked. We were desperate.  Neurontin was prescribed and it helped but caused vision problems, etc. Using the sponge tip helped a lot.  We also used low dose magnesium.  Eventually we were able to wean off the neurontin by using these three things. 

     

    Deb

  • Re: How to treat bad neuropathy?
    Dela, Adult "ALL" Survivor Registered Users
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    Hi, Sue -

     

    I'm late in replying and hope that your husband has found something to help his neuropathy.  I was suffering from severe pain from peripheral neuropathy in my legs, after completing maintenance.  My doctor had me try neurontin (gabapentin, generic) but I started retaining water and other things.  So I tried Lyrica.  For me, it has helped really well.  Except, now I speak what's on my mind, instead of keeping quiet!  In a way, that's not really a problem, but for others they find it surprising that I speak up, now.  lol.

     

    Dela.

  • Re: How to treat bad neuropathy?
    SarahtOKLA Registered Users
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    I'm left with neuropathy from the chemo bortezomib... and I found that the neurontin made me a pretty angry person to be around so I quit taking it because it wasn't doing anything for the leg pain... However, I have been taking Ultram 50mgs 4 pills daily and that actually helps a lot! Ask the doc if there is anything like ultram that he could give for breakthrough pain?

     

    Hope I helped!

    Sarah

  • Re: How to treat bad neuropathy?
    deanaace Registered Users
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    I have been complining about leg pain since treatment for AML. my Dr. and everone else cannot understand what is wrong. It has taken my Dr. 8 months to finally tell me he Thinks it is post chemo neuropathy. Finally he is taking me seriously. He has prescribed neurontin. After doing some research. i have decided not to take it. Does anyone have simular issues? What other meds are helpful?

    • Re: How to treat bad neuropathy?
      Tex Registered Users
      Currently Being Moderated

      Neurontinn should be your best bet.  It should be but I haven't had to take it.

       

      I'm curious why you chose not to take it?

    • Re: How to treat bad neuropathy?
      SarahtOKLA Registered Users
      Currently Being Moderated

      I've been taking tramadol 50 mg's twice daily for about four months now, and it's the only thing that helps.. I took neurontin too 1200mgs a day and it was horrible. It made my mood really bad and did nothing to impact my pain problem... So ask your doctor about tramadol. It has worked wonders for me and it worked after the first time I took it. I love it because I don't have any kind of dependence to it like I did with the hydrocodone.. Pls try it, it will help the pain. I have post chemo neuropathy from a clinical trial drug bortezomib and the tramadol is the only thing that helped.

  • Re: How to treat bad neuropathy?
    Roscoe Registered Users
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    I had a SCT in 2008 and have had diabetic neuropathy for two years.  I have been taking Gabapentin and Hydrocordon for that same time.  I also used skin patches that did help.  I went to a pain clinic and received several Lumbar
    Sympathetic Blocks with minimual impact
    .  Eventually the pain became so intrusive that the Dr recommended a neurostimulator implant.  It alleviated about 75% of the pain.  I still take 600mg of Gabapentin 4 times a day.  I also have a chronic case of Lymphadema, but that is another subject.  I hope you get relief because I know the impact it has on your life.  Best wishes to all.

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