Neuropathy After Chemo

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ChrisHB

Posts: 22
Joined: Mar 2006

March 11, 2006 - 5:01pm

Hello, My brother has completed his second round of aggressive chemo after colon cancer recurred in his liver. He had surgery to remove two lessions on the liver three weeks ago and the surgeon feels the outlook is good. Right now he is dealing with neuropathy in his hands and feet. He feels like it has increased after the surgery and wonders if that may be due to reduced activity during recovery. His doctor told him that the neuropathy may go away in up to six months or posibly not at all. I am wondering if anyone has come across anything to help relieve the numbness and pain? His doctor told him to continue calcium and a vitamin. I have read in a couple posts about Glutamine and also one about Alpha Lipoic Acid. Any ideas would be appreciated. He will go back to chemo at the end of the month. Thanks.

alharkabus

Posts: 2
Joined: Oct 2005

March 13, 2006 - 7:35pm

Re: Neuropathy After Chemo

I have had some neuropathy in hands and feet-treatment was oxalaplatin at first, and that did the damage. That ended a year ago and some effects are still present, mostly a lack of feeling, increased sensation of cold. I am currently on 5FU and camptosar, but I don't think either of those causes neuropathy, though not sure. I have heard over and over that sometimes it goes away and sometimes it doesn't. Just what we want to hear, right, a lack of clarity? But I have found that a lot of cancer issues are less than clear. Good luck...

lfondots63

Posts: 833
Joined: Jan 2006

March 14, 2006 - 4:54pm

Re: Neuropathy After Chemo

Hi Chris,

I have just started folfox treatments for colon cancer. One of the drugs is oxalaplatin. One of the side effects are possible neuropathy. My chemo nurses said to take Vitamin b6 and folic acid to help cut down on this. You should also tell your oncologist. Mine said if this starts they can 1/2 the dose of oxalaplatin. I have heard from some it goes away and others that it still lingers. Good Luck and good vibes your way!

Lisa

bugaboo24

Posts: 5
Joined: Mar 2006

April 9, 2006 - 12:20am

Re: Neuropathy After Chemo

Hi Chris, I myself suffer from severe neuropathy in my hands and feet as a result of chemo. The neuropathy started in March of 05 and I had my last chemo treatment in April of 05. I still have a lot of numbness and quite a bit of pain in both my hands and feet. My doctor told me to increase my B vitamins. I take B1, B2, B6 and B12. B vitamins are very good for the nerves but you need to make sure you take equal amounts of each because to much of one can wash out the benefits of the other. I do have to say since I increased my B vitamins, it has seemed to get a little better so far. We'll see what happens down the road. I have had this for over a year now and often get discouraged but I do have a friend that had the same thing and she keeps telling me that her's took a year and a half to go away and one day she woke up and it was gone! So I keep hoping!! There are also several medications for this but I personally don't take them because the side effects scare me. There is quite a bit of information on the web also. Tell your brother good luck and hang in there!!!

Lisa:)

gdpawel

Posts: 431
Joined: May 2001

April 15, 2006 - 5:23pm

Re: Neuropathy After Chemo

Neuropathy is a problem that sometimes occurs with chemotherapy treatment. It's not all that rare, especially frequent in patients older than 65 years of age. It is damage to the nerves. It can occur from some chemotherapy drugs used in conventional cancer treatment.

There are three major groups of nerves in the human body, the peripheral nerves that carry information to and from the limbs, the nerves that supply the bowels and other internal organs, and the nerves of the head which connect to the ears, eyes, taste buds, etc. Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves. Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids(vincristine, vindesine and vinblastine), platinum drugs(cisplatinum, carboplatinum) and the taxanes(taxol, taxotere). These drugs have the potential of interfering with nerve function.

You may notice symptoms in different areas of your body depending on which groups of nerves are affected. Symptoms in the hands and feet happen when peripheral nerve damage happens and are not rare with vinca alkaloids. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position. If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed. Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful. Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:
Cisplatinum (Platinol)
Carboplatin (Paraplatin)
Vincristine (Oncovin)
Vinblastine (Velban)
Etoposide/VP-16 (VePesid)
Cytarabine (Cytosar, Ara-C)
Hexamethylmelamine (Hexalen)
Suramin
Paclitaxel (Taxol) and Docetaxel (Taxotere)
Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

tasha_111

Posts: 1941
Joined: Oct 2008

November 14, 2008 - 5:20pm

gdpawel

I sure wish my oncologist was half as knowledgeable and helpful as you. I have learned a heck of a lot more reading your posting than I have ever got out of him. Thank you

8965

Posts: 34
Joined: Nov 2005

May 10, 2006 - 10:37am

Re: Neuropathy After Chemo

Hi Chris

My dad complained of the numbness in the hands a constant tingle. His oncologist told him to start B-6 it took a while but the symtom did lesson over time even when he continued chemo. Best of luck.
Christine

Clarion

Posts: 1
Joined: Nov 2003

May 23, 2006 - 10:45am

Re: Neuropathy After Chemo

I had neuropathy because of chemo drugs, what helped me was a very weird contraption called a vibe machine. Go to the website and see if there is one in your brother's area www.vibemachine.com. The website isn't the greatest, but maybe there will be a practitioner close by. I know the ones in my area don't charge for cancer survivors and some only cost $5 per session. Of course, there are those out there who are in it for the money, but it just might be worth it! Good luck and my prayers are with you.

Craig S

Posts: 13
Joined: Dec 2008

December 10, 2008 - 8:45am

Neuropathy

I finished Folfox about 1 year ago, and still have a good bit of numbness in my feet. Its not painful, but can be annoying. When I was on treatment, I'd have it in both my feet and fingers. My hands are pretty much good now, but my feet still bother me. I'm not sure if that'll ever go away, but some days are better than others. Like others have stated, my onc was a little vague about whether it will go away or not.

aykt36

Posts: 28
Joined: Jun 2010

June 9, 2010 - 9:16am

thanks

24242

Posts: 1349
Joined: Mar 2001

June 9, 2010 - 9:25am

Pain

I am one that has suffered terribly for years after all treatments and doctors refused to address the problems feeding me mostly anti depressants. They gave me headaches and nausea no relief from all the pain.
I was on methadone for almost 5 years as well as 3 others and finally got the pain controlled more than 6 years after my treatments. Now I have new lumps and they are causing me grief just like the first one's I had and everyone tells me that they can't hurt like that. They do and since he manipulated my arm the pain increased in lump areas and radiated from there. Nerves are the source of much pain and don't get why so hard to understand lumps affect things in surrounding area like nerves and muscle.
I am glad I read this cause I am falling down the stairs and MRI shows deteriation in areas that MS patients show. So this might too contribute to that problem of mine and can only hope I don't scar this pretty face, lol
Tara

Mick123

Posts: 18
Joined: May 2010

June 11, 2010 - 7:10am

Neuropathy

Like many I have had and still do have the tingling in feet and toes. I've learned much about it just from reading the posts here and I thank you all for it. As I understand it, it's the platin drugs that are the cause. In any case, a Doctor friend as well as a friendly pharmacist and nurse have all suggested B Complex vitamins. No results to report as yet as I just started taking it but I am hopeful and will keep you informed if there is progress. Thanks again.

Mick

TwoTimeCancerChick

Posts: 8
Joined: Aug 2010

August 31, 2010 - 10:23pm

Neuropathy

I still have neuropathy in my hands and feet after finishing up six months of FOLFOX chemo this past March. I too was told to try B6 vitamins by my first oncologist in NJ, which didn't do anything. I am now doing my follow ups at Duke Medical in NC and my new oncologist told me to give glutamine a try. She said there's not a whole lot of research on it but didn't think it would hurt. I've been taking the glutamine for over a month now and I think it is helping a bit. The pins and needles in my hands aren't as intense and my dexterity seems to be improving. There is a tiny bit of improvement in my feet but not enough to get me to jump up and down for joy just yet.

dudessa

Posts: 2
Joined: Jul 2011

July 16, 2011 - 6:44pm

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.

JPJC

Posts: 5
Joined: Feb 2010

August 31, 2011 - 9:01am

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.

2hurt42

Posts: 1
Joined: Jun 2010

July 5, 2010 - 7:20pm

pain is terrible,why is it so hard for people/ doc 2 understand

going on 2 yr. bones/joints ache all the time , no one seems 2 think that u should hurt all the time from cancer / if in remission , they think you should be just fine . its unbelievable.

sue K

Posts: 18
Joined: Apr 2010

July 6, 2010 - 1:30pm

You have my sympathy - I

You have my sympathy - I feel exactly the same, with constant aches and pains all over. I am free of my cancer just now, but it's hard to feel happy about it when the pain goes on.
As you say, no-one seems to understand, except the good people on this forum.
I don't know how long it goes on, but it would be good to get some relief.
Good luck to you, and God bless
Sue

dudessa

Posts: 2
Joined: Jul 2011

July 16, 2011 - 6:47pm

Pain with neuropathy

Sue, check out my posting to Mick and see if this is something worth trying...it was something that my doctor and I just happened to stumble upon and it really helped me. My oncologist now uses this regime on any of his patients that are interested. Good luck!

B.Grinesworth

Posts: 4
Joined: Jul 2010

July 9, 2010 - 11:07am

a few ideas

Here are a few ideas that may to help diminish the effects of neuropathy. Make sure you are aware of environmental factors that may worsen your symptoms, such as effects by hot/cold temps, humidity, etc. Avoid exposure as much as you can to conditions that worsen the neuropathy. Even shoes or other clothing may add to the discomfort. And refrain from alcohol! in addition to worsening your symptoms, alcohol may cause additional nerve damage. Sit down and rest when possible to avoid unnecessary stress on your legs and feet. For diabetics, make sure you tightly monitor and control your glucose levels, even more than normal. This may cause additional injury to your nerves like alcohol. just a few ideas I got from the Center for disease Control (CDC)

Hope this helps!

B. Grinesworth

PJ Sermons

Posts: 2
Joined: Jul 2010

July 20, 2010 - 11:37pm

In the same boat

Been cancer free for a year now, but not free of the after effects. I too have server pain in my joints/bones and feet. My job requires me to be on my feet a lot and after about 2 hours of standing I am in so much pain some days I am in tears. They feel like I am walking on a bed of broken glass after someone has smashed them with a large hammer. And yes, I also get the look of disbelief from people around, they just don't have a clue. It is 12:30 in the morning and I can not sleep because of the stabbing pain in my joints and muscles, it feels like someone is standing over me stabbing me with an icepic, horrible pain.
Been to a Neuro Dr. and he has me taking B12 shots (my husband gives them to me) There are reports that low levels of vitiam B12 makes neuropathy worse, well I will give a shot (excuse the pun), as of yet have not seen much change, if any.

gdpawel

Posts: 431
Joined: May 2001

July 22, 2010 - 7:19pm

Numbness and Pain

Researchers at Yale School of Medicine reported in a study published in the Proceeding of the National Academy of Sciences, a molecular basis for the peripheral pain or numbness caused by Taxol. It appears to be caused when the drug binds to a protein (neuronal calcium sensor or NCS-1) and initiates improper "calcium" signaling.

When Taxol binds to NCS-1, it makes the cell more sensitive to normal signals and increases the magnitude and frequency of changes in calcium. Over time, increased calcium levels activate an enzyme called calpain (no pun intended) that degrades proteins, especially NCS-1.

Calcium signals are needed for nerves to be stimulated and to respond and the loss of NCS-1 makes it more difficult to generate any calcium signals. While the loss of NCS-1 stops the protein interaction that is causing the inappropriate calcium signals, it also decreases the ability to have normal responses (PNAS 104: 11103-11108 June 20, 2007).

My thought is, ask your doctor about checking your calcium levels and possibly receiving IV or oral calcium supplements.

heinzie

Posts: 2
Joined: Sep 2010

September 2, 2010 - 10:30pm

foot neuropathy

My empathy to you!!!! I have my good days and bad days with my feet. Your description of the discomfort is right on. I take Neurontin 2-3 times a day, but especially at night 1 hr. before bedtime along with 1-2 Tramadol. It relieves the discomfort and I sleep like a baby. The Tramadol also helps with the muscular pain. I can take the Tramadol during the day when needed also and it does,t cause drowsiness........there is no reason for you to be in so much pain.....ask or tell your Dr. if neccessary that you would like to try these meds. Feel better PJ!!!!

todhunter

Posts: 1
Joined: Jul 2010

July 13, 2010 - 10:03am

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).

heinzie

Posts: 2
Joined: Sep 2010

September 2, 2010 - 10:15pm

The old foot neuropathy

Enjoyed your humor today....just hunting around on the internet for some relief for my feet...your comments helped the most as there really doesn't seem to be any definitive treatments medically for complete relief. I've noticed this summer that my flipflops(some I've had for 3 years are the most comfortable gear for my feet. Sneakers with socks are very uncomfortable too. Congrats on your clean bill of health. I'm going to look into a pair of Berkenstocks let my hair grow long again and treasure all that God has given me!!!

Nanda

Posts: 1
Joined: Jul 2008

November 19, 2011 - 4:08pm

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.

aykt36

Posts: 28
Joined: Jun 2010

September 9, 2010 - 7:32pm

thanks

bluerose

Posts: 1064
Joined: Jul 2009

July 20, 2011 - 6:09am

Remember, not everyone has the same neuropathy issues

I am a 25 year cancer survivor and I have neuropathy in my feet and hands and who knows where else, have alot of side effects of treatments long ago.

I myself have had the neuropathy get worse but it has stabalized now and has left me with a numb foot and numbess and tingling in several areas of my legs. My hands too, pain in them as well.

You have to remember though that everyone is different after treatments, depends on so many things like what drugs were taken, your basic health to begin with, blah blah blah so read the entries for interest sake and to absorb what others have experienced and use the info to run by your doc and check with your own symptoms but do remember that just because one person like me had this type of symptom last for years that your brother's situation might be totally different.

I am actually going to see a new neurologist for the first time this Friday and so I will see what treatments might be suggested, if any. I will try to remember to post what she said for your information. I have chemo brain so if I don't remember to post, give me a jingle through person messaging on this site and I will share what she has said.

All the best to you and your brother.

Blessings,

Bluerose

ron50

Posts: 517
Joined: Nov 2001

July 20, 2011 - 5:24pm

G'day Bluerose

Hope the neurologist can help, I went to one a few years ago but all he did was nerve conductivity tests and he described them as hard to interpret. The neuropathy in my hands and feet has gotten much worse. I have tried lyrica and endep but could not afford the former at the dose I needed and had serious side effects with the latter. My psoriatic arthritis is in a major flare at the moment as I had to go off arava as it was compromising my liver and had a lot of side effects .I have been off treatment(docs orderes)till my liver functions improve. Whilst on methotrexate and arava my protein loss thru my kidneys has been double the permitted loss at around 400 mg a day. Since I have been off meds it has risen to 1400 mg a day. My nephrologist now suspects some form of vasculitis or lupus. I am having a kidney biopsy this friday so hopefully I can get back on some sort of control. At the moment I am in a lot of pain and am having breathing problems. All the best to you,Hugs ,Ron.

bluerose

Posts: 1064
Joined: Jul 2009

July 21, 2011 - 6:43am

Hey Ron

Hugs back. I am so sorry to hear about your pain and breathing issues. I can empathize as I have a lot of pain too and my breathing issues are better than they used to be but we are into hot humid weather and it's not helping. I am just so sorry to hear of the complications too that you have that prevents certain med use that could help the pain. I have that now too, ocmplex medical history and lots of procedures and meds now off the table for me. It's scarey when options start becoming less and less. I have my faith, thank goodness.

I will let you guys know what the neurologist says but there is only so much they can do and I am dreading that conductivity test cause I have a pacemaker (damage to my heart from a chemo drug, grrr). It's complicated so I know what you are going through Ron.

Take care.

Big hugs
Bluerose

yelad77

Posts: 1
Joined: Aug 2011

August 19, 2011 - 9:13pm

I'm new and same issues

Hi,
I saw your post I just signed on to the cancer network surivors network. Its something ive wanted to do but havent gotten around to it. Ive been fighting cancer for over 6 years with the rare diagnosis of Nueroblastoma (Mostly almost always found in children under 10). Ive had radiation twice to the abdomen area and 4 major surgeries and am having the same feelings in my body. I dont talk to any other cancer survivors so its refreshing to get on this site. I saw a nuerologist the other day they did an MRI came out negative. But I also get random limbs that jerk some times which scares me. I was wondering if you or anyone you have talked to get this as well. I have allot of stress I mean allot I really need some help for panick attacks so I dont know if that has something to do with it or not.
Also they Nuerologist did a basic exam and I passed with flying colors she just wants to put me on Nuerotin and call it a day. Just wondering if maybe you had the same from your doc.
Thank you hope your doing well

Crazysony

Posts: 2
Joined: May 2011

July 29, 2011 - 9:03am

Neuropathy as a side effect

Hi!I had a friend who had trouble with drugs and at the age of 20 he went to a rehab center.When asked why did he choose drugs his answer was "because they are reducing the pain".After a medical check doctors found out that he was suffering of testicular cancer and he didn't say anything about his problem because he was ashame.Finally he went to chemotherapy and after a year his problem seemed to be solved.After few days he claimed that he don't feel his feets and he has numbness.The doctor put the diagnose of neuropathy and he also told him that in some cases it appears as a chemotherapy side effect.He took some pills and now he is completely cured.

nowrest

Posts: 33
Joined: May 2011

August 1, 2011 - 9:12pm

What pills?

Can you find out what the pills were he took. From the posts you can see that not a lot seems to work.

Hondo

Posts: 4651
Joined: Apr 2009

August 4, 2011 - 8:58pm

Hi Crazysony

That is great news that your friend is doing so well, thanks for the post.

All things are possible
Hondo

popeytre

Posts: 1
Joined: Aug 2011

August 22, 2011 - 1:39pm

First I would like to thank

First I would like to thank the one who started this discussion. I believe that the people who went through such a situation should have a place where they could share everything. My experience with neuropathy was not as unpleasant as for many of the other chemo treated patients! My doctor said this was because I started phentermine even before starting on chemo. I looked it up on the internet and found that this drug is really highly efficient as a symptomatic treatment in many diseases> I never went through the clinical phase of neuropathy, only the subclinical one with no discomfort whatsoever. Maybe my experience will help someone! I really hope it will!

bluerose

Posts: 1064
Joined: Jul 2009

August 4, 2011 - 2:13pm

Sugar and Neuropathy

I posted a new subject under the above topic but put it in Emotional Support by mistake. Duh, chemobrain strikes again.

Have a read of it Chris, you never know, it might help you too.

Blessings,

Bluerose

json_2011

Posts: 110
Joined: Jul 2011

August 6, 2011 - 10:14am

Also nerve damage can occure

Also nerve damage can occure from radiation too!

Hondo

Posts: 4651
Joined: Apr 2009

August 6, 2011 - 4:58pm

Hi Json

Very correct, I like many live with nerve damage, mine is on the left side of my face from being over radiated, just another part of the new normal we learn to live with.

Hondo

bluerose

Posts: 1064
Joined: Jul 2009

August 20, 2011 - 3:29pm

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

kkstef

Posts: 756
Joined: May 2008

August 20, 2011 - 8:52pm

Same issue here

Hi Bluerose,

I also recently saw a neurologist re: my balance. I attributed it to my neuropathy in my feet but the oncologist did not think it was and suggested I see a neurologist. I tend to just tilt to one side at times and also notice I lose my balance if I turn to the side to fast. I have had 2 nasty falls...one resulting in a broken ankle and one in a ruptured disc so I am a bit nervous about walking, etc.

I did see a neurologist about a month ago. He did lots of neuro testing in his office and said about the same thing as the neurologist you saw. That my spatial relationships are messed up due to the lack of feeling in my feet. Since I finished chemo about 2.5 years ago, he didn't think there was much to do....he suggested B vitamins for a 3 month trial, to use a walking stick on uneven surfaces, and if I wanted he could refer me to PT to teach me some balance exercises (which I had already done).

My husband is trying to figure out how to outfit me with "training wheels". He is very funny!

Did you get any suggestions for living with the balance issues??

Best to you,

Karen

bluerose

Posts: 1064
Joined: Jul 2009

August 23, 2011 - 2:25pm

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

tahoetoni

Posts: 1
Joined: Sep 2011

September 21, 2011 - 10:37am

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

Hondo

Posts: 4651
Joined: Apr 2009

October 8, 2011 - 10:20pm

Hi Tahoe

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

Hondo

charlin

Posts: 33
Joined: Dec 2003

October 15, 2011 - 9:05pm

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!!

Jedds

Posts: 1
Joined: Oct 2011

October 7, 2011 - 10:07pm

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

Posts: 4651
Joined: Apr 2009

October 8, 2011 - 10:23pm

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

bluerose

Posts: 1064
Joined: Jul 2009

October 16, 2011 - 7:53am

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

Posts: 11
Joined: Apr 2010

October 16, 2011 - 12:49pm

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

Posts: 1064
Joined: Jul 2009

October 16, 2011 - 1:39pm

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

Posts: 4
Joined: Oct 2011

October 16, 2011 - 11:11pm

relief of numbness

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

Posts: 1064
Joined: Jul 2009

October 17, 2011 - 7:32am

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

suzannewhite

Posts: 3
Joined: Oct 2011

December 12, 2011 - 9:04am

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

Posts: 1
Joined: Jan 2012

January 8, 2012 - 11:51pm

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

Posts: 1
Joined: Sep 2004

January 11, 2012 - 6:57pm

shit 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

Posts: 1
Joined: Jan 2012

January 31, 2012 - 3:53pm

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

Posts: 626
Joined: Sep 2010

February 8, 2012 - 2:12pm

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

Posts: 8
Joined: Feb 2012

February 10, 2012 - 9:46pm

Relief from neuropathy

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.

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