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Neuropathy After Chemo

ChrisHB
Posts: 22
Joined: Mar 2006

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's picture
alharkabus
Posts: 9
Joined: Oct 2005

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...

Yorkie2
Posts: 1
Joined: Aug 2012

Within a week i had nunbness in my hands almost 3 years later still living with the pain i drive very little and live in pain daily. I never even heard of neuropathy before now i pray for all that suffer each day as i do with this. Its such a hidden nitemare we fight cancer and this monster rears its ugly head and takes our feeling in our feet hands toes and fingers its now after my face. Remeber people it can not take our spirit keep it high walk when you can post when you can and fight always God bless.

laurs
Posts: 5
Joined: Feb 2013

I had chemo when I was 21-22, including vincrisitne.  I even had a sternotomy.  I told the surgeon to perform the tissue biopsy through the rib cage.  There was an option rib cage or sternum, I woke up with the sternum sutured and steritaped.  I go to doctors and am told that this could do nothing.  I sit here asking myself have they had their sternum split open?  Have they put themselves through chemo and radiation.  I look around again and again for different doctors for good reason.  I've had some real doozies.....Yes, I think you could be affected by vincristine along with the other chemo drugs along with the radiation treatments.  I was told in writing a long time ago by a doctor that I could be suffering from something called Lhmeritte syndrome due to the chemo and radiation.  I was told that didn't matter, that wasn't possible...  I merely have tingling sensations, along with my arms falling asleep if held in different positions.  I have had this so called electrical sensation, had it checked out by one of the Universities and been told that everything is normal.  My reply was normal for what?  I fidn excercise helps although I get muscle tiredness in my calves, I was told that's called something else.  I noted yesterday I have a vein that will stick out on my left leg if I put it down to the floor, if I hold it across my right knee this goes away.  I don't know about these so called medical fields, are they after monies....like that one who cut open my sternum?  and then to boot I reread the notes, and they indicated they put a suture near my heart for some reason.  I already contacted the so called medical authorities, it's too long, you have two years to file anything.......His name was Penfield Faber, he became head of cardiothoracic surgery....I've gotten nothing but BS from my so called family.  My one sister was an RN at the time, I don't ever suggest having an RN in a consult with yourself.  She doesn't remember me telling him the rib cage....  Try and be active it may help with the blood flow....I had a physical therapist this year due to a fall on the ice.  She noted one leg was slightly shorter than the other.  She also gave me stretching excercises that helped with the pain immensely.  It was so painful I couldn't get up in the morning on that side.  You may think of trying that in your local....I also bicycle ride, I noted that my arms fall asleep very quickly, the tingling sensation, when I bicycle ride.  I also have access to another excercise bike that I deal with a little bit better, the arms move.  You may want to have your spinal column checked out, from what I was told this year.  The nerves can affect the entire body from the spine.  There are ways to reduce the pain without medications.  

Thoracic Surgery Team | Rush University Medical Center

 

Lhermitte's sign, sometimes called the Barber Chair phenomenon, is an electrical sensation that runs down the back and into the limbs. In many patients, it is elicited by bending the head forward.  It can also be evoked when a practitioner pounds on the posterior cervical spine while the neck is flexed; this is caused by involvement of the posterior columns.

lfondots63's picture
lfondots63
Posts: 823
Joined: Jan 2006

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

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:)

donald54
Posts: 5
Joined: May 2012

Have you had your arch in both feet checked, I suddenly lost both arches and have a burning in my toes, my doctor said it was peripheral neuropathy with can effect both hands and feet please email me back at donald.54@live.com

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

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's picture
tasha_111
Posts: 2042
Joined: Oct 2008

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

Jmdamon
Posts: 1
Joined: Feb 2014

Hi there.... As was previously said, I wish the oncologist had explained things as well as you!!! My husband is almost five years out, and I have to rub his feet nightly because of the severe neuropathy. Gabapentin did nothing and cymbalta seems to help a little.... But no one had mentioned any vitamins that would help. His treatments vePsid and cisplatnium combined for 8 weeks. His feet were numb durning the treatments, but now the numbness is gone and he suffers severe stabbing pain in the balls of the foot, he says is like there are golf balls he is walking on. Also pain in the bones of the toes. Can anyone offer suggestions on sneakers or shoes that they like? I am gonna talk to him about the B vitamins.... No one ever told us about this until well after it was our reality. This site is going to make him feel soooo much better! I hope everyone gets some relief from the pain they have to endure....

 

doza
Posts: 2
Joined: Feb 2014

I can sugest crocks with the back that flips up to hold the shoe on (I walk out of mine all the time). They seem to conform to your foot, have plenty of room for swelling, and the little tabs on the bottom (hurt like hell when you first stand up but so doesnt the bare floor) seem to stimulate after you walk for a bit.. Also I bought some socks from Lamey Wellehan I think there called Aetrex copper sole. They are super stretchy and the copper in the soles seem to help. You should definitly check into the vitamin B as it helps. Nothing else works, I,ve tried them all and found they make you swell, depressed, and fat. Narcotics work but thats because you are in another world. It has been 4 years since my chemo and I am still in pain. I dont drop things as much, can open caps and lids, and can tie my shoes now, but the pain in my hands and feet is an everyday thing. I deal best if I am occupied with something to get my mind off it for a bit. Word finds, books, games, tv...whatever you can find to hold your interest just for a bit. Hope this helps as I know all to well even the smallest things make a difference.Embarassed

 

8965
Posts: 34
Joined: Nov 2005

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

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's picture
Craig S
Posts: 13
Joined: Dec 2008

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

thanks

24242
Posts: 1417
Joined: Mar 2001

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

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

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

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: 6
Joined: Feb 2010

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.

quadgrandma8's picture
quadgrandma8
Posts: 13
Joined: Aug 2011

I am 8 weeks post chemo treatment and I felt like my tingling and all increased once I stopped. I am glad to hear I am not crazy and that you experienced that also. The side effects are very frustrating.

2hurt42
Posts: 1
Joined: Jun 2010

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

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

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

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's picture
PJ Sermons
Posts: 2
Joined: Jul 2010

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's picture
gdpawel
Posts: 549
Joined: May 2001

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

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!!!!

cadsarg
Posts: 1
Joined: Jun 2012

Finished chemo about 6 months ago, started feeling numbness w. the hands & feet immediately after treatment. Anyone think acupunture can help the pain associated w/ neuropathy? I'm currently taking gabapentin and the Vitimen B complex. Also find that gell paks (not heated or frozen but room temp) will provide temporary relief.

todhunter
Posts: 1
Joined: Jul 2010

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

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

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

thanks

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

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's picture
ron50
Posts: 1280
Joined: Nov 2001

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's picture
bluerose
Posts: 1089
Joined: Jul 2009

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

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

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: 51
Joined: May 2011

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

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

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

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's picture
bluerose
Posts: 1089
Joined: Jul 2009

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

Also nerve damage can occure from radiation too!

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

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's picture
bluerose
Posts: 1089
Joined: Jul 2009

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's picture
kkstef
Posts: 706
Joined: May 2008

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's picture
bluerose
Posts: 1089
Joined: Jul 2009

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

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

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