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Chemotherapy induced peripheral neuropathy

swerya
Posts: 1
Joined: Feb 2009

Anybody out there living with this, and have you had any luck with any of the available treatments. Sick of taking pills, does acupuncture work?

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I did Al;pha Lipoic acid, 600 mg/day and I do think it helped. I took it for about 6 months. Then I quit and didn't notice any change. Right now, my neuropathy is much improved and easy to live with.

Best wishes!

Karen

ritaclough's picture
ritaclough
Posts: 45
Joined: Sep 2010

I have numb tingling feet that sometimes produce cramping. Its worse when I sit or lay at night. I'm leery of adding any more drugs into my system so I use marijuana. It has helped

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Hum...isn't marijuana a drug? Also many alternatives which do help the neuropathy.

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

marijuana a drug I don't think so I think it is a weed lol jk

Anne

CindyW7
Posts: 3
Joined: Jun 2010

Hi Swerya,
My husband has a rare form of skin cancer called Merkel Cell Carcinoma. It has met. to his liver and bones. He has had radiation and chemo. I have been trying to find something for his legs and these are the suggestions I have gotten:
Fenayl patch
Lyrica
Neurostin
His Dr. hasn't helped much with it. He has numbness in his hands and feet plus his legs hurt when he walks. The pain is getting worse so I am hoping one of the above meds will help him. His Dr. is supposed to prescribe something this afternoon. We have not tried acupuncture yet.
Good luck,
Cindy

mnmassie
Posts: 7
Joined: May 2010

my oncologist and a neurologist said to try Vitamin B-6. promotes healthy nerve systems.

abrub's picture
abrub
Posts: 1593
Joined: Mar 2010

600 - 1200 mg/day; it made a huge difference, and the effects were fairly rapid (improvement within a month.)

B6 didn't help me much, tho I know it has helped many people.

Foot massage - also a great help! I had a bunch of massages before recent surgery, and the improvement in my foot neuropathy was fantastic.

Just some thoughts...

gdpawel's picture
gdpawel
Posts: 548
Joined: May 2001

There are three major groups of nerves in the human body.

1. The peripheral nerves that carry information to and from the limbs.

2. The nerves that supply the bowels and other internal organs.

3. 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, platinum drugs and the taxanes. 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. 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).

new2me's picture
new2me
Posts: 177
Joined: Jun 2010

I didn't have any problems until just this last week-end when the pain got so bad. I wake up at night with numb fingers that ache all the way to my elbow like carpool tunnel. My fingers are stiff and throb more in the morning then the day but i find it hard to open jars, and hard to pick up things like you mention. My finger tips are are also very sensative. I can't imagine continuing on like this for 6 months or more.
I have no problems in my feet - if I'm gonna have it in my feet, wouldn't I have symtoms by now?
do you suggest any pain pills that might ease some of this pain? why do you suppose it is worse at night??

I appreciate any advise you can give.

thank you,

Kelly

gdpawel's picture
gdpawel
Posts: 548
Joined: May 2001

As seen many times in cancer medicine, oncologists are paid to treat. Many times in this overzealous need to treat, they overlook the side effects that can occur from particularly overtreatment. This is not what oncologists do. They don't know how to treat the side effects of their treatments.

Cancer patients need to add to their repertoire of specialists for their disease. A Physical Medicine and Rehabilitation Specialist for neuropathy, a Pulmonary Specialist for radiation pneumonitis, a Neurologist for leukoencephalopathy or worse, radiation-induced necrosis, or an Endocrinology & Metabolism Specialist, depending on what actually could be wrong with the patient.

While there is no specific treatment that enhances nerve recovery or regeneration, pain may be tolerated by narcotics, antidepressants or anticonvulsants.

I've written before on the boards that anecdotally, drugs like Neurontin are used off-label. Most drugs are prescribed off-label. One must be cautious that off-label remedies are fully discussed with patients and must not do any harm. A number of practioners like to use Neurontin (gabapentin) for all neuropathy. It is already used for diabetic neuropathy and neuropathic pain and (after a work-up and ruling out other causes) they found this to work. But again, do no harm.

As far as I know, there hasn't been any studies of taxane-induced neuropathy. However, recently, there is a SWOG trial aimed at studying neuropathy. It is a Phase III trial that just started in September 2009 that will involve 380 participants and is available at 180 locations.

Acetyl-L-Carnitine in Preventing Neuropathy in Women With Stage I, Stage II, or Stage IIIA Breast Cancer Undergoing Chemotherapy

http://clinicaltrials.gov/ct/show/NCT00775645

Unfortunately, it excludes those with prior taxane therapy! I came across a Yale School of Medicine study that apparently found a molecular basis for the peripheral pain caused by taxanes. It appears to be caused when the drug binds to a protein and initiates improper calcium signaling. This response leads to side effects such as acute hypersensitivity, slower heart rhythms, tingling, numbness, and other symptoms (PNAS 104: 11103-11108 June 20, 2007)

I remember writing five years ago about Bionumerik boosting about its new drug Tavocept, that was aimed at preventing or reducing common and serious side effects, particularly nerve and kidney damage, associated with taxane and platinum drugs. Very little had been accomplished to prevent or reduce chemotherapy-induced toxicities, but they had a new product and began testing it.

MinniHaHa's picture
MinniHaHa
Posts: 3
Joined: Dec 2010

I have found this discussion very interesting. Whilst I did not experience very much pain with my neuropathy it did badly affect my leg muscles and mobility. I found deep muscle massage with an experienced physotherapist very helpful, in fact almost miracle-like in its efficacy. See my comment on reduced muscle tone for further details. All the best and thanks.

lemonade
Posts: 62
Joined: Feb 2010

I completed treatment for anal cancer 10-09 - surgery, radiation and 2 rounds of chemo.

My hands have been bothering me for about 3 months. I had a nerve conduction study done on 12-13-10 and went to a hand specialist yesterday. I have carpal tunnel syndrome. He said the surgery would not help if this is from the chemo. He told me to wear wrist braces for 6 weeks and we will take a look at it after that. My hands were waking me up at night with the tingling. My left hand is worse, and I will try to wear the brace as much as possible during the day. I am wearing both braces all night. I'm crossing my fingers that this will help. I didn't wake up last night after wearing the braces.

Every time I turn around, I have developed a new side effect. I have constant pain when I wake up in my pelvis and lower back. I take a pain pill every morning. I have developed lymphedema. I have to wear compression hose during the day and pump my legs for one hour every night. I look like an ad for a medical supply store. I keep telling myself that I am glad to be alive, but sometimes it is hard when something else keeps breaking. They say you can fix anything with duct tape. Send me a roll!!!

Barbara

cfont11
Posts: 115
Joined: Mar 2011

You seem to know a lot about this. I was diagnosed with ovarian cancer last June and had 6 chemo treatments, last one Nov. 17. I had taxol/carboplastin and got numbness in hands and feet. Hands are fine but feet are worse and I have pain in feet. Some of my toe nails and toes are turning a blackish/blue color. Is this from the neuropathy also? I had trouble with my feet before the cancer, flat feet and stretched ligaments. How do I know if the pain is caused by that or by the neuropathy? Should I see a foot doctor? I had surgery in Jan. (hysterectomy and debulking). There are still microscopic cancer cells left and I have to have 2 chemo treatments. I need to decide if it will be taxol/carbo again, a lesser dose of taxol with carbo or a different drug in place of the taxol. Any advice? I responded very well to taxol/carbo before so the oncologist is leery of changing drugs but does not want to make neuropathy worse.

abrub's picture
abrub
Posts: 1593
Joined: Mar 2010

Taking Alpha Lipoic Acid (600 mg/day) helped me greatly - my feet felt lots better. I had Folfox plus Avastin, and the neuropathy remained severe for over a year, until I started with the ALA. Ask if it's okay to take while on your current regimen.

gdpawel's picture
gdpawel
Posts: 548
Joined: May 2001

There is an excellent book you may still be able to buy at the book store called, "Your Miracle Brain," by Jean Carper (Harper Collins Publisher). It is about the best book I've ever read dealing with Food and Supplements. From common vitamin E to alpha lipoic acid (the antioxidant's antioxidant), ginkgo biloba and Co-Enzyme Q10. I selected what I thought would be the best for my wife.

As far as the joints and knees are concern, chemotherapy-induced toxicities are common and serious clinical problems that adversely impact both the quality of life and the ability to continue treatment. Very little has been accomplished to prevent or reduce chemotherapy-induced toxicities such as nerve damage, kidney damage, and hearing impairment. However, there was a new drug, Tavocept (by Bionumerik), that was aimed at preventing or reducing common and serious side effects assoicated with taxane and platinum drugs.

RoseyR
Posts: 470
Joined: Feb 2011

Thanks for all your information.

Would also suggest from own online research, checking out the following:

bentofiamine (a derivative of vitamin B1) including a product called "Nerve Support Forumula"
vitamin D3 levels (should be at least 35-45; if lower, take liqui-D drops under doctor's care)
vitamin B12 levels (should be at least 500)
alpha-lipoic acid
vitamin E succinate (400-600 mgs a day)
a really good fish oil (2-4 teaspoons a day in two doses, more absorbable as liquid than capsules, no bad taste)

check out as well Life Extension's web site; go to "ailments" and look at the research on supplements that may help from their board of advisors, all well credentialed doctors.

Hope this helps,
Rosey R

kinikiamalia
Posts: 3
Joined: Apr 2011

I have had great success with lessening the neuropathy in my hands and feet during and after my chemo treatment. I highly suggest finding a licensed accupuncturist (mine was at a major hospital) and have a treatment at least once a week to keep it under control. Its only been two months since last chemo treatment and its almost gone.

The Black Knight
Posts: 2
Joined: Feb 2011

Be warned of the people here with a very low post count.

(Ironically my own post count isn't very high)

But I am at almost 2 year+ mark since treatment ended and my hands and feet have yet to return to normal.

Edit...could have sworn it was higher than that... YAY for my memory.

JPJC
Posts: 6
Joined: Feb 2010

Thanks for your comments Black Knight.

After searching for a long time, I have begun to find that I am not alone in dealing with the neuropathy problems.

It has been nearly three years since finishing my last chemo treatment for Stage IV colon cancer.

And, in addition to being happy to be here, I have had some difficult times with the numbness and pain - particularly in my legs and neuropathy in my feet and stomach.

The stomach problems are numbness - probably due to the several surgeries (that's my guess), but the pain in my legs from my hips down is generally about a 6 or 7 on the 1 - 10 pain scale, with 10 being the most painful.

I am a former jogger - having run a mile or so, three to four days per week, for about 20 years. I cannot do it any more because my leg muscles are as "tight as a bow string," and at times it becomes even more painful. Walking is good for my psyche, but I think my bones have gotten brittle and one day my dog ran into me and broke my leg.

I have tried yoga, deep-tissue massage (many times), deep stretching and working out and anything else that may help. The massage therapist said that she could feel all of the knottiness in my legs and if she rubbed too deeply, I would nearly scream with pain.

Recently, my oncologist put me on Lyrica. So far, I have seen a little improvement, but I am really drowsy and am not as motivated as before.

After having looked and looked online and after discussing this with my family doctor and my oncologist, a helpful nurse from our state cancer center
told me that they heard complaints like mine nearly every day and that it was an unfortunate side-effect from the strong chemo drugs that I was given.

So, after about three years of complaining about the pain and thinking that I was just "whining" and feeling sorry for myself, it now appears that what I am putting up with is a long-term side effect from the chemo, that will likely not go away.

Even though "it sucks," things could be worse.

It is always nice to know that I am not alone in putting up with this.

Thanks for your post!

Best wishes.

JPJC

susanherna
Posts: 2
Joined: Oct 2010

My husband's dr. told him to take 600mg. of B6 everyday and to drink a glass of tonic water every night. He also put him on Neurontin.

susanherna
Posts: 2
Joined: Oct 2010

My husband's dr. told him to take 600mg. of B6 everyday and to drink a glass of tonic water every night. He also put him on Neurontin.

thebob61
Posts: 11
Joined: Mar 2011

i have this in fingers and feet . doc. told me to try vit. b6 , b12 , and am takeing d3 .
also ask your doc. about marinol (5mg) . this will help with weight gain and also with being able to sleep at night . wont help with the neuropathy but lets you get some sleep .

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