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neuropathy

cbecker
Posts: 89
Joined: Sep 2002

Does anyone know wht to do for neuropathy from chemo of taxol. This is numbness and tingling of feet and hands. My husband has it in the fingers and toes and feet and seems to be getting worse. Thanks, cbecker

ljanak
Posts: 1
Joined: Aug 2003

Checker, I too suffer from intense neuropathy from chemo therapy drugs in my case the doctor states that it is as a result of the drug Vinsblastin. My doctor says that it could last upwards of 15 weeks or more or in some cases it can be permanent nerve damage. Your nerves are like a piece of electrical wiring that has the insulation around it and the drugs destroy the insulation or plastic coating around the wire, if you get the analogy. It takes time for the nerves to repair and rebuild the insulation around the wire. Some say that can be a lengthy process. (Good Diet is a must) My doctor has me on major doses of Vicodin. I take three 500 mg tabs twice a day, and it seems to mask the pain, but then goes away. I have taken as many as nine pills in one day just for relief. I have the greatest discomfort in my ring finger and little finger on both hands and down the edge of my hand. I have little or no control of the use of my little fingers. typing this is very difficult to say the least and I am a good typist. There is also another drug out there that can be taken for the neuropathy, it is called neurontin ( not sure of the spelling). Believe me I have tried everything I know of. I finished my chemo on June 2, 2003, and have had the neuropathy since about the fourth set of injections. I have tried accupuncture, and deep tissue massage, but to no major avail. My balance is also greatly effected by the neuropathy. I can stumble over the slightest thing on the floor, even a throw-rug. I have difficulty wearing shoes that have any kind of sole on them, because the edge of the leather sole tends to throw me off balance. Others I have talked to say that one may never be able to wear a pair of shoes with heels on them. I wear mocassins all the time, and now I am trying insoles with magnets and they seem to give me a little comfort. I hope this helps, other than that its just a waiting game. Too bad they don't know more about how to treat the side effects of the neuropathy before they inject all those poisonous drugs in your body. have a good day and hope this helps

cbecker
Posts: 89
Joined: Sep 2002

Thank you for the info on neuropathy. I found out that the University of Chicago has opened up a new clinic on and for neuropathy patients. I'm going to check it out.
We go there to get his Iressa drug any way so we are there. I have been told to use the herb phosphatidylserine. Alot of research was done and I know this is for memory but it has something to do with the brain and your nerve cells. We are going to try that too. And I will try your suggestions. I hope you get this. Please let me know. Thanks, Candy Becker cbecker not checker

Stellamary
Posts: 8
Joined: Jan 2004

Stella Mary - what is vinsblastin? What is Vicodin? I was on Taxol for three infusions and caused nerve damage in my feet and finger tips. Taking Neurontin, 400 mg 4 x/day, 100 mg B6 and L-Gluatamine; just started taking 20 mg/day Tomoxifin.

momkin
Posts: 1
Joined: Nov 2004

I have taken neurotin since May 2004, up to 4 tablets a day, the neuropathy has increased, can no longer drive my car. Was getting oxiplatin, now dr. has switched me to irinotecan. So far, my neurologist doesn't seem to have an answer, am going to seek 2nd opinion at my local cancer center treatment facility. Keep positive thoughts. Love each day

mopar
Posts: 1948
Joined: May 2003

I too had Carboplatin and Taxol AND neuropathy. It has subsided greatly, I believe mostly due to die and exercise. It helps to rejeuvanite nerve endings, although maybe not completely. I would suggest reading on an amino acid called L-Glutamine. It helped me a great deal and is being used for this very reason. I had the burning, numbness, tingling, everything. Neurontin did not help - pain meds were temporary. I also tried heat, then it made it worse so I tried ice packs. Felt like I needed to massage my feet, hands and arms, but when my husband did it made it hurt more. So I understand what you're feeling. Will try to get some website info for you. Hang in there!

rockgirl
Posts: 3
Joined: Nov 2003

My husband is currently on Taxol and by the 3rd round was beginning to experience neuropathy in hands and feet. Drs began giving him iv of Amofostine right before the Taxol infuses and it has helped alot. Also we are now using acupuncture and altho I do not understand it - it is working wonderfully! We are being treated at the Cancer Treatment Centers of America and they are also giving him naturopathic and supplements including B6 which is really supposed to be very helpful.

KP23
Posts: 1
Joined: May 2008

Hi- My father was diagnosed with unknown metastaic cancer in January 08- he has had 4 rounds of chemo- taxol/carboplatnin- after his 3rd round he started to develop the pain in hands and feet a tingling, burning sensation. He has trouble walking because he can not feel his feet and he has stopped driving because it is hard to hold the steering wheel and feel the pedals. His Oncologist recommended trying to get Amofostin approved by his insurance company to assist with the neuropathy- did you have a hard time getting this approved? Any information or help you could provide would be wonderful. My mother and I are his only caregivers right now and it is very hard to watch him in constant pain from the neuropathy. I think this might be the answer to the problem but we can not seem to get this approved. Thanks KP

aminmi
Posts: 8
Joined: Oct 2003

I was on 200mg of Vit.C per day for neuropathy during chemo. It seemed to help.

lneuma1's picture
lneuma1
Posts: 14
Joined: Feb 2003

Neurontin, L-Glutamine, and B-6. The latter 2 can be found Over the Counter. I had neuropathy from high dosages of Taxotere. Burning (from the inside out) of hands and feet and joint pain nearly incapacitated me. It took about 2-3 months of twice daily dosages of the above to "kick-in," but they finally worked. My toenails and fingernails fell off, but all blistering and numbness and pain finally went away. L-Glutmaine can be found at Genral Nutrition Ctrs or Body-Builders suppy store (for adding muscle mass, I guess). It's a powder you add to a beverage and it tastes like baking soda, so get a flavor. I also recommend adding it to Gatorade (for the potassium and electolytes) and for daily pep-replenishment trying something called Emergen-C ( a high-C and electrolyte boost). 7 months since last Chemo treatment and neurpathey g-o-n-e. Can't completely say the same for Chemo-brain...but I'm not in pain...I say if you can get past the pain you're in the clear!

Stellamary
Posts: 8
Joined: Jan 2004

Stella Mary: to Ineuma - My Aunt just got me a bottle of L-Gluatmine 500 mg capsules. Is it better to take powder; how much concentration do you get from the powder; how many times a day do you take it. My bottle says to take on empty stomach or one hour before eating.

Do you know of anyone who is on crutches because of this neuropathy?

lneuma1's picture
lneuma1
Posts: 14
Joined: Feb 2003

Stella Mary: Definitley use the powder form, a huge scoop, twice a day mixed with liquid. Chug, baby! It's like, 10 GRAMS as opposed to the milligram dosage in capsules...you never be able to get enough pills down that way and you'll pay too much. It's been awhile, I am now one year out from my last chemo. (YAY!!!) I am here to say all these symptoms WON'T last forever, REALLY...HANG IN THERE! No more Neuropathy (knock on wood) for me and Yes, I had it so bad for awhile I couldn't walk at all, forget the crutches...my feet were so burned they peeled twice. My onco had to take the next dose down or I wouldn't have survived the chemo, I would have stopped. I still drink gatorade for the electrolytes! (I think it's an emotional crutch at this point) The L-glutamine was prescribed by my Onco because of the high dose of taxotere I was on, and she had read beneficial results of it in a study. It provides a protective coating to fried nerve ending sheaths. Hope this helps. Sorry it took me awhile to get back on here. Hope these boards help you as much as they helped me!---love and prayers, Laura

lneuma1's picture
lneuma1
Posts: 14
Joined: Feb 2003

Stella Mary: Definitley use the powder form, a huge scoop, twice a day mixed with liquid. Chug, baby! It's like, 10 GRAMS as opposed to the milligram dosage in capsules...you never be able to get enough pills down that way and you'll pay too much. It's been awhile, I am now one year out from my last chemo. (YAY!!!) I am here to say all these symptoms WON'T last forever, REALLY...HANG IN THERE! No more Neuropathy (knock on wood) for me and Yes, I had it so bad for awhile I couldn't walk at all, forget the crutches...my feet were so burned they peeled twice. My onco had to take the next dose down or I wouldn't have survived the chemo, I would have stopped. I still drink gatorade for the electrolytes! (I think it's an emotional crutch at this point) The L-glutamine was prescribed by my Onco because of the high dose of taxotere I was on, and she had read beneficial results of it in a study. It provides a protective coating to fried nerve ending sheaths. Hope this helps. Sorry it took me awhile to get back on here. Hope these boards help you as much as they helped me!---love and prayers, Laura

lneuma1's picture
lneuma1
Posts: 14
Joined: Feb 2003

Here's a link to a study conducted in Japan, concerning chemo-induced Neuropathy and treatment with L-Glutamine (select one big, long line):

http://www.asco.org/ac/1,1003,_12-002489-00_18-002002-00_19-002872,00.asp?cat=Lower+Gastrointestinal+Cancer

Also, another about L-Glutmamine treating other side effects of Chemo/Radiation:

http://www.thorne.com/altmedrev/fulltext/glutamine4-4.html

---L

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

Neuropathy, 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 goups 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 damged 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.

juneaugirl
Posts: 12
Joined: Aug 2004

I did 6 rounds of taxol and carbo and had a fair amount of neuropathy, constipation and chemo brain. No one has mentioned what my oncologist advise for the neuropathy, vitamin B6. I was told I could take up to 500 miligrams a day to help prevent permant nerve damage. It did help. I continued to take it for a few months after I finished chemo until the symptoms let up. Just be careful of taking such a high dose for too long, as prolonged high doses can also cause nerve damage.

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