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anyone have any ideas about how to reverse residual neuropathy?

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

sisters,

i have some neuropathy in my finger tips, toes and balls of my feet. any one have any kind of suggestions that could reverse these? suggestions do not have to be scientifically based, can be anecdotal.

thanx, and sisterhood,
maggie

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

Maggie

Starting about 3 montghs after my chemo ended, I took Alpha Lipoic Acid, 600 mg/ day. It did seem to help but I stopped after about 9 months as I wasn't seeing any improvement.

I recently saw a neurologist to evaluate my balance as that seems worse. I felt it was due to the neuropathy but my oncologist did not and suggested I see a neurologist. So I did....and he concurred with me after doing a very thorough neuro eval. He had some machine that he put on various places on my leg, ankles, toes, etc. and said I have no apparent sensation in many of the toes, the ball of the foot and the outer edges of the feet and diminished sensation in my ankles. He definitely feels it is a result of the chemo.

He told me that my balance will get worse as I get older as that is "normal" part of aging. He suggested I try B vitamins (B12, B6, Folic and Thiamine) but felt at this stage it probably would not help. He also told me it takes 3 months before I would notice a difference...but if I could not see an improvement after 3 months, to quit taking them and save my money. Since I decided that I probably would not take them, he did not give me a script as he mentioned dangers in taking too many of the B vitamins, particularly Folic acid. And since I haven't had any levels taken do I really need more???

It is rarely so bad that the pain interferes with my activity or sleep. However, the balance is a problem so I just try to be care, watch what shoes I wear, use a walking stick on uneven terrain in particular and do some exercises that are to help with balance.

Wishing you the very best and am hoping you find some answers!

Karen

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

This is from a neuropathy society

http://www.pnhelp.org/pdf/pubs/Alternative_Treatments.pdf

Sincerely hopes it proves of great healing help

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

Claudia....I have never seen such a list of options! Surely some of these will help! I like the non-drug ones the best!!

Many thanks, Karen

P.S. it is so fun to see your paintings grace your page....such talent!

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

wow, lots of different possibilities. like karen, i'll try the alternatives to see what makes a difference. i actually don't have pain, just the numbness, which isn't horrible, but would love to have it go away.

i, too, like your art, alot, clauida. hope you get back to painting soon.

sisterhood,
magie

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

One of us could start at the top of the list and one at the bottom and we can meet in the middle....how does that sound? :-)

I will let you know if something works for me...and please let me know if you have any success. Decided I should just start with one thing and try that for awhile...if I try too many things at once I won't know what works and what doesn't.

Will have to plan my "research" now!

Hugs, Karen

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

good idea, though won't be able to research until end of chemo. can only do so much at a time. should be ready by mid-late september, though hope to be done with chemo in the next few weeks.

sisterhood and hugs,
maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i think i'll start with getting my b 12 level checked, and go from there. i know i've been deficient in vitamin b in the past. i'll check out vit b6 as well as folic acid, thiamine, etc. maybe a good b complex vitamin would be sufficient with some l glutamine. that's the plan, i could even start before chemo ends. we'll see.

let me know what you decide to do.

sisterhood,
maggie

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

You know, I don't have neuropathy so I just looked for a site that had info and seemed legit, I didn't read any of the infor because it didn't apply to me and I was just trying to help you out. I liked your idea of starting at the top and bottom and meeting in the middle, but it let me know the list was apparently very long. I had to see what the heck was on the list.

You are not kidding when you say there is lot there. Looks like it includes anything any one has mentioned using in the last 12 decades.

Sincerely hope some of it helps you. Each person is so different, so what works for one won't necessarily work for another. I thought the gin and raisins were at least something that might taste really good in bread pudding, which you could eat with your feet up while watching the sunrise. The mention of methadone rather freaked me out though. Be careful please. Do you want me to keep looking????

Love you both,

Claudia

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

Claudia, Your thirst for info is incredible but the best part is how you are able to find such things. I must not be googling very well! Yes, I thought the gin and raisins was interesting. I suspect if you use enough gin you won't even know where your feet are! :-)

Nope..don't worry....we won't try anything that sounds dangerous, i.e. methadone! Don't need to look anymore as think we have plenty to work on.

Love ya, Karen

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

I LOVE the idea of gin and raisins - especially in bread pudding (organic bread, of course!.
And the comment about using so much gin you won't know where your feet are!
thanks, ladies
Helen)

evertheoptimist
Posts: 140
Joined: Jan 2011

My neuropathy started a month AFTER my last infusion. Turns out, it's not so uncommon. Dr at MSKCC who is the lead investigator of the vaccine trial I am participating in told me that according to their quality of life survey results, neurophathy is worst 4-5 months post treatment and then starts to improve, and takes a year to clear.

I think my worst point is already over (six weeks after it started), and it is much better now. It's mostly my fingers and at its worst, my entire arm would be uncomfortable in the morning or in the middle of the night (never during the day). However, even at its worst, it was a minor annoyance rather than a real problem, so, no biggie.

I had an acupuncture treatment last week, and it seems I am already doing better, but it's really hard to tell whether it's just in my head, or even if it were real, it could be just a natural course of improvement. Hard to tell. I plan to get acupuncture every other week for a few times. If I feel another abrupt improvement from the next session, I will certainly report it to you. Two in a row make it a pattern.

JoAnnDK
Posts: 275
Joined: Jun 2011

I read the interesting pdf that Claudia posted and cannot believe how many of these things I have tried.

Many neuropathy treatments are for pain....but I do not have pain. This is what is so frustrating to me. But like someone said, it is mainly an annoyance — except that I do not know where my feet are in space, so it can be dangerous too.

Neuropathy (pain) started with my first chemo treatment last August then subsided for a while until #4. I started taking Acetyl-L-Carnitine. It did nothing. When that pain finally stopped (such agony) in January, my feet became numb, tingly, cold at night, and hypersensitive on the bottoms. If I step on a cord, I can actually feel the current moving through it. It is spooky.

During the winter, I also started acupuncture which may or may not have done any good. Also tried reflexology which also may or may not have done any good.

I went to physical therapy after radiation in February to try to get back some stamina and work on my balance. The exercises I did for balance seem to have worked somewhat. My PT said everyone over 50 should be doing balance exercises (you can find them online).

I tried quinine (I also have had Restless Leg Syndrome for 25 years), all over the counter pain meds, Vapo Rub, BioFreeze, ice, heat, hot water, cold water, Salon Pas, Cymbalta, Metanx (a prescription medical "food" that I decided after 3 months has too much folic acid/folate in it. And Karen, I was also told three months and then stop if I saw no improvement.).

I have a TENS unit but it did not help, and neither did an electric massager.

My fairly liberal prescription drug company will not give anyone the lidocaine patch unless you have had shingles!

Shoes - I cannot wear any closed shoes...the back must be open so clogs are great. CROCs with fleece liners have saved my life. I have one old pair of nylon sneakers that were always too big and I can wear them. Leather sneakers are too rigid.

I have Nikken insoles but they have little bumps on them and with the hypersensitivity I have, they are unbearable. So I just rest my feet on them in hopes that they will help the neuropathy.

I do not see Epsom Salts listed, but plan to try a foot soak with them.

The raisins and gin "recipe" was first touted as a help for arthritis. I have several friends who do this.

I am hesitant to use Gabapentin/Neurontin because, as my nurse said, it is a "serious drug" and requires weaning and careful titration. I found an article in CURE magazine about making a compounded cream from the drug, so my GP consulted with a compounding pharmacy and ordered some for me. I have been using it for @ 3 months.

With all the different things I was using for all these months, I would say that the neuropathy improved about 50%, but I reached a plateau. I decided to stop the Cymbalta 3 weeks ago and stopped the Metanx also.

The compounding pharmacy came up with a new compound for me and I started it yesterday. The label says "keta+amit+bup+gaba" {I know this is gabapentin}. I am to rub it in 3 times a day and the pharmacist said I should get some relief in 7-10 days. I am hopeful. I am just going to stick with this and maybe try Epsom Salts.

And I am rambling! Sorry.

JoAnnDK
Posts: 275
Joined: Jun 2011

Here are the ingredients in the new cream I am using:

amitriptyline hydrochloride 12%
ketamine hydrochloride 15%
Gabapentin 4%
bupivacaine hydrochloride 2% I think this is a skin anesthetic
decyl methyl sulfoxide -aids in skin permeation

There is actually an ongoing trial for chemo patients who have neuropathy, using two of the ingredients:

Topical Amitriptyline and Ketamine Cream in Treating Peripheral Neuropathy Caused by Chemotherapy in Patients With Cancer

url:
http://clinicaltrials.gov/ct2/show/NCT00471445

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

about my neuropathy (finger tip numbness) so I'd say mine resolved on it's own. I'm 10 months post chemo. While I was on chemo, however, my oncologist had me taking B6 to avoid neuropathy. I don't know if it helped or not, but I do know that what I had was minimal.

And that's all I know.

Suzanne

RoseyR
Posts: 471
Joined: Feb 2011

Dear All,

Because neuropathy was the possible side-effect I most dreaded in starting treatment with taxol/carbo, a month of onine research--and consultation with my integrative doctor--persuaded me that the following might be effective.

And so far, after five treatments with taxol/carbo, I've been lucky (knock on wood!) to have no neuropathy whatsoever.

A prominent oncologist from Sloan-Kettering conceded that neuropathy is more easily prevented than cured, so if any of you are still on taxol, please consider glutamine, Vit E succinate, and/or Vitamin B-6 as follows.

But gradual lessening of symptoms, even once you HAVE PN, seems definitely possible with the right supplementation.

Am pasting here my response to an earlier lament about PN:
___________________________________________

Long fearing peripheral neuropathy as a side effect of my current regime (taxol/carboplatin), I did quite a bit of online research and found some useful information.

Apparently, as even experts from the Mayo Clinic admit, PN is easier to prevent than to treat--although treatment via natural supplements is promising, with far fewer side effects than those often generated by pharmaceuticals such as Neurontin.

To prevent, or minimize, I was advised by a well-credentialed complementary doctor to do the following:

Take a teaspoon of glutamine (an amino acid) in a glass of water three times day. Start the day before chemo and continue during the first three days of chemo.

Be sure my level of vitamin D is at between 30 and 45 (I get my blood checked once a month) and if lower than 30, take 2 to 4 drops of Liqui-D (available online), a highly absorbable form of D3, a day. If taking more than 2 drops a day, best done under doctor's care and only for two to three months until levels come up to where they should be.

Likewise be sure my level of B-12 is at least 500 before starting chemo. Normal range is 200-900, but 500 or more is what you want before chemo because B-12 is one of the catalysts for bone marrow production: healthy red and white cells, and too little B-12 compounds your chances of developing PN. (I try not to wince when I hear the chemo nurse explaining again and again to patients in the waiting room, "we have to postpone your treatment because your platelets are low." Yet how many oncologists CHECK your levels of B-12 before you start treatment?

Take 3 teaspoons of high-quality fish oil a day; the brand recommended was "Finest Pure Fish Oil" by Pharmax. No bad flavor at all; I don't even need to put it in juice.

Of course most oncologists (often with good reason, often with poor reason) tell us not to take ANY supplements during chemo beyond a multivitamin. (the one recommended for me, by the way, is Formula 950, which has no iron or copper, both elements that, according to some recent research, may stimulate tumor growth. (The kind of iron we absorb from vegetable sources isn't harmful, by the way; it's the form we get from red meats and food supplements that can apparently stimulate cancer cells--at least according to some recent research. That's why I was advised to take Formula 950: two, three times a day before starting chemo but while on chemo only two a day, total--lest I ingest too many antioxidants that conceivably could interfere with the efficacy of chemo.

Despite these caveats, several impressive books by Dr. Russell Blaylock (Natural Strategies for Cancer Patients), James Qulllen (Beating Cancer with Nutrition) and Michael Murray (once resident nutritionist for Cancer Treatment Centers of America) all recommend 400 mgs per day of Vitamin E succinate (the dry form o Vitamin E) to minimize peripheral neuropathy; they recommend starting it a week to two before chemo and contiuing throughout the course of chemo, citing clinical studies that show that it mitigates several side effects of chemo and actually enhances the effectiveness of most chemo.

Having taken the preceding as directed, i have not so far--knock on wood--had any symptoms of PN although admittedly am just finishing my third round of it.

ONCE YOU HAVE PN:

There are clinical studies suggesting that alpha-lipoic acid (about 600 mgs a day; start with 300 and build up) can slowly reverse symptoms of PN.

A product called "Nerve Support Formula" touting the importance of a derivative of vitamin B-1, coupled with another B vitamin, has helped thousands to slowly reverse troublin symptoms of PN.

Yet other studies show that daily capsules of Evening Primrose Oil (or borage oil) further help to repair nerve damage.

A final suggestion: One of the best web sites I've found on supplements useful for PN is Life Extension. Granted, they sell supplements, and usually I'm skeptical of advice that comes from any commercial (.com) site. However, their board of advisors (check them out) are very impressive; leading doctors and researchers have created a clinically-based web site with recent research on various nutrients. You needn't even buy their products to access their web site and get their free reports.

Best in our shared ongoing challenge to cope with traditional cancer therapies.

RoseyR

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Rewriter
Posts: 338
Joined: Dec 2009

JoAnnDK
Posts: 275
Joined: Jun 2011

Rosey, thanks for all the info in your post above. Where do you get Formula 950?

I bought Acetyl L Carnitine from Life Extension when I first started chemo. My oncologist recommended it (imagine that! )along with a vitamin that I cannot recall (either a B or D). Neither of these warded off the PN, unfortunately. Many companies make Acetyl-L Carnitine.

You wrote " I'm skeptical of advice that comes from any commercial (.com) site. However, their board of advisors....." I know several doctors who are on various boards of advisors (not just companies that make supplements or drugs, but also medical equipment and other medical products). They get paid a lot of money to allow a company to use their names. They do not necessarily (and most often do not) do anything. So I think your skepticism is probably valid.

Did you know that fish oil is supposedly also good for "dry eye" a condition most of us get when older? I tried two different brands of fish oil capsules and the oil itself, but it all made me feel nauseated.

RoseyR
Posts: 471
Joined: Feb 2011

JoAnn,

Forget the brand name, but Formula 950 is available online: just Google its title and it should come up.

Best,
Rosey

RoseyR
Posts: 471
Joined: Feb 2011

JoAnn,

Forget the brand name, but Formula 950 is available online: just Google its title and it should come up.

Best,
Rosey

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