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Neuropathy and Oxaliplatin Revisited

westie66's picture
westie66
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Joined: Jun 2010

Hi all neuropathy sufferers: Now I know what you are all talking about. I had very little neuropathy with Cycle 1 of folfoxfiri (or whatever the word is). I took 2 daily VitB6, L-glutamine, and cal/mag. Today I had cycle 2 at a reduced irenotecan treatment (and maybe reduced oxaliplatin). All I can say is "oh my". The neuropathy started almost immediately after the injection of the oxaliplatin - many nerve endings prickled, my lips felt like they were falling off my face, my pupils dilated, my hand (right one) turned into a claw with fingers bobbing up and down, sweating, the entire enchilada. By the time I got home the neuropathy was worse (but not unbearable) - when I was taking 3 L-glutamine pills (going on the powder tomorrow) with lukewarm water my jaw clenched and my throat closed up (well, not physically but certainly felt like it so that the pills stuck in my throat. Luckily I had read posts here and knew not to panic (but I oh so wanted to!). Felt completely like I was high on something! There is a silver lining - my feet are OK. I wear the 5FU pump until Thursday. I'm going to do the 5 grams of L-Glutamine tomorrow and drink lots of fluids to flush the system. When you take cisplatin (I did that route last year), they inject a strong diuretic to flush out the kidneys right away. Maybe I'll add my high blood pressure diuretic pill tomorrow.

I do have SAMee but was warned about taking it during chemo.

However, thanks to this site, I know lots of others have gone through this so I'm not alone (although it doesn't appear to be a routine treatment yet in Ontario at least). But why can't they come up with a pill to curb this like they have for nausea?

Cheryl

An added note - the diarrhea is coming back - more white rice and lomitil!

Annabelle41415's picture
Annabelle41415
Posts: 6477
Joined: Feb 2009

Wish you could get away from any symtoms but it's hard not to. Glad that you are taking what you are to minimize symptoms. Always tell your doctor what happens to you when you experience anything. Hope that your poopies get controlled too :)

Kim

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear cheryl,
sounds bad after number 2, my neuropathy got worse after 12.
be guided by your onc, you are doing so much to help yourself.
the diarrhea for me was the main battle.

at least all these issues gets your mind off crc

hugs,
pete

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BettyJoM
Posts: 86
Joined: May 2011

Cheryl, my neuropathy only got bad towards the end, like maybe treatment 10. My onc is great, he wanted to stop the remaining 2 but I said no. My feet are the worst. its different for everyone I guess. Just make sure you tell them everything and Hang in there

Betty Jo

Marianne313
Posts: 124
Joined: Mar 2011

Hi,

Would you mind going into a bit more detail regarding what you mean by "my neuropathy only got bad towards the end"?

My aunt is supposed to start on oxaliplatin as well as two other drugs (not sure when) and I'd just like to have as much knowledge as possible. I do realize that everyone is different but I'd like to know anything that MIGHT happen just so IF it happens to my aunt I can reassure her somewhat.

Thank you
Marianne

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abrub's picture
abrub
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is "first bite syndrome" where on the first bite of food, pain shoots through the jaw/cheek. It can last up to a minute, and can be blinding, but then subsides, and subsequent bites of food are fine. It's just when starting to eat after any break (for me, of greater than 15 minutes.)

It's not a common side effect, and so I wasn't warned. However, it was quite startling, and started immediately with the Oxaliplatin drip, day one, for me. You can tell your aunt she might have jaw pain on her first bite of food if you want to warn her, but don't describe it as I have. Hopefully, she'll be like most people, and have no problem, but at least if she does, she'll know she's not going crazy!

Also, more common, if drinking something cold, it may feel like she's swallowing shards of glass, or her throat may feel like its closing. This is more common (hence, I didn't have that side effect, tho cold food/drink was uncomfortable). Keep those foods and drinks at room temp; think about using plastic flatware (metal can feel cold and painful.)

Best wishes to you and your aunt,
Alice

Marianne313
Posts: 124
Joined: Mar 2011

I read this stuff and I cry. I have so much respect for all of you who have gone through this. My heart breaks each time I read a story here, but at the same time I know I am learning what I can reassure my aunt about and I thank God that I found you guys and this site, although heartbreaking, it is also reassuring to me and so so helpful. I just wish I could remember everything so I could/can reassure her when/if this starts with her. The Dr. did tell her that cold stuff would cause much discomfort to her throat. Sad because she always chews on ice :( guess she will have to break that habit and find a new one to take it's place. (I think the ice chewing is due to the fact that she quit smoking a month before she was diagnosed) Better late than never they say, but I do wonder what possible difference it makes for her now.

Thanks to everyone who responded to my question....after posting this I will take more notes so I have them handy.

Marianne

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

HI Alice and all: Yes, Alice, I definitely had that but luckily had read your earlier post (a week or so ago) and knew what it was. I get it every time I start to eat and it is an interesting feeling to say the least but it goes away right away and I can continue eating. As long as one is prepared for that and for the throat closing thing, and you know it isn't really happening, only feels like it, you relax and say, yup, this will pass. Luckily everything I described on my original post has now subsided, just a tiny bit of neuropathy. I am taking my L-Glutamine in powder form (5 g/day) - luckily I bought it right away. The diarrhea is under control now that I have lomotil. But I am scared to go off the "white" foods. I did have a bit of Kraft Dinner yesterday (I'm addicted to it from graduate school days when it was all I could afford!) and it went down OK and didn't set off any reactions. The baby's diaper rash cream is a god-send - use lots!
So all in all a good day today, sunny, warm (not the 100 it was yesterday even up here in Canada), and breezy. The pump comes off tomorrow, the Neulasta shot on Friday. Thanks so much everyone!
Marianne: I think it is good that you will know what COULD happen but might not. So you can be ready for it to help her. She may have none of these things but now you know what to have on hand. The key for me was to relax when my fingers started jumping around and my lips felt like they were falling off my face. Relax, watch some TV, don't think about. You'll be a big help to her.
Cheryl

abrub's picture
abrub
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The follow-up to my tale is that I am now doing extremely well, and have a great prognosis (from Stage 4). Yes, I have some residual neuropathy problems. But for the most part, I live a normal life - walking, bicycling, kayaking, curling (on ice). I can eat anything, and I have no restrictions, so while treatment is extremely difficult, there is another side.

Your aunt is lucky to have you to help her get through all of this.

Take good care,

Alice

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

X2,,,,...
Never had it this bad (numbness) till week or 2 after rd 12. Wondering now if I went back to work to early. Hard to perform some minor tasks.
Will it end? My worse symtom.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Gosh now I'm worried that mine started so early in my treatment (right after cycle 1). Are you taking L-Glutamine? Lots of posts on this on another topic line - people reporting it gone after 3 months, some not even after 5 years. It seems something that needs much more research to me. Now for my L-Glutamine "drink" ...
Cheryl

micknh's picture
micknh
Posts: 4
Joined: Jun 2011

Like many others I didn't have real problems with neuropathy until my last treatment of oxy. Because I did really well tolerating the bi-weekly oxy and 5fu no one ever said anything. Of course I was also particularly stubborn because I really just tried to pretend that I was doing everything without a problem so my kids wouldn't worry.

It has been about 8 months since my last treatment and six months since the reversal of my illeostomy. For several of those months I was taking Gabapentin which was supposed to help with the neuropathy until a neurology consult said that one of the side effects was swelling of extremities. Since I have started using lyrica the neuropathy symptoms have seemed much better or at least better controlled. I just need to cover my ears when I see the ad on TV.

PhillieG's picture
PhillieG
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Glad to hear that you didn't have it too bad with the side effects. Oxaliplatin can have some very positive results for many with minimal permanent debilitating side effects. At times I had to suck it up too to "protect" the kids. It's mainly a non-issue but that's because I try to keep it that way.
Stay well
-p

micknh's picture
micknh
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Joined: Jun 2011

I had a colonoscopy this week which was clean. I have had two great days without bathroom issues and only wait for them to start up again

westie66's picture
westie66
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Joined: Jun 2010

Hi: Great news! You're on your way!
I'll check out the drugs you are taking if this neuropathy gets worse. Why do you have to cover your ears for the commercial? Too loud or the content?!
Cheryl

micknh's picture
micknh
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I am too prone to suggestion. If I heard the side effects I would be sure it was happening to me

provencegirl
Posts: 1
Joined: Jun 2011

Hello Westie66,

Just thought I would share some info regarding the neuropathy. I've been on chemo for 6 sessions now and started feeling the neuropathy by the second treatment. My Oncologist suggested trying a supplement that has helped quite a bit (i'm on the oxiplaten)thought perhaps you may not have tried this yet. It's called Alpha-Lipoic Acid & I take 600 mg a day. Within a couple of weeks of taking this I noticed a big difference in the finger tingles & the throat sensation really went down as well. Hope this may be of some help to you.

D

Kathryn_in_MN's picture
Kathryn_in_MN
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What you are describing isn't just neuropathy. It sounds to me like you might have the rare syndrome that I had from oxaliplatin. It causes all sorts of troubles - including with your eyes and face, throat and neck. Those with this syndrome often have allergic reactions to oxaliplatin (I did). Be very aware of this for your next infusion, and if you don't have someone with you, make the chemo nurses keep a close eye on you. I am not saying this to scare you, but to let you know that what you are describing can be very serious. Watch for hives or redness in chest or face, or any swelling of lips, tongue, or throat. If you start to feel "off" tell the nurses right away. If your face freezes in weird positions, your heart starts pounding hard, your head feels like it is going to explode - any of those things - speak up immediately.

INSIST they slow down your infusion time to 4-6 hours. If you are getting it in 2 hours, your body just can't handle that rate, if you are having the problems with your face and eyes. Mine had to be slowed to 6 hours - I couldn't handle it any faster than that.

Standard peripheral neuropathy that you get in your feet and hands from oxaliplatin is different than what you are describing. Once you start getting it in your feet you will see the difference. I know I shouldn't say "once you start getting it" because everyone is different, but reading what you've written so far, I think it is very probable that you will get it. It does take a while for the chemo to start damaging the nerves, so it is rare to have neuropathy issues until after a few treatments. Often neuropathy continues to get worse after stopping oxaliplatin, before it then starts to get better.

The throat thing when drinking is something "normal" that happens to most patients on oxaliplatin. Some are more sensitive than others. For some they just can't have anything very cold. For others, even room temperature can be too cold.

pete43lost_at_sea's picture
pete43lost_at_sea
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glad you kept this neuropathy theme going.

i just wanted to share some good news that my fingers and feet are noticably better.

its such a relief.

not sure whats helped, but i will stay on my diet, juicing, tea and supplements.

i hope yours improves aqs well.

hugs,
pete

westie66's picture
westie66
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Hi Pete and Kathryn and all: You know, that is what I was beginning to wonder. The nurse I have once a week thought it sounded almost like a seizure response. I'm so glad you warned me. I'm in Toronto right now getting my little dog but I'll phone my oncologist nurse tomorrow and tell her. I had thought of asking the oncologist to slow down the infusion next Tuesday (but I have to pay $100 an hour for the privilege as well as the chemical so was trying to avoid it!). I'll alert the oncologist on Monday and get him to warn the chemo nurses on Tuesday. I do have alpha linoleic acid so will take that and I'm taking 5 grams of L-Glutamine. The neuropathy has abated a lot now thankfully but the diarrhea has not (from the irenotecan). Even lomotil is not helping much! Another 10 lbs lost.
Thanks, all!
Cheryl

abrub's picture
abrub
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Cheryl,

Just to let you know, the recommendation is for Alpha LiPoic acid, not Alpha LiNoic acid. Different chemicals.

The Alpha Lipoic Acid has helped me as well. I was up to 1200 mg/day (600 twice a day - with meals worked best for me.)

Alice

ron50's picture
ron50
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I have just come from my rheumatologist. There is a conflict with the nephrologist. My joints are an absolute mess, everything from hands to toes have swollen and inflamed joints. My nephrologist needs me to do a 24 hr urine collection to monitor my protein loss. If it has risen he wants to do another kidney biopsy. He thinks I may have some sort of vasculitis. Trouble is my rheumy wants me to start Imuran for my psoriatic arthritis. The problem being that Imuran is also used to treat renal vasculitis. If I start the drug it may stuff things up for the neph. So I remain in pain and limbo. Imuran is a front line transplant drug to stop rejection. I told my rheum that the immuno-suppressants have cost me several teeth already and also that a spot had come up on my face in the last few months. He took one look and said it has to come of asap. I'm sick of all of it. Ron.

pete43lost_at_sea's picture
pete43lost_at_sea
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hi ron,

i know one thing ron, you deserve a break, it just sux you going from one thing to another.

its just a suggestion but have you considered a plant based diet for say 6 months to see if all the claims that helps many medical problems is true. its most peoples last option, but the stories i have heard are promising. just throwing it out there.

i just hope whatever you try really helps.

hugs,
pete

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pete43lost_at_sea's picture
pete43lost_at_sea
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dear gracie,

thanks for mentioninh ala, it slipped off my radar re neuropathy.

from the net.
Alpha lipoic acid is made by the body and can be found in very small amounts in foods such as spinach, broccoli, peas, Brewer's yeast, brussel sprouts, rice bran, and organ meats. Alpha lipoic acid supplements are available in capsule form at health food stores, some drugstores, and online. For maximum absorption, the supplements should be taken on an empty stomach.

based on these facts i am glad my daily veg juice has broccoli and sometimes spinach and or brussel sprouts.

had my reflexology today, and my feet were significantly more sensitive.

so its good news for my neuropathy, still not gone but hands almost normal again and feet
well livable.

hugs,
pete

marqimark's picture
marqimark
Posts: 242
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Well after reading this thread, I realise I found this site too late. My last treatment was in Oct, 2010.

I took six or seven meds for nausea, one for diarrhea, one for hiccups, neulasta shots, one for heartburn, prescrition for potassium, a cocktail med for mouth sores, meds for thrush, pain meds because of the car wreck, Rx for sleeping, but nothing for the prevention of neuropathy.

Now my hands and feet are numb and painful 24/7.
I also can't feel my flow when I urinate and sexual sensations are numbed.
I have lost sensation in my anal area, really wierd there.
Flare ups as I call them, cause the neuropathy to became really uncomfortable.

Ocassionaly, well today was the second time, my upper lip swells and reddens and my whole body feels rashy. Never happened before chemo, but I could have developed an allergy to something that I have always tolerated in the past I guess.

I will ask the doc for gabapentin and try the alpha lipo.
Should I try the Gluten at this late date??

Thanks for all the reads

Mark

abrub's picture
abrub
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and it was helpful. I was advised to add the Glutamine 2+ years post-chemo.

It's worth a try.

pete43lost_at_sea's picture
pete43lost_at_sea
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dear mark,

i too had the sex and nerve thing around the bum. most disconcerting.
not sure if its neuropathy or issues with postop stuff or even chemo.

your body has been hammered. mine too. i mentioned not being hard enough to my tcm doctor and he said that for what i have been through chemo/rad operation six months folfox i am lucky to have an erection at all. and for some patients it can take 18 months post chemo for sexual performance to return. i said gee thanks. i have always consider a healthy sex life to reflect how my bodies going at any time with treatments. well for me personally.

for neuropathy i am doing vit b complex, fish oil, l-glutamine, alpha lipo, mitolift, l argarentine, cal/mag. i hate neuropathy. heaps of other supplements.

my neuropathy has been getting better. its two months post chemo for me.

try reflexology, its helped me to stimulate the blood flow in my feet.

just goodluck coping with the lefterovers.

hugs,
pete

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westie66's picture
westie66
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Hi all: I am still amazed that neuropathy seems to be the biggest side effect complaint from the Oxaliplatin and there is still very little research on it!!!!!!! I don't get it. The brochure I have from the company that makes it says right there that this is a big side effect but don't give any advice on what to do about it other than wear gloves when handling cold things, drink stuff at room temperature (tough when it is over 100 today in LOndon ON - I so want ice!), feeling goes away in awhile, well, maybe not in some people, etc. etc. etc. Maybe we should all write the drug company that makes it and plead with them to come up with relief (and make them look like heroes).
I'm going to slug down 5 grams of L-Glutamine with a side of Alpha Lin......., B6, and cal/mag and do that every day. Lily, who reports on the gallbladder cancer discussion board, got severe neuropathy when she did the cisplatin/gemzar chemo 5 years ago and still takes L-Glutamine but in tablet form. Helps her even now.
I'm going to go and breathe deeply for awhile to let out the stress from hearing about all of us that are suffering with this side effect. Then I'm going to write the drug company.
Cheryl

pete43lost_at_sea's picture
pete43lost_at_sea
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dear cheryl,

this is interesting

http://www.mcvitamins.com/Chemotherapy-neuropathy.htm

hugs,

pete

pete43lost_at_sea's picture
pete43lost_at_sea
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dear cheryl,

this is interesting

http://www.mcvitamins.com/Chemotherapy-neuropathy.htm

hugs,

pete

westie66's picture
westie66
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Hi: Thanks, Pete. I'm going to read it right away. I now have the address of the oxaliplatin maker here in Canada and I'm going to write them, no email them. This is too important.
Cheryl

pete43lost_at_sea's picture
pete43lost_at_sea
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i'd love to know what they say.
hugs,
pete

emtwoods's picture
emtwoods
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OK I am so confused my husband gets his first does of FolFox tomorrow and he already suffers from neuropathy so now it is going to get worse? What should he take, it sounds like nothing will be sugested.

pete43lost_at_sea's picture
pete43lost_at_sea
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just search on peripheral neuropathy pete in colorectal.
we have had many good discussions on this.
different people mention different supplements.
sometimes we have links to journals.

you have time to research and read and ask.
with folfox the neuropathy is cumulative. but it takes months normally for it to show.

hugs.
pete

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi all: And sometimes you get it right away like me. Anyways, I've downloaded the product manifesto (66 pages long!) and I'm going to scour it for all the neuropathy stuff. They don't accept emails on reactions to products but there is a 1-800 phone number I'm going to call on Monday when they open. In Canada, the company is Sanofi-Aventis Canada and oxaliplatin goes by the name Eloxatin. Good advice to talk about it with your oncologist right off the bat, especially if he already has neuropathy (from diabetes?). Unfortunately my oncologist hasn't seen too much problem with it but the oncologist nurse had.
Yesterday morning the sink filled up with hair - devastating! Today bought a wig!
I suspect I am seeing these side effects because it has piled up on top of the cisplatin I had for 6 months just previous to this chemical stew.
Cheryl

marqimark's picture
marqimark
Posts: 242
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HUGS! HUGS!!!

The ONLY side effect of OXAL I did not have was hair loss.
Still had to shave my head every day.

You will make it through the treatments.

Had a co-worker today say he could not go through what I went through until he saw what a comeback I have made physically.
I guess I looked pretty bad.....

Prayers

Mark

westie66's picture
westie66
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Hi Mark et al: I suspect my hair loss (breakage really) was cumulative because of the 12 weeks of cisplatin/gemcitibine I had previous to this folfoxfiri treatment regime. Yup, you bet I'll make it through the treatments. Once you get a side effect, there is always a pattern and always a way to alleviate the worst of it. I received a report from the Canadian company that manufactures the oxaliplatin (Eloxatin in canada). 92% of patients in clinical trials got some form of neuropathy, about 10% of them serious problems. Severe diarrhea was a common side effect because all of the chemicals used in folfoxfiri cause it. Fatigue was common (44%) but mostly in women. To me the scariest is the neuropathy. About 20 pages of the report was devoted to it. They have done no research on ways to alleviate it. They caution throughout that it can be long-lasting.
If anyone wants me to email it to them, please email me and I'll send it.
Thanks for the encouragement! This too shall pass!
Cheryl

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Ohhh Cheryl. I'm so sorry. I have been off the Oxy since the end of February and my feet tingles really didn't get bad until after I got off it. Weird I know. My onc didn't like the symptoms I was having and switched me at 6 treatments to Folfiri. Now those darn lower extremity symptoms go slightly up my calves but I'm dealing with it like you seem to be. Still stiff as heck in all my joints tho.

Gail

pete43lost_at_sea's picture
pete43lost_at_sea
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my neuropathy getting better day by day.
maybe the diet, maybe the supplements, but i am greatful.

started taking larger dose of ala.

taking mitolift, alpha lipoic acid, l glutamine, b complex, largentine
specifically for neuropathy.

remember to try the reflexology for feet and hands.

hugs,
pete

westie66's picture
westie66
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Joined: Jun 2010

Hi Gail and Pete and others suffering with this: I saw my oncologist this morning and he is more worried about the diarrhea resulting from the irenotecan/oxaliplatin/5FU combo than the neuropathy - until I told him about the nasty more than neuropathy side effect I had during my last treatment. He is adjusting the chemo soup for tomorrow's treatment - perhaps slower infusion, perhaps less drug. I just don't want him to take me off anything in case the drugs are working! One copes.
I had a ball at the cancer centre wig/scarf take out this morning. You can get a nice wig and all sorts of scarves, turbans, etc. for free on loan. Everything looked like a hat on me but the scarves are cool and rustic.
A colleague of mine did the reflexology thing during his colon cancer treatment and he highly recommends it, too. Thanks, Pete. I'm taking all on your list but the mitolift - don't know what that is.
I'm still confused why drug companies don't test their chemicals with things that could relieve side effects, especially long-lasting side effects. The company that makes oxaliplatin here doesn't but they do test all sorts of combinations of the drug and the synergistic effects. Mystery to me.
Cheryl

pete43lost_at_sea's picture
pete43lost_at_sea
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leveraging PN info, treatments and tips from diabetic world! why not ?
lots of overlaps on alternatives.

i added this here, but will make it a separate post.

http://neurotalk.psychcentral.com/thread22794.html
story about PN and diabetic weight loss and vegan and reducing PN

http://www.reversingdiabetes.org/HowitWorks/Research.aspx
vegan diet helps 50% diabetics. refers to kane study. shows how diet and body and
disease are linked. diet not relevant to cancer. can we learn from diabetics ?

http://health.limboland.net/medical/diabetic_neuropathy/diabetic_neuropathy.html
freezing the nerves surgical option.

http://www.liveingoodhealth.info/article/treating-painful-diabetic-peripheral-neuropathy/
this article mentions acetyl-L-canitine which is one of the supplements my naturopath prescribed. also recommend exercise. see key tips below.

hope this helps, its interesting to consider. comments ?

hugs,
pete

To help treat painful peripheral neuropathy without prescription medications, consider the following tips:

1. Keep your blood sugar in control: Studies have shown that when blood sugars remain high, or roller coaster from high to low, peripheral neuropathy will worsen.

2. Exercise. This is probably the last thing you wanted to hear. Exercise helps increase circulation and stimulates the growth of new vessels which help slow the progression of the neuropathy. Exercising also helps to increase your pain threshold and to provide a distraction from the nerve pain in your feet.

3. Eat healthy. Besides helping to control your blood sugar, eating a wide variety of fruits and vegetables will add anti-oxidants to your diet. Anti-oxidants will combat the damaging oxidative effects glucose has on your nerves. In particular, try dark-green, leafy vegetables, yellow, orange, and red fruits and vegetables, citrus fruits and tomatoes.

4. Try red pepper powder. Capsaicin is the active ingredient in chile peppers. When applied to the feet it acts as a counter-irritant and can help decrease neuropathic pain. Capsaicin can be purchased at your local drug store. If you cannot afford capsaicin, try mixing 1 tablespoon of dry chile powder with 2 tablespoons of baby powder. Place the mixture in a sock and use the socks at night.

5. Try alpha lipoic acid. ALA is an effective anti-oxidant that has been shown to relieve pain associated with neuropathy in multiple studies. To help relieve pain, the dose must be at least 600mg a day. It is advisable to start with a lower dose, as higher doses can cause nausea, stomach upset, fatigue, insomnia and can lower blood sugar. In general, ALA is a safe supplement.

6. Try gamma linolenic acid. GLA is an essential fatty acid found in evening primrose oil. Most of the studies have shown modest results, but the possibilities are still encouraging. Take 360mg/day. Many indications require higher dosages, but side effects with long term use at higher doses may include inflammation, thrombosis (blood clots), or decreased immune system functioning.

Treating painful diabetic peripheral neuropathy is very difficult and many of the above mentioned therapies should be tried and combined. Don't expect any "cures" and make sure you give each therapy a chance to work.

Some other studies. that maybe relevant. Note GLA may not be good for colorectal re bloot clot and decreased immune system.

111 patients with mild diabetic neuropathy were given either supplements of the fatty acid gamma-linolenic acid (GLA) or placebo. After one year there were significant improvements in 13 parameters in the GLA-treated patients.Keen H et al: Treatment of diabetic neuropathy with gamma-linolenic acid. The gamma-linolenic acid multicenter trai group. Diabetes Care 16(1):8-15, 1993.

22 patients with diabetic polyneuropathy were given either supplements of gamma-linolenic acid (GLA) or placebo for 6 months. The GLA-treated patients showed a significant improvement in symptom scores. Jamal GA et al: The effect of gamma-linolenic acid on human diabetic peripheral neuropathy: a double-blind placebo-controlled trial. Diabet Med 7(4):319-23, 1990.

pete43lost_at_sea's picture
pete43lost_at_sea
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your onc is right, diarrhea will kill you fast.
been to ER with it myself, at the same time my onc had
another crc with bag on chemo in intensive care. very ill.
make it your focus.
hugs,
pete

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Thanks, Pete. My oncologist reduced the irenotecan amount again as well as the infusion rate and amount of oxaliplatin. That helped a lot re the neuropathy - I didn't get the tremors during chemo this time (just got back from 5 hrs of chemo). Talked with my dietician and he's hoping that this will shorten or lessen the irenotecan effects. I try to drink as much fluid as I can as I don't want to end up in emergency (spent 23 hrs there during the cisplatin/gemcitibine chemo)! And thanks for the information you provided in your other discussion thread. Yes, diebetics, plus fibromyelgia, plus lymphoma folks all get neuropathy. Now, back to the white rice! And a good BBC mystery on video, Inspector Lewis.
Cheers!
Cheryl

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

Glad the slow infusion helped with the tremors.
I always hated those.

In cool weather I was still cramping in my arms after two days.
Had to pry my grip open so the person I was handing something to could get it from me.

Good luck and Hugs

Mark

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Mark and all: Yes, the reduced amounts of both the oxaliplatin and irenotecan has really helped - very little neuropathy and none of the dreaded diarrhea yet. And I must give credit I think to the L-Glutamine 5 g/day, B6, Cal/Mag, and alpha lin.... . I just know they have helped too. So a better week all around than the last treatment. Pump came off today so I can safely go to the dog park to get my dog some exercise.
Take care, Cheryl

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