Handling Neuropathy side effects
Comments
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Alpha Lipoic Acid worked for me
B6 is commonly recommended, but Alpha Lipoic Acid worked best for me. I was advised by an m.d. in integrative medicine to take up to 1600 mg/day (800 twice a day) but found it upsets my stomach, so I've settled, and been happy with 600 - 800 mg daily with breakfast.
I also found that foot massage helped me a lot. You need to keep up with both of these.
Note, other than the B6, which I was taking during chemo (100 mg three x/day) I started the other well after I completed chemo. I've heard good things about acupuncture for neuropathy as well - it is recommended by the Memorial Sloan Kettering Integrative Medicine group for it.
Keep your drs well informed as to the level of neuropathy; your chemo may have to be modified. (I couldn't button buttons, fasten my seatbelt, or fold a piece of paper in half at the worst.)
It has mostly subsided for me; I've resumed the massages, as they've helped recently, and I stopped for several months.
Good luck, and welcome aboard! Lots of good people and good info here!
Alice0 -
Alice, Thanks for the infoabrub said:Alpha Lipoic Acid worked for me
B6 is commonly recommended, but Alpha Lipoic Acid worked best for me. I was advised by an m.d. in integrative medicine to take up to 1600 mg/day (800 twice a day) but found it upsets my stomach, so I've settled, and been happy with 600 - 800 mg daily with breakfast.
I also found that foot massage helped me a lot. You need to keep up with both of these.
Note, other than the B6, which I was taking during chemo (100 mg three x/day) I started the other well after I completed chemo. I've heard good things about acupuncture for neuropathy as well - it is recommended by the Memorial Sloan Kettering Integrative Medicine group for it.
Keep your drs well informed as to the level of neuropathy; your chemo may have to be modified. (I couldn't button buttons, fasten my seatbelt, or fold a piece of paper in half at the worst.)
It has mostly subsided for me; I've resumed the massages, as they've helped recently, and I stopped for several months.
Good luck, and welcome aboard! Lots of good people and good info here!
Alice
Alice, Thanks for the info on both. Actually I'm done with my chemo. The neuropathy hit me 2 months after I was done. Took me by surprise. I've had it now for about 2 months. My dr's are well aware. I just started seeing a neurologist just for safe measure. I'll start with the ALA. Foot massage and acupuncture might be a little tougher since any pressure right is bothersome with the tingling I'm getting right now.
Alice, was your neuropathy mostly numbness? That's how mine started, that lasted about a month and then changed to tingling and some pins and needles. Did your symptoms stay the same or change? And about how long did you experience the neuropathy before it started to subside?
Susan0 -
neuropathy
Hi, sorry to hear about your neuropathy, I would say you probably did a round of folfox. Oxyliplatin is well known for this. I finished folfox in November of 07. It was really bad then, could hardly button my shirt. Only time will tell how much of an improvement you will have. I was probably at 60 or 70% in hands and feet, now after 3 years I'm probably at 20 or 25%. It all depends on how many nerve cells were destroyed and how many were damaged. The damaged cells will repair themselves but the dead ones are gone forever. I hardly notice the neuropathy anymore but I believe what I have will be permanent. I do take B vitamins but I really don't know if they help any. By the way, after stage 3 with 20 of 22 lymph nodes, progressing to stage 4 with lung mets, and 3 years of almost continuous chemo, I am now in remission and off of chemo for at least 3 months hopefully more. Hope you find something or someone out there who can help you more. Take care, hang in there, and may God Bless you, Randy0 -
Mine lasted a while - ISandMb said:Alice, Thanks for the info
Alice, Thanks for the info on both. Actually I'm done with my chemo. The neuropathy hit me 2 months after I was done. Took me by surprise. I've had it now for about 2 months. My dr's are well aware. I just started seeing a neurologist just for safe measure. I'll start with the ALA. Foot massage and acupuncture might be a little tougher since any pressure right is bothersome with the tingling I'm getting right now.
Alice, was your neuropathy mostly numbness? That's how mine started, that lasted about a month and then changed to tingling and some pins and needles. Did your symptoms stay the same or change? And about how long did you experience the neuropathy before it started to subside?
Susan
Mine lasted a while - I still have remnants 2 1/2 years out of chemo. I had lots of pain, some tingling, numbness.
My remnants are tingling and occasional pain in 4th digits - my 4th toes, and my ring fingers - go figure! Occasionally other toes and fingers as well. Mine developed throughout the chemo, getting worse each round.
I am in the habit of wearing very comfortable shoes (I find the "Unstructured" line by Clarks to be excellent.) I was warned that the neuropathy could last up to 2 years, and if not gone by then, it was likely permanent. I guess I'm stuck with it for life, but at least I have a life to look forward to.0 -
Hi!
Welcome to the board. I'm just dealing with neuropathy while doing chemo so I can't really help with late onset. One thing that helps me alot right now while dealing with it is to keep my feet and hands warm. I noticed that I had less problems and then one day it really acted up and the only thing that was different was that I let my feet get cold for just a minute. I am also taking calcium, D, magnesium, and B6. I am planning on adding ALA too. I used to take it regularly but for some reason stopped a couple of years ago. I haven't taken it since my dx or chemo so I will be interested to see if it helps while on chemo or not. I know what you mean about not wanting anyone to rub your feet. ouch! Maybe try to soak them in warm water first and rub them while in warm water? It might change the sensitivity some.
Good luck!0 -
Neuropathy
I'm still dealing with it a year after ending chemo and take the same pills you do. If I don't take the pills my feet go really numb and it's hard to walk. Everyone is different and some people get over with it faster than others, I'm just not one of them. You are right though, the feet are worse. My fingers don't seem to move as fast as they did, but they have gotten better and so have the feet, but it is a slow, slow process for me. Sorry my news isn't so good, but like everyone else, all symptoms are different with each person. Good luck and welcome to the board. Keep posting to let us know how you are doing.
Kim0 -
NeuropathybigCrandy said:neuropathy
Hi, sorry to hear about your neuropathy, I would say you probably did a round of folfox. Oxyliplatin is well known for this. I finished folfox in November of 07. It was really bad then, could hardly button my shirt. Only time will tell how much of an improvement you will have. I was probably at 60 or 70% in hands and feet, now after 3 years I'm probably at 20 or 25%. It all depends on how many nerve cells were destroyed and how many were damaged. The damaged cells will repair themselves but the dead ones are gone forever. I hardly notice the neuropathy anymore but I believe what I have will be permanent. I do take B vitamins but I really don't know if they help any. By the way, after stage 3 with 20 of 22 lymph nodes, progressing to stage 4 with lung mets, and 3 years of almost continuous chemo, I am now in remission and off of chemo for at least 3 months hopefully more. Hope you find something or someone out there who can help you more. Take care, hang in there, and may God Bless you, Randy
Randy, you are right. I was on Folfox. I guess I didn't really understand what the Oxi could potentially do. I expected tingling, I didn't expect this. I am encouraged by what I am reading here from all of you. It may last awhile but it looks like it will probably get better. Maybe it won't go away, but better is better than not better. I am humbled by your journey Randy. You've been through alot more than me and have managed to get through it. An inspiration. Thanks to all of you who have responded. You all have provided me with additional treatments I haven't tried yet but now plan on trying.
Thank you...Susan0 -
NeuropathyAnnabelle41415 said:Neuropathy
I'm still dealing with it a year after ending chemo and take the same pills you do. If I don't take the pills my feet go really numb and it's hard to walk. Everyone is different and some people get over with it faster than others, I'm just not one of them. You are right though, the feet are worse. My fingers don't seem to move as fast as they did, but they have gotten better and so have the feet, but it is a slow, slow process for me. Sorry my news isn't so good, but like everyone else, all symptoms are different with each person. Good luck and welcome to the board. Keep posting to let us know how you are doing.
Kim
Kim, thanks for sharing. Your news is actually pretty good... it's not gone but you said it's gotten better, just slowly. I can take slowly...
Susan0 -
Hi!Lori-S said:Hi!
Welcome to the board. I'm just dealing with neuropathy while doing chemo so I can't really help with late onset. One thing that helps me alot right now while dealing with it is to keep my feet and hands warm. I noticed that I had less problems and then one day it really acted up and the only thing that was different was that I let my feet get cold for just a minute. I am also taking calcium, D, magnesium, and B6. I am planning on adding ALA too. I used to take it regularly but for some reason stopped a couple of years ago. I haven't taken it since my dx or chemo so I will be interested to see if it helps while on chemo or not. I know what you mean about not wanting anyone to rub your feet. ouch! Maybe try to soak them in warm water first and rub them while in warm water? It might change the sensitivity some.
Good luck!
Lori, you're right. Keeping warm is critical. I can't even tolerate cold water from the tap. I don't know how folks who are living in cold temperatures deal with this. I live in Florida and am spoiled by having it be warm all the time. Lori are you taking a multi vit/min supplement or taking the above nutrients in separate pills? I'm sending you my good luck wishes and positive mojo....
Susan0 -
Hi Susan, welcome aboard! I
Hi Susan, welcome aboard! I took oxy in 2008 - I managed to do all 12 rounds, but I do have perm. nueropathy. I have tried many things, but with no benefit. My hands are much better, still tingly and some arthirtus now in both thumbs, dr. said not doubt brought on by the drugs. My feet are a mix of hot/cold/numb and thawing. The best I would recommend is keep trying what is suggested they may work for you! If not, I am finding the trick is to find shoes that I can work in and be comfortable. I will be persuing nueropathy shoes for diabetic patients. My Insurance co. said to fight it if is not approved. I do see a pediatrist pretty often as I must walk different now and get really bad callusesss and need help getting them removed. My gp said it is good to have my feet checked regularly. Anyway, keep up the fight! I truely hope you get relief! Jean0 -
Hi susanchicoturner said:Hi Susan, welcome aboard! I
Hi Susan, welcome aboard! I took oxy in 2008 - I managed to do all 12 rounds, but I do have perm. nueropathy. I have tried many things, but with no benefit. My hands are much better, still tingly and some arthirtus now in both thumbs, dr. said not doubt brought on by the drugs. My feet are a mix of hot/cold/numb and thawing. The best I would recommend is keep trying what is suggested they may work for you! If not, I am finding the trick is to find shoes that I can work in and be comfortable. I will be persuing nueropathy shoes for diabetic patients. My Insurance co. said to fight it if is not approved. I do see a pediatrist pretty often as I must walk different now and get really bad callusesss and need help getting them removed. My gp said it is good to have my feet checked regularly. Anyway, keep up the fight! I truely hope you get relief! Jean
hello Susan and welcome to the board....I just thought I'd tell you about my first day on oxy....I live up in canada and i think it was about -29 degrees....hubby went out and warmed the car and I was swathed in coats and scarves.....did the dash!
yes the neuropathy is surprising isn't it? At first I thought.....no prob...i can do this but it just got worse. I am out of oxy since June of 09 and to tell truth....neuropathy is pretty good...I can't think of anything that I thought did a lot of good except staying warm
welcome and hugs
maggie0 -
Hi Jean. Thanks for yourchicoturner said:Hi Susan, welcome aboard! I
Hi Susan, welcome aboard! I took oxy in 2008 - I managed to do all 12 rounds, but I do have perm. nueropathy. I have tried many things, but with no benefit. My hands are much better, still tingly and some arthirtus now in both thumbs, dr. said not doubt brought on by the drugs. My feet are a mix of hot/cold/numb and thawing. The best I would recommend is keep trying what is suggested they may work for you! If not, I am finding the trick is to find shoes that I can work in and be comfortable. I will be persuing nueropathy shoes for diabetic patients. My Insurance co. said to fight it if is not approved. I do see a pediatrist pretty often as I must walk different now and get really bad callusesss and need help getting them removed. My gp said it is good to have my feet checked regularly. Anyway, keep up the fight! I truely hope you get relief! Jean
Hi Jean. Thanks for your well wishes. Okay, I will keep keeping on then. And will try everything I can and see what happens.
Susan0 -
Hi Maggie. Okay so I can'tmaglets said:Hi susan
hello Susan and welcome to the board....I just thought I'd tell you about my first day on oxy....I live up in canada and i think it was about -29 degrees....hubby went out and warmed the car and I was swathed in coats and scarves.....did the dash!
yes the neuropathy is surprising isn't it? At first I thought.....no prob...i can do this but it just got worse. I am out of oxy since June of 09 and to tell truth....neuropathy is pretty good...I can't think of anything that I thought did a lot of good except staying warm
welcome and hugs
maggie
Hi Maggie. Okay so I can't even imagine -29. I'm cold and it's 82 in the house right now.
It's encouraging that your neuropathy is pretty good now. From what everyone is reporting, it's a very individual side effect. And it's going to take time and patience... both of which I have.
Susan0 -
SusanSandMb said:Hi!
Lori, you're right. Keeping warm is critical. I can't even tolerate cold water from the tap. I don't know how folks who are living in cold temperatures deal with this. I live in Florida and am spoiled by having it be warm all the time. Lori are you taking a multi vit/min supplement or taking the above nutrients in separate pills? I'm sending you my good luck wishes and positive mojo....
Susan
I am taking my suppliments separately because while on chemo I'm not suppose to be taking folic acid and all the multivitamins I've come across have folic acid in them. Plus, taking separately I have better control over my dosage of each.
The cold weather. I live in Vegas right now and dang it's gotten down in the 20's for a few nights. Seems it's extremes here. Wish I had done chemo during the summer ... but, then I probably wouldn't have been able to have iced drinks or run the air. No air conditioner would have fried my poor dog and anyone else around. At least I can bundle up and turn on the electric blanket to keep my toes warm. But, the air was so cold the other night that once I feel asleep and started breathing through my mouth, I woke up because my throat was cold.... yikes.
Good vibes to you too!0 -
Neuropathy improvingSandMb said:Hi Jean. Thanks for your
Hi Jean. Thanks for your well wishes. Okay, I will keep keeping on then. And will try everything I can and see what happens.
Susan
I had 12 Folfox treatments from September 2009 through April 2010. I was lucky and didn't have a lot of trouble with neuropathy until the last few treatments, when I developed numbness in my hands and feet. Now, about 8 months post Folfox, I've seen a lot of improvement. The numbness in my hands is practically all gone except for just a little bit of numbness in the very tips of my fingers. On my feet, my toes and the pad behind my toes still have some numbness, but it's much better than it was and improving all the time. I'm hoping that the improvement will continue and the residual numbness in hands and feet will completely clear up with time, but even if it stays as it is now, it's so much better than it was and not hard to live with. I didn't do anything special except to keep my hands and feet warm and covered (feet especially) as much as possible.
I hope your neuropathy will improve with time too.
Karen0 -
Neuropathy improvingDaffodil324 said:Neuropathy improving
I had 12 Folfox treatments from September 2009 through April 2010. I was lucky and didn't have a lot of trouble with neuropathy until the last few treatments, when I developed numbness in my hands and feet. Now, about 8 months post Folfox, I've seen a lot of improvement. The numbness in my hands is practically all gone except for just a little bit of numbness in the very tips of my fingers. On my feet, my toes and the pad behind my toes still have some numbness, but it's much better than it was and improving all the time. I'm hoping that the improvement will continue and the residual numbness in hands and feet will completely clear up with time, but even if it stays as it is now, it's so much better than it was and not hard to live with. I didn't do anything special except to keep my hands and feet warm and covered (feet especially) as much as possible.
I hope your neuropathy will improve with time too.
Karen
Hi Karen. Thanks so much for sharing. I am encouraged that you have seen such significant improvement. I am prepared for it to take months, even years if necessary for it to get better, but I do hold out that it will get better with time.
Susan0 -
WelcomeSandMb said:Neuropathy improving
Hi Karen. Thanks so much for sharing. I am encouraged that you have seen such significant improvement. I am prepared for it to take months, even years if necessary for it to get better, but I do hold out that it will get better with time.
Susan
Hi Susan:
I cannot add anything to what everyone else says, just can say all the things they have recommended are the best. I always try to keep warm, the cold (and I live in Florida too) seems to make it worse. I finished 12 rounds of FolFox w/Avastin, no neuropathy and about 6 weeks after finishing, it started.
Some days are better than others, and I find at night my feet are worse than in the daytime for some reason. I used lotion on them all the time because it just makes me feel better overall.
My hands were so bad initially I could not type or write and now about 5 mos later am doing great. I practice really concentrating on the keyboard and rarely make typos now. I also focus on my handwriting, almost as if I am drawing the letters and my handwriting looks almost like it always did.
My way of thinking of this is although I am not thrilled having it, it is a small price to pay to be alive and if it does disappear some day I'll be thrilled, if it doesn't at least I'm here. Take good care and I wish the best for you. Hugs, Joyce 0 -
Neuropathy
My neuropathy started up toward the end of the Folfox about 2 months ago. My doc said it would start getting better about a month after the last treatment..It has not gotten better and is actually worse. He recommended a B Complex which I tried. It seemed to make me jittery and I felt crappy on it, so I am not taking anything right now. He also mentioned acupuncture which I am not going to try....I am quite a needle phobic!
My neuropathy is mostly hands and toes feeling numb and I believe my fingers are swelling some ( or I am gaining weight from being able to eat again!! ) I am still avoiding ice in my drinks, but am able to drink more things that are not warmed up first.
My hands tire easily when typing or trying to even read.
Not sure what to expect this winter as I started Chemo in the spring and finished in early October. I guess time will tell!
Hope everyone is staying warm and feeling good!
Take Care,
Barb0 -
Neuropathy 17 months post chemo
Hi Sandy, I still have neuropathy in my fingers and feet 17 months after the end of chemo. It worsened about 2 months after chemo ended and has only improved a very tiny bit. I do not take any meds and have learned to ignore it. I am careful to always wear shoes tho!0
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