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Neurapathy after chemo

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I have been done with chemo for almost 4 months now and have terrible neurapathy in my feet.  I had read that the neurapathy can start after chemo since I never had it during my sessions.  I'm on Lyrica twice a day but it doesn't seem to be helping at all.  If anyone is on some sort of meds, can you tell me the name and if it worked for you or just made it a little less irritating.  I hate that I walk around like an old lady and can't even do the treadmill anymore.  Thanks you all!

 

Cynthia

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

Hi Cynthia ~  The chemo-induced neuropathy can be so painful.  The only medication my husband tried was Neurontin but he eventually stopped taking it because he was unsure if it was helpful.  He did do three things that brought him some relief: massage, warm wax, and physical therapy.  

He went to a massage therapist offered at our cancer center, but any masseuse could provide a good, even thirty minute, massage to the extremities, feet, calves, and perhaps hands.  The increased blood flow to these areas helped him.

Also, the masseuse suggested he get one of these devices that melts paraffin wax and then you immerse your feet in it.  At first, I thought this was an awful suggestion because I feared the warm wax would irritate his skin - but, he loved it and found it very soothing.

And last, his primary care doctor recommended he work with a physical therapist to help improve his balance because neuropathy can cause one to stumble and even fall.  This is a service that can often be covered by insurance when referred by primary care.

He also found taking Ativan lowered his response to the pain and stress. He tried acupuncture, but did not feel this helped him.

Best of luck to you from one of the other Cynthias.

janderson1964
Posts: 2215
Joined: Oct 2011

I still have neuaropathy in my feet over 7 years after I finished FOLOFOX. I never took any meds. I just live with it.

Lorikat's picture
Lorikat
Posts: 682
Joined: Jul 2011

Please explain what nueropathy feels like to yall.  My feet burn like fire, hurt sometimes and now my ankles are....help pls

 

janderson1964
Posts: 2215
Joined: Oct 2011

It feels like pins and needles. But just on the bottom of my feet.

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I was on Folfox too and yes, it feels like pins and needles. 

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

I am over six months out from FOLFOX and the neuropathy in my feet and hands has not improved one iota. 

My neuropathy is not painful, which is a great blessing, but the numbness in my hands does restricts activities, and I drop things on a regular basis.

I have also got cronic bilateral carpal tunnel now, which I didn't have before. Even typing this post, I have to take breaks to rub the burning pain from my hands and arms. I do wear wrist braces.

Topping that off, I have cronic joint pain. For a while it was all joints, but just lately only in my arms and hands, very bad in my finger joints. 

The neuropathy in my feet is definitely worse, feeling like they are filled with cement; hard to move. When I wiggle my toes I can't feel them at all. The numbness extends up my calf.  I don't get the pins and needles feeling any more, just can't feel anything. And yes, it does affect my balance.

I don't take any medication because I don't experience pain. 

I have one of those wax things for hands and feet and will dust it off and start using it. Thank you for letting us now that that helps, Devotion.

I have had a pedicure which made my feet feel lovely, so I can see how a regular massage would help but sadly I can't afford to do that on a regular basis.

I can't even imagine it going away now, but of course I hope it does. 

 

 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Sue,

Hopefully your joint pain will go away with time.  I can feel my toes but it's that feeling like when your foot is asleep.  I'm not in pain which is good but I walk very slow now. 

Anonymous user (not verified)

I was only on FOLFOX for 3 months because it just didn't work for me.  I feel lucky we got off so soon because the numbness and tingling on the soles of my feet and the numbness in my finger tips was getting worse with each cycle infusion.  Within a month of stopping the Oxaliplatin my hands and fingers went back to normal.  But now 9 months later I still have the N/T on the soles of my feet although it is not quite as bad as before.  One of my infusion nurses told me to start taking Vit B50 and B12 because it had helped other people.  I tried it for a while and may have had improvement, but I have a hard enough time to remember to take my daily Prilosec.  Is it chemo brain, Alzheimer's, or Sometimer's (sometimes I remember and sometimes I don't).

Dan

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Dan,

I heard about the vitamin B and have been taking B12 now.  Thank goodness they come in gummy bites.  I hate swallowing pills!  I definitely have Sometimer's disease.  That's going to be my new excuse word at work! haha

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

A lot of times it gets much worse before it starts to get better.  Just the feeling of the sheets on my feet would send me into a frenzy.  It's been 4 1/2 years for me and I'm still on medication.  It has gotten better but never went away and talking to my oncologist last month she thinks it's now permanent.  The cold weather makes mine worse and now that it is getting colder outside I'm taking more medication than during the summer months.   I'm on gabapentine 900 mg a day, although I'm not taking that much during colder weather I'm doing about 400 mg or 500 mg.

Kim

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Kim,

You just reminded me about the cold weather.  It hasn't been that cold here yet but I dread it.  I did buy some Skechers shoes that look like slippers (the fuzzy stuff inside) so I'll wear those to work all the time during the winter.  One of my co-workers is on Gabapentine and I'm going to call my onc office to see about trying that one.  Lyrica just isn't doing it.  I read somewhere that if you still have the symptoms after 2 years, then you're stuck with it forever.  Frown

marbleotis's picture
marbleotis
Posts: 715
Joined: Mar 2012

Mine started at about treatment #5.  I completed 12 treatments a year ago in August.

I had neuropathy in my hands, feet, tongue, teeth and lips.  Yup! 

Now after all this time it remains in my hands and feet, but it is much improved.  For my hands I did my embroidery like a maniac.  This kept the hands moving and I believed really helped.

The feet are tricker.  I exercised in a wellness program after disconnect and have continued this program at the gym (very important).

For my footwear I can only wear Clarks shoes.  They are cute and comfortable.  Regular shoes will not be a good choice now.  Make the investment in good shoes/sneakers.

I will lose my balance if not careful, but again it is much improved. 

I see steady, slow improvements and that is good enough for me.  I may not get back to 100% but being NED is more improtant.

Stay patient, but active - it gets better

Also no medication for me - I do not believe in that and honestly never saw it work for anyone.  Taking chemo was enough chemicals for me.

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I had to go up a half size bigger on my shoes and get wide shoes now.  Privo's (by Clarks) and Skechers are all I wear now.  I definitely won't be making fashion statements but comfort is more important now.  And you're right.  I'd rather have this annoying pain than have cancer.  Before my cancer, I did the treadmill at least 5 times a day for 45 minutes.  Now I can only do it for about 20 minutes before it starts hurting.  That's the biggest part is I've gained weight and can't get it off since I can't do the treadmill as much.  Hopefully with time it will get better but I have to be thankful for my health now.  My husband said he'll love me as long as I fit in the bed of his truck! 

KFalvey
Posts: 118
Joined: Mar 2005

Hi Cynthia,

     My neuropathy got much worse 3 months after finishing Folfox 4. Someone on this board told me to try Alpha Lipoic Acid capsules (I got 300 mg capsules at Walmart and took them twice a day) and also L-Glutamine powder (Walmart doesn't carry it anymore; check vitamin stores) I put 2 tablespoons in a cup of yogurt twice a day. I could feel a difference within a few days and almost all the worst symptoms disappeared within 6 months. These supplements help rebuild the protective cover over the nerves that Oxaliplatin stripped off to cause the neuropathy. I continued using these for 2 years, but I still have tingling and slight numbness on the bottoms of my feet. When it gets cold out, I feel like I have really tight socks on my feet even when I don't have any on. Before trying these supplement, I was numb up past the knees on both legs and both hands had problems buttoning shirts and pants and I couldn't put on earrings or jewelry. Now my hands are fine.  My oncologist told me to take Vitamin B6 also.  I hope this works as well for you as it did me. Take care.

Kandy, whose been clean for almost 6 years.

pog451
Posts: 20
Joined: Aug 2012

My neuropathy started in the break between FOLFOX round 3 and my liver resection and got worse after FOLFOx round 6 (my last one). I had numbness in my fingers up to the first joint and my feet were also totally numb and felt cold (internal sensation, not to the touch).

A neurologist friend sent me some lipoic acid too and my oncologist originally gave me high-dose vitamin B tablets. Although I cant say either had a "wow" effect 4 months out my hands are now pretty much back to normal and my feet significantly improved. What really helped my feet was digging them into sand and forcefully wiggling and moving my toes on the beach on holiday. i also have a "foot spa" with warmed water and a bubble "massage" that is very nice and really helps with the cold feeling.

pog451
Posts: 20
Joined: Aug 2012

My neuropathy started in the break between FOLFOX round 3 and my liver resection and got worse after FOLFOx round 6 (my last one). I had numbness in my fingers up to the first joint and my feet were also totally numb and felt cold (internal sensation, not to the touch).

A neurologist friend sent me some lipoic acid too and my oncologist originally gave me high-dose vitamin B tablets. Although I cant say either had a "wow" effect 4 months out my hands are now pretty much back to normal and my feet significantly improved. What really helped my feet was digging them into sand and forcefully wiggling and moving my toes on the beach on holiday. i also have a "foot spa" with warmed water and a bubble "massage" that is very nice and really helps with the cold feeling.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

It's been 4 years since I've had any oxyaliplatin (26 rounds in total) and while my hands are fine, my feet still have issues with stiffness and tingling almost like there is something over my skin.  A year ago I thought it was getting better, but it was summertime and warmer and my symptoms were less.  With the cold comes an increase in symptoms.  I found someone who did 1 hr. foot massages for $25 and told her to go to work on my feet.  I went once a week for several months and that's when I really saw improvement in my symptoms.  I tried getting a prescription for the tingling pain in the beginning but after reading the side effects returned it to the pharmacy!

Even just rubbing lotion into your hands and feet helps to stimulate blood flow, but for me, the massage was the best money I spent.  I still go periodically, but not as often.  I do want to try the parrafin wax as I love the feel of that on my hands and it will help with keeping my skin soft while taking Xeloda.  Good luck to you, Traci

P.S. I too have taken to wearing comfortable shoes, for the most part, and like driving shoes with the nubs on the bottom rather than soles as it seems to stimulate my feet some.  I seldom wear heels anymore.  I am vain enough that I went ahead and bought some heeled boots and wear them often even though I tend to clomp around in them, they make me feel prettier than tennis shoes!

Trubrit's picture
Trubrit
Posts: 5486
Joined: Jan 2013

Winter has arrived here in the desert (we have had snow already) and I am already experiencing more stiffness in my feet, though I didn't think that was possible. 

I'm going to have to look for some good boots with wool inside. 

I hadn't heard until reading this thread that the cold would aggrivate the neuropathy.  Blast!

I think I will also look into foot massage. I just cancelled my iPhone account, so maybe the money saved on that can pay for a massage every few weeks. 

I really do appreciate everyones input here, not only has it helped me know I'm not alone with this darned numbness, but some ways I can at least help it be bearable. 

meh_oregon's picture
meh_oregon
Posts: 4
Joined: Nov 2013

 

Hello,

 

I first started having neuropathy in my feet after a couple of months being treated with 5FU. After another month, my hands were affected. My doctor warned me about the possibility and then advised me that it could be temporary. Once treatment has ended, it could take up to a year before we know if it was permanent. Well, I am still undergoing chemo (a few other different versions) after 2½ years.  I still have neuropathy, but it is not as bad as when I first had it. I have the constant tingling feeling (like when your foot is asleep and you try waking it up) that sometimes can become more irritable. The doc and I have come to the conclusion that the stage that I have is permanent, but there are things I can do to make sure it doesn’t get worse. I have found help through other alternatives and avoid adding another drug into my system. From discussions with other patients, the drugs typically help those with severe, extreme versions of neuropathy. Also remember that idle feet and hands tend to encourage the neuropathy. Activity is the most helpful in combating neuropathy.

 

For my hands I crochet daily, massage my hands a minimum of twice a day (this also helps putting moisture back into your skin since I use a lotion), typing, and other activities that require the use of my hands. I have to admit it is frustrating that I use to type 80 wpm and now only type 35 wpm. But when the neuropathy was the worst, I wasn’t even able to get 20 wpm.

 

For my feet, I massage myself with lotions twice a day. If someone else is willing to do it, take them up on it. Relaxing is a great way to enjoy this treat. Once a month I have a spa pedicure done (I typically do this with a friend or relative to have a great social event). Even though your feet may only be experiencing the neuropathy, it is important to massage up to the knee to help the blood circulation. Also, keeping your toe nails clean and short prevents other infections developing that may go unnoticed. I also had to change my shoes by going up half a size and getting wider widths. Avoid the pointy shoes since it cuts down the circulation. Elevating your feet is important to cut down on possible swelling and help circulation.

 

I have troubles walking since I am not always sure where my feet are or if I am on level ground. I tend to walk slower now along with looking down to verify my feet are doing what I think they should be doing. The same is true with my hands. I can’t always tell if I have touched something that has burned my skin. Hence, I tend to be a little more cautious with my hands and feet.

I hope this helps you and others. Nothing ever happens over night, but give yourself some patience and time to improve.

Mary

 

schnauzerheads's picture
schnauzerheads
Posts: 53
Joined: Jan 2011

Congrats on getting through the chemo!  I'm on close to 3 yrs of numb feet and tingly fingers.  My feet feel like cotton balls, that's as close as I can get to a description.  Really lame, but considering the alternative, I'm ok with that.  I've tried a few different natural remedies, but honestly, nothing really worked.  I'm avoiding more prescriptions because it seems like the side effects of some of this stuff are worse than the symptoms and I'm tired of putting more crap into my body.  I haven't heard of much of it actually being effective.  I totally get your frustration, it drives me crazy if I think about it.  All I can suggest is eating healthy foods (organic when possible),  foot massages and exercise. My symptoms have lessened to a certain degree, but still there.   I was really upset about some of the after effects of surgery and chemo, but found that the less I worried about it the better my life became.  If you come up with a solution I'd love to hear it, and wish you all the best in your journey.

 

Kevin

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Hi Cynthia, I am 15 years post chemo. I have been to a neurologist. He has done nerve tests and I have severe motrsensori peripheral neuropathy in both legs and left hand. His assessment Ï don't know what caused it and I cannot help you". Beware of lyrica and Neurontin. These drugs were developed for epilepsy. If you stop them suddenly you can suffer siezures. You have to come off them carefully. Doctors should not be prescribeing them without fully explaining the risks and the weaning regime. take care Ron.

DD3's picture
DD3
Posts: 134
Joined: May 2013

My wife just completed FulFox 30 days ago.  During the treatment it was mild.  When we finished up... Oh boy.  Her hands and feets.  Sounds like she is walking with 20pds extra in each foot.  Her hands bother her and she is prone to drop items.  She is just started taking gabenpentine (sp?) and B6 and L glutomine.  Yah, I mispelled all those, I'm sure.  Will report back with results.  Like she says "if this is the worse that comes out of this, it's all good."  On a side note.  She is back to walking 2 miles a day and doing everyday chores.  So, while its there...  She has adjusted to life with it. 

dorookie
Posts: 1736
Joined: Jul 2007

Hi Cynthia

 

im five yrs out and have it in mt feet bad, it's a daily struggle, good support shoes help. I also got a note from my doctor that allows me to wear tennis shoes at work.  lyrica didnt work but gabapentin same as nurotingabapentin I think, worke d after finding the right does, it def took a higher dose to make a difference.  Lyrica also caused weight gain which most women don't like lol

 

hope you feel better soon

 

hugs

Beth

TxKayaker's picture
TxKayaker
Posts: 177
Joined: Jun 2009

Next April will be my fifth year and I still have foot problems (the bottoms of my feet) but these vary from day to day....

Deena11
Posts: 199
Joined: Nov 2012

It has been a year and three months since I completed chemo.   Thankfully, I don't have pain but I definitely still have numbness in my feet and fingers.  I think my fingers have gotten slightly better but my feet ar still numb.  It feels like I am waliking in sandbags.  My Oncologist said they may improve over time and I hope that is the truth.  I'm so thankful I don't have pain though.

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