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Neuropathy question

kyolcu
Posts: 112
Joined: Jun 2017

Hello Friends,

I am off chemo(Oxaliplati) for about 2 months and still have numbness under my feet and hands. I am currently not taking chemo. I appreciate if anyone had same experience and share with me. Is it normal to have numbness after 2 months or takes longer to get rid of. Thanks for responses.

Thanks

Kadir

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

I was only on oxaliplatin for 8 rounds of chemo. I had neuropathy during the time of treatment and for a couple months after but it got to be less and less and then I didn't have it any more.    

I've heard of some people who have neuropathy for several months that gradually goes away.  Some have had it for over a year.  Those who had it for longer periods of time have more problems with neuropathy and some say it can be permanent.  Usually if you;re on it for 12 treatments or less, then it goes away over time. 

You'll probably hear from others on the site soon that can share their experiences.

Joan  

kyolcu
Posts: 112
Joined: Jun 2017

Thank you, Joan

I checked my records that it shows 7 rounds of Oxaliplatin I received until January 17. So, I hope neuropathy will disappear soon. 

Thanks

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Hi, I had it from six rounds I think it was. It lasted for months but eventually went away everywhere but the bottoms of my feet. Most of the time I don't even notice but it's been 4 years so I've become used to it. If I focus on it it's definitely still there.

Good luck!

Jan

Tunadog's picture
Tunadog
Posts: 232
Joined: Mar 2017

I had the full course- reduced to 80% last two treatments - that’s more than 2 years ago.

hands 90% resolved

legs below the knee 75% resolved 

No pain just mostly lack of feeling. I’m not driving.

Your mileage may vary 

Good Luck 

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

I was also on the Oxaliplatin and here I am, over five years out, and I still have neuropathy in my legs, feet and hands. The hands aren't so bad, but the legs and feet are.  

For some lucky Ducks, the neuropathy goes away. For others, like myself, we learn to live with it.  Unfortunately, we can't tell you which side you will fall on.  Fingers crossed for the Ducky. 

Tru

kyolcu
Posts: 112
Joined: Jun 2017

Thank you so much all for good inputs and comments. I really appreciated that we all are in here sharing issues each other.

Thanks

Kadir

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

It's common for it to last for awhile after treatment ends.  If it continues let your oncologist know.  They should be aware that it is still bothering you.

Kim

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

I surely hope its not permanent. 

abita's picture
abita
Posts: 609
Joined: Dec 2017

I didn't get neuropathy until recently.  My oncologist said that how long it lasts correlates to how soon you got it. For what that is worth. He my have just answered my question like that because he was afraid I would stop chemo early. Thos was when he told me 4 more and I said I would until get neuropathy then would reevaluate 

kyolcu
Posts: 112
Joined: Jun 2017

Thank you all for good comments and shared experience. I hope mine will not be permanent. 

Thanks

Kadir

Djspareme's picture
Djspareme
Posts: 18
Joined: Mar 2019

I had 12 treatments with oxiliplatin.  The neuropathy started after 10.  I then had 12  treatments with irinitecan that wasn't supposed to cause neuropathy.  Im now on Xeloda.  The neuropathy is in my hands from the wrist bones to the fingertips and in my legs from the knees to the tips of my toes.  Thankfully just numbness not the points and needles.  Short walks and WARM water soaks help.  I've been told it's probably permanent as it's been 18 months now 

Trubrit's picture
Trubrit
Posts: 4832
Joined: Jan 2013

I do so hope that your neuropathy goes away.  I was told to wait a year, so maybe there is still time. 

Look forward to seeing you post more.

Tru

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

I did the full twelve of Folfox and alot of it went away by a few months out, but some finger and foot stuff lasted 18 months or so, it can take time...............................................Dave

Djspareme's picture
Djspareme
Posts: 18
Joined: Mar 2019

Golf season is about to start here.  I can at least hold the club.  Can't feel it but can see the "pressure" points on my fingers so I know how hard im holding it.

 

SophDan2's picture
SophDan2
Posts: 134
Joined: Jul 2017

I had 12 treatments with the oxi cut to 80% for numbers 10 and 11 and stopped for 12. Here I am 1 year and 4 months since my last treatment and I still feel the neuropathy in my feet and ever so slightly in finger tips. It is really not that bad and it is tolerable. If that is the price that I had to pay to stay clean, which I am at this time, then I'll pay the toll.

Nazareth
Posts: 87
Joined: Nov 2017

oxaliplatin 8 rounds a year ago or so- couldn't tolerate more- got neuropathy in feet and finger tips- still have it- feet feel like they have bunches in hte pads, feels very awkward- uncomfortable, even painful at times- however, I was gettign needle-like stabbing feelings in my feet before I learned i had cancer- so i thin kthe neuropathy was beginning then- felt like 100's of tiny needles jabbign my feet- not constantly, but off and on through the weeks- I think the oxaliplatin just made it worse- now toes are numb, pads of feet feel swollen (they aren't- just feel that way), are painful- fingertips improved some- but not totally- Butl ike Dan abov says- I'll take it over havign cancer anyday-

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

Hi Kadir,

i have completed my chemo since February 2018. I was on Oxaliplatin (via IV drip) and xeloda For 6 months with total of 8 treatments. Neuropathy started in my fingers and toes during my 5th treatment. My fingers were tolerable. Only when I tapped them on hard surface I would feel the pins and needles. My toes and top part of my feet felt the pins and needles all the time. It was uncomfortable wearing shoes and boots. I found wearing airy light shoes like sketchers was comfortable for me. It's been a year and one month since my completion of chemo, my fingers are back to normal. i now just have ever slightly numbness on the tip of my toes. i can wear shoes and boots again! Although it will take time, but neuropathy is definitely improving in my case and I hope it will for you as well. 

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