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Did you ever feel this sensation while on FOLFOX ?

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I got an extreme weakness on my legs together with a sensation of cold despite I wear two coats on my legs.Any of you has experimented this kind of sensation due to folfox? I was on folfox 3 years ago but never had this feeling ,( well it was summer then).
Thank you in advance my friends.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

but I do seem to remember having wobbly legs at times. I'd feel like rubber. I hear that you folks are having the type of winter that we usually get. That can make a difference too...

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I agree that things are worst due to the winter ,hope spring arrives soon, last time I was on it it was from June to September ,What a difference!.
Hugs Dr.

Karenhope
Posts: 3
Joined: Feb 2012

Brand new here first post. Scared of chemo but anxious for surgery to heal so we can get the chemo started. Colon cancer went to intestines and body lining.

Karenhope
Posts: 3
Joined: Feb 2012

Brand new here first post. Scared of chemo but anxious for surgery to heal so we can get the chemo started. Colon cancer went to intestines and body lining.

Karenhope
Posts: 3
Joined: Feb 2012

Brand new here first post. Scared of chemo but anxious for surgery to heal so we can get the chemo started. Colon cancer went to intestines and body lining.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

My legs felt like they felt when I had the flu...achy & awkward. One thing that helped me feel warmer was wearing socks when I slept.
Hang in the Pepe~

relaxoutdoors08
Posts: 520
Joined: May 2011

Pepe,
Yes, following treatment 5 I could not feel my feet and had weakness in both legs and pain behind the right knee. By day 5 it passed. But I still have some of these same feelings but not as severe now that I am soon 1 year post Folfox.
Thinking of you and wishing you the best.
NB

jules286
Posts: 5
Joined: Feb 2012

HI,

am new but I was in folfox last year and I did have a cold despite. Its normal as per my understanding.

Blessings

Julie

janie1
Posts: 753
Joined: Apr 2011

Had weakness in legs too. It will be better in the Spring!!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

You have been very helpful !

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

darling pepe.....I used to hold onto the stair railing and creep downstairs one step at a time....one foot on stair then bring next foot down beside it.....very shakey.....very weak legs

but of course darling boy it was 40 below.....haha just another Canuck joke.....

yes the cold makes it worse for sure.....

have a nice warm hug.....

pepe I am going to Florida this week!!!!! for one week

good-bye winter.....

mags

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I'm jelous as we are having a Canuck Winter in the whole Med! Crazy! Don't know if you know about Majorca or Ibiza islands but there are buckets of snow even there! hehehehe! .
Not so fun here , not been snowing here more than some flakes weekly but we have been the whole month in a range of -4 to 2 in the mid morning which is not fun to me . In the center of Spain temperatures of - 10 to - 18 have been common the whole February , but they are more used to it.
So I rather to be a Canuck in Florida! eh?.
Take care and keep in contact with us ma cherie.

seek@light
Posts: 26
Joined: Dec 2011

My mom just finished her sixth cycle of FOLFOX and she has to wear gloves and very thick socks due to sensation to cold, even though she is living in a city similar to FL in the US.

Her onc told her that is normal as well.

taraHK
Posts: 1961
Joined: Aug 2003

I had constantly cold hands and feet. But not generally (ie need two coats). But I live in warm climate

Tara

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

weakness on my legs and some times my arms, has it anything to do with cold?.
BtW Tara how are you any news?.
Hug to all of you.

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

dear pepe,

never had the weakness, my guess the weakness in the legs could be a general feeling of weakness, just that your legs muscles are the biggest muscles in the body, so you may notice the weakness more in your legs.

it might be time to do a few things to take the edge off folfox's nasty side effects, pm me if your interested. almost everything i have tried has been published here anyway. i would start with gut rebuild and a good probiotic and a a little gentle juicing maybe.
i never had the weakness, just number feet and hands and fingers. which has almost all gone.

hugs,
pete

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hehehehehe.
Hugs!

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

After I had been off chemo for a month I remember walking down the hill to my uncles place and wondering if my legs would support me. I felt like at any moment I might have my legs go out from under me, I thought I might collapse, it never happened thankfully. I eventually got my strength back, but it took a while.

But I was wondering if after chemo any of you ever felt a sensation on your feet as if you had stepped in water and your sock was wet, but when you reached down to touch your sock it was bone dry. Its so weird sometimes with the neuropathey and I stopped chemo in 2009.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I had those troubles on FoLFOX (I was on it from October to April - so I had it through the winter). My feet and legs were always cold, and they got quite weak. I remember having trouble getting up and down the stairs. Sometimes they'd seem ok, and then just stop working. I think much of it was neuropathy from the oxaliplatin that caused this. When added to the fatigue, it made getting around very hard some days.

How are you holding up on the FOLFOX other than this issue with your legs?

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

Hi

While on ox Platin did your doc not give u any supplements like b12, calcium FoRte etc.

I am taking r alpha lipid acid and also l glutamine to counter the effects of cold sensitivity and neuropathy.

I read up on this on the discussion boards of one of the cancer help sites.

I hope it helps. I have just been on the third cycle of folfox and I started to get cold sensitivity and tingling from the first cycle
Itself.

Sdp

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

at the hospital pharmacy which is on trials in several countries for neuropathy and it helps a lot .

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

infusion and some rush also couple of days!

Erinb
Posts: 295
Joined: Apr 2010

My husband was on it for twelve treatments when he was first diagnosed in March of 09. He tried it again and on his 3 treatment (15th altogether) and he had difficulty breathing and broke out. Doctor said it was an allergic reaction and he can't have it again. He also used to get something like restless leg syndrome while on it. He had the tendecy to kick when he would relax, but that symptom went away when he stopped Oxaliplatin and didn't get nuelasta anymore.

kmygil
Posts: 881
Joined: Feb 2007

I was wobbly for a while, even after ending treatment, but eventually I got my land legs back. Just be careful about falls, since balance also seems to be affected sometimes. Stay as warm as possible; the cold can really do a number on you. Sometimes it's one moment at a time and each one is a triumph!!!
Hugs,
Kirsten

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I'm careful when I get up and walk around after an infusion. My first trip is always to the bathroom. It may help to do Balance exercises - these are a good idea for older folks anyways.

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

My sensation was tingly and prickly. It got intensified with touch or movement. If I bent my neck or moved it in any direction it felt like a bolt of electricity shooting through my legs and out my feet. I was very unsteady and wobbly and stumbled a lot. I would tip just standing, didn't have to be walking.

I hope it goes away for you!

Huggin ya, gail

pefum
Posts: 1
Joined: Apr 2018

Feelings are very important in the life and when someone is suffering from such disease he know the meaning of such feeling. If you like to read such stories you can learn from college paper blogs that how we can live a long life with good health.

Trubrit's picture
Trubrit
Posts: 5457
Joined: Jan 2013

Don't know what you will find. 

I have reported it to CSN mods. 

But it gave me warm feeling to see Pepe's picture and hear his words. One of the many that have passed and is missed. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6709
Joined: Feb 2009

Saw so many of the people that were such good contributors and now have gone.  How very sad.  Good ole Pepe he always commented to me how every Thanksgiving my turkey was 23 lbs or bigger and said he'd never be able to fit that in his oven, made me laugh.

Kim

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