Did you ever feel this sensation while on FOLFOX ?

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Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member

    Yes
    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?

    Some mouth sores 2 or 3 days normally day 6 and 7 after
    infusion and some rush also couple of days!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    sdp said:

    nephropathy
    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

    Not sdp but they have prepared to me a baclofen gel
    at the hospital pharmacy which is on trials in several countries for neuropathy and it helps a lot .
  • Erinb
    Erinb Member Posts: 293
    My husband was on it for
    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
    kmygil Member Posts: 876 Member
    Oh yes!
    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
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    My sensation was tingly and
    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
    pefum Member Posts: 1
    Feelings are very important

    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
    Trubrit Member Posts: 5,796 Member
    pefum said:

    Feelings are very important

    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.

    Best NOT click on the link

    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
    Annabelle41415 Member Posts: 6,742 Member
    Awwwww

    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

  • Mikenh
    Mikenh Member Posts: 777
    kmygil said:

    Oh yes!
    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

    I'm careful when I get up and

    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.