Neuropathy?

Ugur
Ugur Member Posts: 62

Hi everyone, 

My hands and feet started to ache out of blue. 
I have redness where are painful on my palm. 

What do you think? Is this how neuropathy starts? 
If so, how can I prevent it from worsening?

Thanks in advance for your help,
Uğur 

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    I'm sorry, I forget which

    I'm sorry, I forget which chemo you're on. If it's Folfox then you'll likely get neuropathy but I didn't have any redness or aching, just a very strong reaction to cold or even cool things that I touched. When I touched something cold I'd get a shock almost like a static shock from dragging my feet on the rug. And now that it's stayed in my feet it's like having a rather tight sock around my feet from just behind my toes to my ankle. Most days I don't even notice it, to be honest. 

    So I'm not sure what you have is neuropathy. The chemo I go on now does cause rashes and reddened skin and discomfort. That's Panitumumab. I use moisturizing cream to eal with that.

    Jan

  • Ugur
    Ugur Member Posts: 62
    JanJan63 said:

    I'm sorry, I forget which

    I'm sorry, I forget which chemo you're on. If it's Folfox then you'll likely get neuropathy but I didn't have any redness or aching, just a very strong reaction to cold or even cool things that I touched. When I touched something cold I'd get a shock almost like a static shock from dragging my feet on the rug. And now that it's stayed in my feet it's like having a rather tight sock around my feet from just behind my toes to my ankle. Most days I don't even notice it, to be honest. 

    So I'm not sure what you have is neuropathy. The chemo I go on now does cause rashes and reddened skin and discomfort. That's Panitumumab. I use moisturizing cream to eal with that.

    Jan

    Hi Jan

    I am on Folfox. I just went to touch something cold and I had no shock. However,  as you said I have red skin on my palm and it is uncomfortable. Maybe I should also use something. It looks like I had banged my hand on something.

    Thank you for your reply 

  • Tunadog
    Tunadog Member Posts: 235 Member
    Not sure..

    I have Peripheral Neuropathy, but I didn’t notice it much until 4 months in. I’ve never had any pain.

    It’s probably from the Oxaliplatin, I would let my Oncologist know right away.

    I didn’t but others have had severe reactions.

    BTW: I still have lingering Neuropathy 18 months out.

    Good Luck 

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    Here is a picture of my hands when the neuropathy was at its worst.  

    I would strongly suggest you talk to your Oncologist or one at least the surgeon. It may just be a reaction to your surgery, or medications. It may be the start of neuropathy. Better get it looked at. 

    image   Tru

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    edited May 2018 #6

    image

    My redness and pain was in the palms of my hands like Tru's but also on my feet. It was caused by the oxalyplatin. I cannot remember the  exact one but we found a non-greasy lotion at Walgreens (their brand) that worked really well. It was so painful that it felt like burning. My onc told me that was part of my neuropathy and lowered my dose some to help but it didn't seem to help much. If this is part of neuropathy and not a reaction, you can get some "Nature Made" (Walmart brand) Vitamin B complex. Make sure you take pictures and talk to your doctor. 

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Oxy

    It's the oxy probably.  My problems started the first infusion where when drinking anything cool or cold it felt like shardes of glass in my throat.  Eventually during 3 and 4 treatment the symptoms in hands and feet (numbing and burning) didn't go away so easy.  At treatment 5 it bothered me so much and when I'd mention to my doctor she told me it was a "nuisance" and she wanted to continued without reducing it.  So we did.  Today I've got permanent neuropathy and if my medication is skipped, I'm crawling the walls, my hands, feet and body are going crazy and I'm not able to do anything.  It's awful.  Don't let it continue without discussing this with your doctor.  It might not be the oxy for you, but it was for me.  Make sure you are your best advocate and speak up and make your voice heard.  Hope you feel better soon.

    Kim

  • Ugur
    Ugur Member Posts: 62
    edited May 2018 #8
    Tunadog said:

    Not sure..

    I have Peripheral Neuropathy, but I didn’t notice it much until 4 months in. I’ve never had any pain.

    It’s probably from the Oxaliplatin, I would let my Oncologist know right away.

    I didn’t but others have had severe reactions.

    BTW: I still have lingering Neuropathy 18 months out.

    Good Luck 

    Thanks Tuna

    I'll definitely talk to my surgery doctors and to my onc at first opportunity. 
    Thanks!

  • Ugur
    Ugur Member Posts: 62
    Trubrit said:

    Here is a picture of my hands when the neuropathy was at its worst.  

    I would strongly suggest you talk to your Oncologist or one at least the surgeon. It may just be a reaction to your surgery, or medications. It may be the start of neuropathy. Better get it looked at. 

    image   Tru

    Hi Tru

    I'll talk to my doctors for sure.

    I don't have any sensitivity for cold or something, it just feels like aching when you slap your hand hard and my feet have some burning feeling.

    But my hands look like yours as well from what I could see. Thank you very much for the pic.

    Will update here soon, 
    Ugur

  • Ugur
    Ugur Member Posts: 62

    image

    My redness and pain was in the palms of my hands like Tru's but also on my feet. It was caused by the oxalyplatin. I cannot remember the  exact one but we found a non-greasy lotion at Walgreens (their brand) that worked really well. It was so painful that it felt like burning. My onc told me that was part of my neuropathy and lowered my dose some to help but it didn't seem to help much. If this is part of neuropathy and not a reaction, you can get some "Nature Made" (Walmart brand) Vitamin B complex. Make sure you take pictures and talk to your doctor. 

     

    It's very similar

    I have same feelings and my feet look like yours as well.

    We will see what the doctors are gonna say.

    Thank you very much for the tips and the pic.

    I really appreciate, 
    Ugur

  • Ugur
    Ugur Member Posts: 62

    Oxy

    It's the oxy probably.  My problems started the first infusion where when drinking anything cool or cold it felt like shardes of glass in my throat.  Eventually during 3 and 4 treatment the symptoms in hands and feet (numbing and burning) didn't go away so easy.  At treatment 5 it bothered me so much and when I'd mention to my doctor she told me it was a "nuisance" and she wanted to continued without reducing it.  So we did.  Today I've got permanent neuropathy and if my medication is skipped, I'm crawling the walls, my hands, feet and body are going crazy and I'm not able to do anything.  It's awful.  Don't let it continue without discussing this with your doctor.  It might not be the oxy for you, but it was for me.  Make sure you are your best advocate and speak up and make your voice heard.  Hope you feel better soon.

    Kim

    Hi Kim

    So sorry to hear your experience. Arrogant doctors just don't listen to the patients.

    I have tried couple of times, and I can tell that I don't have sensitivity for cold. It's just aching and having some kind of burning sensation. 
    I'll talk to my doctors, and see what will they think about the situation.

    Thank you very much for your message, I hope one day you won't need any medication, 
    Ugur

  • Mikenh
    Mikenh Member Posts: 777
    It could be the 5FU/Xeloda

    It could be the 5FU/Xeloda too. I have arthritis-feelings with Xeloda and Neuropathy with the Oxaliplatin. It took a while to tell the difference but the Neuropathy decreases after the infusion while the Hands and Feet (the arthritis feeling) increases with Xeloda. The Neuropathy is generally tingling which can get to the level of painful. I do find that exercise helps. For me, the Hands and Feet are worst when I wake up.

  • abita
    abita Member Posts: 1,152 Member
    Mikenh said:

    It could be the 5FU/Xeloda

    It could be the 5FU/Xeloda too. I have arthritis-feelings with Xeloda and Neuropathy with the Oxaliplatin. It took a while to tell the difference but the Neuropathy decreases after the infusion while the Hands and Feet (the arthritis feeling) increases with Xeloda. The Neuropathy is generally tingling which can get to the level of painful. I do find that exercise helps. For me, the Hands and Feet are worst when I wake up.

    Oh, this makes me wonder if

    Oh, this makes me wonder if the 5fu is why I have been feeling pain in my knees. 

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Ugur said:

    Hi Tru

    I'll talk to my doctors for sure.

    I don't have any sensitivity for cold or something, it just feels like aching when you slap your hand hard and my feet have some burning feeling.

    But my hands look like yours as well from what I could see. Thank you very much for the pic.

    Will update here soon, 
    Ugur

    Huge

    The fist picture I posted was allot bigger, and I was a bit embarrased. Then it came out tiny. 

    So, here is the original.  My hands (and feet) were acrually purple. I had already stopped the Oxaliplating about two months before this happened. I have my ideas on why it got like this overnight. My Oncologist doesn't agree, but my gut does and I'm sticking to it. 

    Anyway, even though my hands are not this colour any more, I lost strenght in my hands, and have little feeling in the fingertips. I have neuropathy from the knees down, though it is not painful - thank goodness. 

    See, I shaved my head also, as I looked like Gollum (Lord of the Rings). 

    image