neuropathy in legs after 3rd treatment

tastykake

Hi,This is my first post & it is the day after treatment. I am on Folfox & the first 2 days I am very shakey. My question is concerning what happened to me immediately when I got home from the hospital. I was ok after my 4 hours there & a 1 hour drive home but when I tried to go up the steps in our house I couldn't walk. It was like my legs didn't know what to do from the knees down. I lifted them & my husband was directly behind me,thank goodness because by the time I got to the top I fell. He caught me & pushed me to the landing. I never had this happen before. I am given calcium & magnesium at treatment. I knew about neuropathy in the feet but could this be what was happening in my legs?? Thank you all for being here. This board has been a big help in answering questions for me.

lcarper2

tastykake
Yes it is the treatment you are taking they say it may go away after treatment but it may not I have almost lost my legs totaly I walk with a cane and my husbands arm most of the time I do fall but never hurt myself. You can ask your doctor and they may be able to reduce the one causing this. I am ok with my legs because I am still alive and don't work outside the home but if you do it can be a problem good luck and I will be praying for you.

Louann

Jaylo969

Hi Tastykake
Yes, I believe you probably have neuropathy. I am on Folfox also and it was after my 3rd treatment that my legs from knees down and feet starting getting real bad. I couldn't feel the floor under my feet. I had to have my dosage lowered for my fourth treatment and that worked out well, or so I thought until yesterday. The neuropathy is back as bad as before and now my left hand is numb.I am due my 6th treatment on Tuesday.

Be sure and tell your doctor about this and anything else that is going on.It is important that the doctor knows. It helps me to keep a list available to jot down stuff to ask/talk about with her as I think of it.

Best wishes and hope the legs calm down.

-Pat

victory10

Jaylo969 said:

Hi Tastykake
Yes, I believe you probably have neuropathy. I am on Folfox also and it was after my 3rd treatment that my legs from knees down and feet starting getting real bad. I couldn't feel the floor under my feet. I had to have my dosage lowered for my fourth treatment and that worked out well, or so I thought until yesterday. The neuropathy is back as bad as before and now my left hand is numb.I am due my 6th treatment on Tuesday.

Be sure and tell your doctor about this and anything else that is going on.It is important that the doctor knows. It helps me to keep a list available to jot down stuff to ask/talk about with her as I think of it.

Best wishes and hope the legs calm down.

-Pat

Nuropothy
I am just finishing up on the 5th round of this chemo drug stuff. i experienced the pain in my leg this time although not as severe as you did. I asked my Oncologist to reduse the Oloxiplatin but he said wait for next time.
O.k so this time I battled through heavy sweats, swollen and painful neck lymph nodes (fighting for me I know) and fatigue.

I am so thankful to say that today I am baaaaaack so I'm going to just enjoy feeling well and doing little tasks around the house...

I hope you don't have to experience that again. Each treatment have totally different experiences I am finding out. Just because you experienced it this time, doesn't mean you will experience it next time. Fatiqueand not wanting water is a constant for me but everything else is different. The 4th treatment I had a rash and swollen fingers. Oncologist couldn't figure out what caused it so he gave me a streroid infusion and cream to stop it. It left in 2 days after that. He said the body will go through many changes so he told me to take it one day at a time...

dianetavegia

Tastykake
I felt quite shaky several time for a few days after tx but it would pass. After all 12, I'd hold on to Jim's arm when we walked thru a parking lot or around a store but did fine in the house. Do mention this BUT since you had so much involvement, please don't give up on chemo. I'll be 60 this year and I made it thru all 12 FOLFOX tx's.

Hang in there my friend!
Diane

geotina

Tastykate
Yes, it can happen. It happened to my husband. A few times I caught him putting his arms out for balance. He also keeps a cane in the car but doesn't use it very often but will if there is a lot of walking to do, like in a casino, or something like that. He really doesn't go to the mall very often and in the grocery store there is the grocerey cart to hold on to. Going up and down stairs is tough, you will learn to hold on and take one step at a time. Don't do anything you don't have to the days of treatment, just take it easy. You will learn to adapt now that you know this can happen. Take care - Tina

RickMurtagh

Folfox
The experience people have with Folfox varies so much. Some react to the Oxalipaltin more and some to the 5FU. Each has symptoms that can be disabling in some fashion. Stay with the treatment, Oxaliplatin to at least the 8th treatment (I only managed 7) and the 5FU to the 12th. Toward the end of treatment you might consider quality of life issues, like temporary or permanent neuropathy, but not at the beginning. The dosages of course can be regulated and that is the job of your oncologist. Just be patient and cautious. It always helps to have a friend nearby if symptoms are severe.
I had neuropathy just during the 3 days of chemo until the end. Now, I always have it. Sometimes, when I bob my head (something I do by habit as a way of affirmation when someone is speaking) I sometimes get it from the base of my spine to my feet. It can be sensed almost anywhere, but tends toward the extremities.
There was a woman at one chemo session that could not breath the 40 degree air outside without being brought to tears, it was her third session. I did not have a problem until the last few sessions and my reaction was not as severe.
I can only tell you to stay the course for the best results, keep warm and keep as active as you safely can. I do hope you experience improves. Best of luck and make sure you tell your oncologist exactly what is going on with the effects of your treatment.

Buzzard

RickMurtagh said:

Folfox
The experience people have with Folfox varies so much. Some react to the Oxalipaltin more and some to the 5FU. Each has symptoms that can be disabling in some fashion. Stay with the treatment, Oxaliplatin to at least the 8th treatment (I only managed 7) and the 5FU to the 12th. Toward the end of treatment you might consider quality of life issues, like temporary or permanent neuropathy, but not at the beginning. The dosages of course can be regulated and that is the job of your oncologist. Just be patient and cautious. It always helps to have a friend nearby if symptoms are severe.
I had neuropathy just during the 3 days of chemo until the end. Now, I always have it. Sometimes, when I bob my head (something I do by habit as a way of affirmation when someone is speaking) I sometimes get it from the base of my spine to my feet. It can be sensed almost anywhere, but tends toward the extremities.
There was a woman at one chemo session that could not breath the 40 degree air outside without being brought to tears, it was her third session. I did not have a problem until the last few sessions and my reaction was not as severe.
I can only tell you to stay the course for the best results, keep warm and keep as active as you safely can. I do hope you experience improves. Best of luck and make sure you tell your oncologist exactly what is going on with the effects of your treatment.

I did 10 rounds of oxy and I also had the nerve feeling...
when I moved my head quickly in my feet but it is gone now..so it is getting slightly better.....

Kathryn_in_MN

Oxaliplatin neuropathy and toxicity
I've had more experience with this issue than most, unfortunately. I won't go into it all here, but will give you some suggestions. I did have severe calf cramping a few cycles which caused issues like you've had. They think there were two reasons - one is that my potassium levels fell too low (very odd with all the bananas and Gatorade I have). The other was a rare oxaliplatin toxicity issue I had.

►Take ALA (alpha lupoic acid) supplements - proven to help neuropathy in diabetics and in studies for chemo patients now. 1200mg per day.

►You are getting the calcium and magnesium - pre and post, right?

►Ask to have your infusion time slowed down; 4-6 hours rather than 2 hours. It can make a huge difference. I would strongly encourage you to suggest this to your oncologist - insist on it. The more I've looked into this, the more I've found how much difference it makes for almost everyone on oxaliplatin. I can't believe they haven't just gone ahead and changed the protocol to 4 hours for this drug anyway.

►and for anyone with allergic reactions to oxy, there is a desensitization protocol that worked well for me - plus steroids are a big help.