1. < Colorectal Cancer

Neuropathy with FOLFOX chemotherapy - Stage Three colon cancer

Posted by sueb4bs @sueb4bs, Oct 31, 2023

Brief question: NEUROPATHY : Large tumour removed in emergency surgery last of May 2023. Abig surgery. I am doing muy alto muy bajo as it was obstructing the bowel -- Live in Ecuador so everything related to CANCER IS OBSCURE, to put it as succinctly as I can!

Neuropathy conditions can be changeable and also highly individual. Do you experience neuropathy , how long, when and what might I expect? Muchas gracias desde Ecuador..

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

sueb4bs | @sueb4bs | Nov 3 1:56pm
In reply to @tray1961 "Has the doctor told anyone to wait at least five days after OX before drinking cold..." + (show)
@tray1961

Has the doctor told anyone to wait at least five days after OX before drinking cold beverages or to also make sure you wear gloves if reaching in refrigerator? Avoid cold things..

Jump to this post

Yes...

REPLY
rjjacobsen | @rjjacobsen | Nov 4 11:09am
In reply to @angielewis1959 "I was diagnosed with Stage 3 Colon/rectal cancer in 2014. I am now cancer free and..." + (show)
@angielewis1959

I was diagnosed with Stage 3 Colon/rectal cancer in 2014. I am now cancer free and no longer
have to see my oncologist.
I had nerve damage from the Oxaliplatin in my hands and feet. The nerve damage in my hands got better but I still have nerve damage in my feet clear up to my ankles.
The chemo was awful...I couldn't drink anything cold and had to have gloves on to take
anything cold out of the refrigerator.
All I wanted was a cold glass of ice water and now that is all I want to drink. The nerve damage has now went on to become Peripheral Neuropathy and foot drop.
It has been a wild ride, but I'm still in the game and God is so good.

Jump to this post

I had a similar experience but probably 5 years later...

It took a long time (like 2 years) post-chemo for most of the nervous system damage to heal and I still have some residual symptoms like neuropathy in the feet and numbness in the hands. In my case, it also affected my vision, hearing, balance and speaking besides the swallowing. Also am experiencing some potential dementia-like symptoms - don't know if the chemo-related or something else. Yes, there is something called "chemo brain"!
https://www.mayoclinic.org/diseases-conditions/chemo-brain/symptoms-causes/syc-20351060
I agree entirely with you about this: "It has been a wild ride, but I'm still in the game and God is so good." Amen!

REPLY
angielewis1959 | @angielewis1959 | Nov 4 1:45pm
In reply to @rjjacobsen "I had a similar experience but probably 5 years later... It took a long time (like..." + (show)
@rjjacobsen

I had a similar experience but probably 5 years later...

It took a long time (like 2 years) post-chemo for most of the nervous system damage to heal and I still have some residual symptoms like neuropathy in the feet and numbness in the hands. In my case, it also affected my vision, hearing, balance and speaking besides the swallowing. Also am experiencing some potential dementia-like symptoms - don't know if the chemo-related or something else. Yes, there is something called "chemo brain"!
https://www.mayoclinic.org/diseases-conditions/chemo-brain/symptoms-causes/syc-20351060
I agree entirely with you about this: "It has been a wild ride, but I'm still in the game and God is so good." Amen!

Jump to this post

I am so sorry you had to go through this too. Being diagnosed 10 years ago, I thought my battle was just beating cancer. With God's grace, I did beat it. I had no idea that I would now have to battle the effects of the Chemo and radiation.
I am not sure my nervous system has returned to normal or if it ever will. I have noticed that my hips are uneven and wonder if it is from the radiation in my spine. But like you said, we're still in the game. God is so good.
Good luck to you!
Angie

REPLY
galenagai | @galenagai | Nov 5 3:37pm
In reply to @sueb4bs "Thanks for your comments. Pregabalin I have taken with mixed results. I will try massage and..." + (show)
@sueb4bs

Thanks for your comments. Pregabalin I have taken with mixed results. I will try massage and essential oils which
sounds soothing and may help. My neuropathy is mainly in legs / knees down and gentle massage can help some. Hands somewhat pins and needles , not as bad as feet, ankles and lower legs.

Jump to this post

One week after my final Folfox session I came down with stabbing, burning pain along my waistline and lower back. I am on week 6 now with no relief. I tried gabapentin, acupuncture, and essential oils with no help. My doctor put up the white flag. Now was told to try lyrica but the side effects scare me. Has anyone tried cbd for pain? I do not know of anyone having the nerve pain in this location. Neither heat nor ice work either. Right now I take an oxicoden at night to sleep

REPLY
1 reply
rjjacobsen | @rjjacobsen | Nov 6 10:54am
In reply to @galenagai "One week after my final Folfox session I came down with stabbing, burning pain along my..." + (show)
@galenagai

One week after my final Folfox session I came down with stabbing, burning pain along my waistline and lower back. I am on week 6 now with no relief. I tried gabapentin, acupuncture, and essential oils with no help. My doctor put up the white flag. Now was told to try lyrica but the side effects scare me. Has anyone tried cbd for pain? I do not know of anyone having the nerve pain in this location. Neither heat nor ice work either. Right now I take an oxicoden at night to sleep

Jump to this post

I have to note that while your chemotherapy may be completed, it may not be done with you - it can take a long time to work out of your system and sometimes adverse effects hang on permanently. That said:

This is somewhat mysterious and may not be due to the chemotherapy - the "lower back" and stabbing pain parts may indicate it may be a back injury of some kind for which an orthopedist and spinal imaging may be of help to diagnose.

It may also be helpful to post this on the Spine Health group and see what others with more experience think.

REPLY
View MoreView Less
Please sign in or register to post a reply.