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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..

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sueb4bs | @sueb4bs | Feb 1 8:39am
In reply to @rjjacobsen "I had FOLFOX6 and shortly after starting they dropped the OX (oxaliplatin) because of severe side..." + (show)
@rjjacobsen

I had FOLFOX6 and shortly after starting they dropped the OX (oxaliplatin) because of severe side effects. I had some, but not severe neuropathy - mine was mainly numbness and tingling in fingers, hands, feet and the mouth. Had some dizziness as well. Voice, hearing, vision and sense of taste can be impacted. Anything in which the nervous system is involved can be messed up.

I did not have severe pain, so I didn't take Gabapentin as suggested. I'm approaching 2 years after I ended chemo and still have some minor numbness and tingling remaining.

I saw a reference that it takes between 1 and 2 months to recover from each month of chemo, which seems correct in my experience, but the source wasn't from a verified source like Mayo or Cleveland Clinic or Sloan-Kettering.

It was difficult for me to be patient with myself dealing with the post-chemo symptoms. There was so many things I struggled with. I also had cancer surgery/chemo/recovery during the time when COVID was spreading fast so I was not allowed to get out much until a year after I completed chemo - the thinking of my medical team was that my immune system wasn't at full strength.

All my best to you for success and full recovery.

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Very helpful, thanks. Since I am living away from the U. S. THINGS ARE MORE COMPLEX. OX protocol remains the same around the world, my oncologist told me.

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angielewis1959 | @angielewis1959 | Feb 1 8:00pm
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..

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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.

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1 reply
roywalton | @roywalton | Feb 2 9:23am

Recommended by the clinic was to wrap fingers and toes in cold packs during chemo infusion, as this constructs the blood vessels and decreases the amount of Oxaliplatin in those areas. It really works! The chemo nurses already had a great supply ready to use

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myjiggers1 | @myjiggers1 | Feb 2 11:45am
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..

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Some have to abstain longer or period… I was good after a week, but only made it thru 2 rounds of it due to an allergic reaction.

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cjay | @cjay | Feb 2 12:54pm
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.

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@sueb4bs)
Try magnesium oil for the massage. Like most neuropathy remedies I’m not sure if it’s helping, but I use it on my feet every night. Also taking very low dose Gabepentan and amitriptaline.

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rjjacobsen | @rjjacobsen | Feb 2 1:47pm
In reply to @chuckmii "Wife has stage 4 colon cancer and yes was told the same thing. May not affect..." + (show)
@chuckmii

Wife has stage 4 colon cancer and yes was told the same thing. May not affect you but it did her. Even water had to be room temp and the more cycles she had the worse it got/longer it lasted. We opted to not use OX in our second set of 6 so far due to the side effects.

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I had to wear gloves to pull anything from our freezer.

It's not just cold - sensitivity to hot things too.

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magsbrad | @magsbrad | Feb 4 11:41am

Mine lasted for about 2 months. I was very fortunate and wasn’t really badly affected by chemo. I am 65 years old and my operation to remove my sigmoid colon was 2/12 years ago. I live in London UK but I am considering looking elsewhere for treatment as other countries have new drugs still awaiting clearance for use in UK. Good luck.

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sueb4bs | @sueb4bs | Nov 3 1:43pm
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..

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Yes, I have poor communication with treating doctors in Ecuador where I live, medical culture is different and toughing out js pretty standard.
How are things now for you?

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sueb4bs | @sueb4bs | Nov 3 1:47pm

I know from first hand experience that cold water, ice in cold drinks, cold hands from reaching into the frig. cold weather , or anything at all that is cold, simply AVOID IT.

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sueb4bs | @sueb4bs | Nov 3 1:55pm
In reply to @colleenyoung "Hi @sueb4bs, different people experience different levels of neuropathy with FOLFOX. For some people it is..." + (show)
@colleenyoung

Hi @sueb4bs, different people experience different levels of neuropathy with FOLFOX. For some people it is temporary, for others it is long term or even permanent. Because my dad had type 2 diabetes, they monitored his neuropathy symptoms closely and reduced the oxaliplatin amount. Oxaliplatin is known for causing neuropathy.

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This js not esp helpful . I know, as most pts with colorectal ca know, that neuropathy is challenging. Most docs tell you this. They also counsel that there is no tx for CINP.
I have no co-morbidities or chronic illness of any kind.

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