Neuropathy after chemo

[Talib]

HI,
I wonder if you could help me. I finished Folfox 2 months ago and during the treatment my Neuropathy wasn't so bad and in fact when going to my 12th treatment, I had nothing, no symptoms at all. This means that I had full dose for the entire treatment.
However, Now I have symptoms that keep getting worse and worse. My hands are losing functions, my feet are getting worse. Just this week for the first time I started having actual pain.
I would be grateful if anyone can share similar experiences with me.
Also, How long after the chemo did it continue to get worse? and how long to get better (somewhat better? completely gone?)

Thanks,

Have a great say everyone

[kellywin]

I had really no issues with neuropothy that I can remember during chemo, but it crept in a month & a half or so after I stopped, it probably peaked at 3/4 months, it subsided some, but never went away. I take Gabapentin (Neurontin) and it's helped immensely.

[JDinNC]

I never had any problems during chemo but one week after finishing my neuropathy set in. It's been two years since finishing chemo and I still have it. I take gabapentin daily...it does not cure it but really helps the symptoms. I don't expect my neuropathy to go away....so I just deal with it.

[teacher49]

Same here. I finished 11/12 chemo - FOLFOX6. I had no symptoms until treatment 10, when my feet suddenly lost all sensation on the bottom sole of foot. Unfortunately, I was in the shower and I fell hard, gave myself a huge hematoma on by flank.

Reduced oxaliplatin for tx 11 and only 5FU for last tx

I am 5 years later and I still have peripheral neuropathy in my feet. I take 300 mg of Lyrica daily and it helps with the constant tingling and feeling of sand in my shoes.

[Mister Wu]

Señora has the same experience as others have stated.

The neuropathy set in after the chemo. Not getting better.

[Lund5505]

Same story here. No symptoms until after stopping oxi after round seven. It continued to get progressively worse for three months then began to recede slightly. I still have it two years later. I tried gabapentin and lyrics to no avail. Good luck and hopefully these work for you.

I sincerely wish oncologists would realize how damaging it is to continue to the point of ruining lives.

[Ajane]

Like the others, neuropathy started while on chemo, at round six of eight. It was manageable with decreasing dosing. It was about six weeks into maintenance that it hit. Started taking the "chemo cocktail" that helped until it plateaued at about eight weeks. I've been on both the cocktail and gabapentine for a month now an doing better.

[Talib]

Thank you all for your answers. Not very happy ones but I guess I'll learn to live with it if I have to (As long as it is "live"...)

Is there anyone out there for whom it got worst after chemo but actually went away?

Anyone? someone?

Great day,

Tali

[NoFear32]

I had neuropathy issues from round 1 and made sure my onc was always aware of things that were getting worse, etc. My onc stopped my chemo (Oxi + Zeldoa) at round 8 because of the worsening neuropathy issues. He told me that the neuro symptoms would get worse about a month after stopping chemo before they got better (if ever). For me, this came true; I stopped chemo at the end of September, then symptoms became worse around December and stayed that way for about 2-3 months until I started noticing them improving. I am not 100% back to normal and don't expect I will ever be, but it is better than it was a couple of months again.

Neuropathy I am still experiencing: numbness/tingling bottoms of my feet (can't stand to wear sandals or walk around barefoot!), joint soreness in my knuckles and knees, cold sensitivity in hands, and extreme fatigue after doing something vigorous.