Neuropathy question

[AussieAssCancer]

Hi guys,

Just wondering whether anyone experienced the same thing? I'm seeing my oncologist in a couple of weeks for the results of my scan/bloods next week so will ask then but thought I'd check here first.

I finished chemo at the end of August and they dropped the Oxaliplatin for the final round to due onset of neuropathy.

It got much worse, particularly in my feet with random bolts of pain, permanent pins and needles and toes curling etc overnight.

Now, it's changed but is difficult to describe, other than that my feet now feel like they've been in a wet sock all day. They're still super sensitive (i.e. I can't walk on grass in bare feet) but generally speaking it's not too unbearable.

My question is: Is the change from Constant Pain to wet sock feeling indicative of an improvement?

I can live with this if this is as bad as it gets and I'm confident it's not getting worse but obviously, is prefer an improvement!

Cheers,

GK

[plastikos]

Hi GK,

It's different for every patient I think. My symptoms ranged from numbness of my fingers and toes to pins and needles sensation. Now more than a year after my last exposure to Oxaliplatin I have no residual neuropathy. Hoping for the same for you as well.

[AussieAssCancer]

Thanks Plastikos. Good to hear there's hope

[teri3]

I've had neuropathy since chemo last year it was improving slowly but I had to go back on chemo in August and the pins and needles feeling got worse but I believe it's hand foot syndrome. My oncologist suggested taking B6 twice a day and it seemed to help. But everyone is different and I've talked to people who it took years to resolve but it resolved.
Hugs,
Teri

[nomoretacos]

My neuropathy started after my last chemo treatment and is now constant - I thought I was lucky and escaped unscathed! It started off with a weird shiver/pins and needles down my lower calves to my feet multiple times a day which has now ceased but then I noticed my feet were numb and it has never left. Its a strange feeling that's hard to describe, it's not painful at all and something I can live with as long as it doesn't get worse. I haven't been able to discuss it with my Onc as I've since been discharged but might mention it with my GP I'm seeing next week to see if there's anything I can do or take

[esk2poo]

Sorry, just about 5 years out from my last chemo. Still have a lot of pain in the feet, wet sock feeling, walking/balance issues, and peedles. Pins and needles. My hands don't hurt too much but a lot of difficulty with fine motor skills. Forget texting. After a year and a half, my onc said I was one of the lucky ones that had permanent neuropathy.

[PainInTheAss]

Hello, sorry you're having to go through this.

When I was going through treatment, I found a study on neuropathy that showed a general trend for neuropathy to appear or progress to the peak of symptoms anywhere from the first infusion until about three months after the last infusion. There is a lot of variation in this, so just asking a few people isn't going to give the full range of possibilities.

The study also showed the symptoms dissipating anywhere from a few weeks after the peak of symptoms to two years after the last infusion. Again, there is a lot of variation. I had read some posters here saying that they had even more improvement after three years.

I am over two years from my last infusion and the neuropathy is almost gone in my hands. I have some still in my feet, but I don't have the problems with losing my footing that I did at first. I rarely had pins and needles, so just that wet sock feeling. I saw a slow, gradual improvement. It's so slight that I almost didn't notice it as it was happening.

The one thing I do notice is that crampy, muscle locking that happened after staying in one position for too long has almost disappeared. I am soooo happy about that. The pain of moving after getting "locked" was so much that it made it hard to move after sitting. I almost feel like my old self now, and that feels great.

[testing765]

Hi. I started to have some numbness in my fingers, so my oncologist stopped the oxaliplatin after nine treatments with it. The neuropathy did not start for me until I was completely finished with the folfox chemotherapy. It got really bad, pins and needles constantly in both hands and feet. I tried gabapentin when the neuropathy first started, but the gabapentin caused me to lose my balance and I stopped it for awhile. I also tried duloxetine which is an antidepressant that has been shown to help with diabetic peripheral neuropathy. The duloxetine did not seem to help so I stopped taking it. I eventually went back to the gabapentin, and I stopped getting negative side effects from it. I am now 1 year and 8 months from the last chemotherapy treatment. I never had a wet sock feeling, but the pins and needles and numbness has lessened. I am walking a lot more, the neuropathy increases while I am walking, but the walking seems to lessen the neurotherapy throughout the rest of the day. I hope your condition improves, it can take a long time though.

[Swirdfish]

I did round two of folfox yesterday, no nausea but just cold sensitive to throat I also have got pins and needles twice that comes and goes.

Is that neoropathy?

[AussieAssCancer]

Thanks guys. Seems like it's a really variable phenomena. As I said, it SEEMS to be getting better and like Testing said, it may well have something to do with walking more, which I'm trying to do lose some weight and get fit for my reversal surgery in Feb...

Swirdfish - that is a very common side effect from
Folfox and while I think it's a form of neuropathy, it's not the long lasting type that we're talking about. If it hangs around though (ie doesn't stop shortly after you've touched something cold) then you should tell your oncologist as they will adjust the amount of Oxaliplatin that you receive to avoid permanent damage.

Cheers,

GK