Neuropathy improvement: individual experience

[Jannine]

I've wished there were more anecdotal information out there about neuropathy improvement over time, because it seems like such a mystery to me. If you are experiencing neuropathy improvement, please post here with your details. I think it would be helpful to others who are concerned about this side effect.

It's now been about 5 months since my last Oxaliplatin dose, which had already been cut down to 75% strength. At its worst, about 1 month after my last dose, I had trouble keeping my balance with my eyes closed (especially noticed this in the shower), had trouble buttoning buttons, and had trouble writing without having to focus all my attention on the mechanics of writing. If I straightened my arms completely I had a weird electric sensation that ran the length of my arms and was very uncomfortable, but not painful. Washing my hair in the shower felt completely weird on my hands. I quit using my fingernails for anything I normally do (basic things like getting dirt out from underneath other fingernails) because I couldn't tell how much pressure I was applying, and I was worried I might hurt myself. I had to look at my hands to tell where to put them on the keyboard (I am a touch typist). My feet were mostly numb, and were pretty numb to touch almost up to the knee.

My neuropathy has been improving in fits and starts. I may go 3 or more weeks without improvement, and then suddenly I realize that things are different. Or I might have a week where things seem a bit better every few days.

My trouble with handwriting only lasted a few weeks, and I have no trouble with buttons now. Washing my hair feels nearly normal. My fingertips feel weird but I have enough sensation to do everything I would normally do. All the really awful side effects above have resolved, although my lower legs below the knee and my feet still are pretty numb to touch. I still can't walk barefoot comfortably. But my feet do have a bit more feeling than they did 5 months ago.

I'm a hobbyist weaver and I'm now working on putting a warp on my loom, after worrying that I might not get to weave again. The threads are fine but I think at this point I can probably handle fine threads.

At its worst, I was really worried that I should have stopped the Oxali sooner. (We stopped it when I started having trouble keeping my balance in the shower with my eyes closed.) I wasn't sure that I wanted to have neuropathy that bad for the rest of my life. But at this point I'm pretty sure my hands will keep improving, and I am hopeful that my feet will eventually improve too. Even if it stopped where it is now, I no longer feel that it is having a negative impact on my quality of life.

I have been taking 600mg of Alpha Lipoic Acid daily, and recently started taking 5,000 IU of Vitamin D3. I have no idea if the ALA has helped, obviously.

I'm hoping this offers some useful information to those who have concerns about neuropathy from Oxaliplatin. Things vary a lot, so this is just my experience. If anyone else wants to share their experiences in this thread, please do!

[NHMike]

I'm 11 months out and I don't think that there's been any change. I feel it in my toes and slightly in my fingertips. I do regular balance exercises and core work to counteract sensitivity issues (or lack of). I'm generally able to function though.

[Dionca]

I experienced exactly the same symptoms as you mentioned, including the weird "electric" sensation in my arms when outstretched. I think the unexpected (and potentially dangerous one) was the lack of balance in the shower. If I closed my eyes to shampoo my hair, I would be very unsteady and would have to hold on to the shower rack with one hand and wash my hair with the other.

By the six month mark, most of the symptoms had gone away, my hands were back to normal, and I no longer had to go through the balancing act in the shower, and the only remaining problem was my feet (although they were not as bad as had been). I found it helpful to keep a weekly diary, detailing my symptoms, so that I could see improvements gradually happening.

What I didn't realize was that the neuropathy symptoms get worse after you stop chemo - this can be alarming if you are not expecting it. Then they gradually start to taper off over the next few months. In my case, I have permanent neuropathy in my feet and can feel the "tightness" up to my knees. I'm not really in any pain, it's more annoying than anything as I now have to place my feet in my shoes, rather than wriggling them in as I normally did. Walking long distances can be difficult and tiring, but everyday walking is just fine.

[AmyG]

Did yall have issues with "first bite syndrome" as well?

I got my first folfox/Avastin treatment yesterday (currently wearing my sweet take home ball) and already noticed how jarring it is to eat or drink anything cold. I assume that goes away at some point, but is there any relationship with that side effect and significant neuropathy?

[ab123]

I'm 6.5 years out from treatment and still have some residual neuropathy from the Oxaliplatin, but I don't really think about it anymore. I'd say my feet are different and I can still tell they aren't the way they used to be, but I don't have any numb spots. It's just a little tingly - a different sensation - especially barefoot. I don't really like to go barefoot as much, but it doesn't hurt or anything. It's kind of a very mild pins and needles. But again - I truly don't think about it. I think my balance may be slightly affected when eyes are closed, in the shower for instance, but I have never fallen as a result. I have no impairment or reduction in mobility.

After treatment it continued to get worse for maybe a couple months, and then it steadily got better - pretty much completely resolved within a year to where it is now. I only notice any permanent change in my feet. Cold sensitivity, mouth discomfort, and finger numbness were all acute symptoms that went away pretty quickly. My feet started with feeling like my socks were bunched up or that there was something in my shoe. But I no longer have that sensation.

[NHMike]

Did yall have issues with "first bite syndrome" as well?

I got my first folfox/Avastin treatment yesterday (currently wearing my sweet take home ball) and already noticed how jarring it is to eat or drink anything cold. I assume that goes away at some point, but is there any relationship with that side effect and significant neuropathy?

I had first bite. After a while, you just take that first bite very carefully. It wasn't permanent for me.

[ginabeewell]

Did yall have issues with "first bite syndrome" as well?

I got my first folfox/Avastin treatment yesterday (currently wearing my sweet take home ball) and already noticed how jarring it is to eat or drink anything cold. I assume that goes away at some point, but is there any relationship with that side effect and significant neuropathy?

For me, the cold sensitivity would go away in a few days - stretching out a bit more with subsequent doses. So at first it lasted 2 days, then 3, then 4, etc.

Most - but not all - of my neuropathy seemed to resolve by the end of the first week. So by the time I had my next dose of chemo, I wasn't experiencing it any more.

I did do weekly acupuncture and they treated my fingers and feet with a laser treatment which is supposed to help with neuropathy.

I haven't had Oxy since mid-Feb, and I can kind of feel a little numbness on the bottoms of my feet, but that's it. It's not super noticeable or creating any issues for me. Dr Kemeny was hesitant to keep me on FOLFOX, but I have tolerated it well enough - and it's worked for me well enough - that I asked her to consider it. Not sure if her intent is to add it back in at some point or move me to FOLFIRI. (My first chemo post-surgery was FOLFOX hold the Oxy.) Guess I'll find out next Monday!

[susie0915]

I'm 3 years out from chemo. Still have neuropathy on the bottom of my feet. Tingly and weird feeling especially barefoot. It doesn't prevent me from doing anything but is annoying. I think I have just gotten used to it, since it really doesn't prevent me from doing anything. My hands are okay, I used to drop things but don't anymore.

[Gravelyguy]

I had first bite and cold sensitivity which was a lot of fun in MN in the winter. I also had some balance issues but nothing severe. I never had any finger numbness but did get progressively worse foot numbness. It felt like the bottoms of my feet were falling asleep. I didn't notice it until round 10. I am a cross country and track coach so was concerned about long term trouble. I stayed on full dosage for round 11 but reduced to 80% Oxi on round 12. I am just over a year from my last chemo. The only lasting effects are the numbness on the bottom of my feet. It is almost gone but I do feel it particularly at night lying in bed. It does not in any way impact my activity. So feeling pretty blessed!

Dave

[claudine]

My husband had his last Oxaliplatin infusion mid-October. Neuropathy continued to get worse for a few months, then gradually got a little better for his hands (he noticed the neuropathy gradually "shrinking" from two digits to one digit to one-half of a digit...). No real improvement in his feet, unfortunately; he's never felt out of balance, but they're painful, making it difficult to walk for any length of time. I massage them every night with CBD cream and that helps, at least temporarily.
We were told it could take a year, or more, for things to improve. Unfortunately, since his Oxaliplatin treatment did not work, he's now on Folfiri + Avastin. Not supposed to exacerbate neuropathy, but it does its own damage to fingers and toes...
Has anyone used a Shaitsu foot massager and noticed improvement?

[Soccermom2boys]

Has anyone used a Shaitsu foot massager and noticed improvement?

I have a Homedics foot massager that I use regularly. Unfortunately I did not think to purchase it soon enough to make drastic improvements with my feet, but I do recommend it. Your husband finished his treatments only about six months ago so he is still in that stage where he could have progress with the neuropathy diminishing so I would strongly recommend the ~$90 investment (coupons, sales via Kohl’s or Costco, etc.). I took the approach to avoid any stimulation to my feet when the neuropathy came on strong within a month of finishing my eight rounds of Folfox and wish now I had forced it a little more so that maybe it would have had a better long term outcome. I am like several others above who definitely don’t have a normal feeling in their feet, but it also doesn’t keep me from walking and running and no balance issues, but damn it is annoying when I go to bed at night and I just feel the “oddness” of it or about not being able to easily slip on certain types of shoes, etc. However, given that I am three years out of treatment with no evidence of disease, I can live with it!

I bought the foot massager when I was a year and a half out of treatment so by that point the damage was done/permanent, but if I could go back in time I would have bought one from the get go and given my feet the extra stimulation to help reset the nerves so to speak.

Best of luck to everyone dealing with their own version of neuropathy—it truly is a “unique” beast for each of us.

[Jannine]

I had first bite symptoms pretty bad at first, but that pretty much faded away after 8 treatments or so.

With the cold sensitivity I found it very useful to run my hands under warm water for a good 30 seconds to warm them back up thoroughly. If your hands feel tingly again before you even get them dried off, they aren't warm enough yet; go back to the sink!

For me the cold sensitivity lasted a little over a week. I could eat ice cream for a few days before each infusion. But right after getting an infusion I couldn't even drink water straight out of the tap; even that was too cold. I had to warm water up in the microwave.

[claudine]

Thanks Soccermom2boys, that's great advice, I'll look into getting him a foot massager.

Claudine

[Dionca]

Don't place too much hope in a foot massager (that's the same as a TENS machine right?). I used one religiously starting midway through chemo, and for months after, hoping to ward off neuropathy, but it didn't do a thing for me.

In fact, a cheap wooden foot roller helped me more (albeit temporarily) as it seemed to warm up my feet a bit. We all seem to experience neuropathy differently - some have burning hot feet, but mine were icy cold. I still have to wear socks, even to bed, but my feet are nowhere near as bad as they were - they felt like 2 blocks of ice attached to my legs 

[juliej]

I am like several others above who definitely don’t have a normal feeling in their feet, but it also doesn’t keep me from walking and running and no balance issues, but damn it is annoying when I go to bed at night and I just feel the “oddness” of it...

Agree! I am several years out and while the neuropathy has disappeared in the ball of my foot, it's still present in my toes. Since I'm a rock climber and use my little guys for adhering to granite walls, this is a serious issue for me!

Since they just feel odd and not "cold" I have to touch them to realize they are actually freezing and put some socks on. That seems to increase the feeling in them, so this winter I tried sheepskin slippers around the house to keep them warm.

HFS (hand and food syndrome) from years of Xeloda also caused me to lose 4 toenails. One is valiantly trying to grow back (go, dude, go!), but the other three toes look like like tiny bald guys!

Juliej