Numb and numberer

[jts]

Hi all,
Tomorrow will be the day when I would have started another infusion of FOLFOX (minus the OX), except that I've now completed 12 rounds and I don't have to do any more - yay!! Also my CEA took a break from the constant increase it's been doing since the surgery, and stayed the same for a round - kinda yay!!

For most of the chemo I had no notable neuropathy, until after round 8, when some numbness in my fingertips lasted until the next round and the oncologist agreed to remove it. So now I've been about 10 weeks without oxaliplatin, but the numbness keeps getting more and more, and it's really annoying. It's expanded from my finger tips, to my 2nd knuckles, and now I only have somewhat normal sensation in the middle of my palm and wrist. My hands still have some sensation, but it's like they're wrapped in thick bandages - there's no sensation on the skin. I can poke my fingers with a fork, and it's just a dull pressure. Typing feels silly because my fingers don't know where they are; it feels like I'm just play-typing and make so many typos. I drop things, and my handwriting is hopeless (more hopeless than normal).

My feet and legs are really weird too. My lower legs and feet seem to not know where they are. I always feel like I'm going to stumble if I'm not concentrating on it. It's kind-of like if you tie your shoes way too tight, or sit on your legs in a funny way for too long. Except the feeling doesn't come back! It's getting really annoying, and it's frustrating that it's progressing in the wrong way, even though I'm 2 months out from using oxaliplatin.

I've read lots of accounts on this forum and elsewhere, so I know this isn't unexpected, and that it's supposed to get at least somewhat better over 6-12 months. I'm just complaining, and posting it in case other people feel like relating.

[beach sunrise]

To relate? Yes, I am so glad to be done with oxaliplatin too!!!
Just know neuropathy can take a while to clear your body.
I think I had neuropathy in my face, hard to explain the numbness of it. I also couldn't write my name. It looked like I wrote it with my eyes shut, not even able to stay on the line. My finger tips feel smooth like a brick layers would even though they aren't so my husband tells me. So ya, I have some left over side effects also I hope go away.
Don't poke to hard with that fork

[Monimom]

Hi, My DH has had 14 rounds of chemo now, they stopped the Oxaliplatin 3 treatments ago due to numbness, and since its been stopped, its getting worse... his fingertips are also numb as well as his feet, he said they feel "cold" but theyre not... so it seems the longer without it the worse symptoms are, hoping we can find some way to clear this out !!

[texazgal]

https://cbcn.ca/en/blog/our-stories/sid ... neuropathy

My daughter found this link with some OTC supplements that may help with neuropathy. I've done 4 rounds of Folfox and have the hand problem only instead of numb when I touch cold things it's like an electric shock. It may progress to numb as I've 8 rounds to go.
Yes, by all means come on here to complain. Who else would understand it as well as us?

[Siti]

You’re definitely not alone on this. My husband too suffers the same side effects. He’s usually very independent and sometimes he would need assistance to open a water bottle cap. I guess on top of neuropathy, he has hand and foot syndrome too.

To adapt, there a few things that he found useful.

Acupuncture: he didn’t believe in alternative medicine initially and I told him to give it a shot since it’s been around for a few millennia. Well he’s been a convert since his first visit. He goes once every 2-3 weeks.

Electric Foot Massager: He got one off amazon and would massage his feet every day, especially after a long day at work.

Shoes: He bought shoes that are a size bigger and added silicone insoles so that it would give him extra cushioning. Though I’m not sure if this is more for the HFS or neuropathy or both.

[jts]

thanks for all the commiseration and tips. The numbness seems to have stopped getting worse. It may actually be getting better, it's hard to tell. If I run my fingers lightly over a rough surface I can feel something, whereas before it was nothing.

My ability to move my fingers seems to be a problem now. I don't know if that's reality or just my perception because of the numbness. It's like having my hands frozen after a bike ride in winter; the first knuckle moves just fine, but the rest of my finger is kind-of rigid. I can flex them but it takes concentration, and it seems like they can't bend like usual. Doing buttons or buckles is tough.

I am signed up for a PET scan on monday. Maybe this is crazy, but my mindset right now is that I *know* the cancer is still hiding somewhere and I just want to find out where it is.

[NHMike]

I had chemo in the winter and it was usually quite painful driving home as the steering wheel was freezing. I wore head to toe clothes with a balaclava to cover my face and neck and ski mask to cover my eyes.

Some things that help: magnesium (or other electrolytes), getting cardio to improve circulation, an electric kettle because you can't drink anything cold. I still have some neuropathy two years after finishing chemo. It's manageable for now.

[perthgirl]

I feel as though I’m reading my journey with oxaliplatin when I read everyone’s posts. I remember my oncologist saying it could get worse for up to 3 months after my last dose and sure enough it did. It hasn’t really bothered me until after treatment stopped.

Couldn’t feel my finger tips. Couldn’t write without it looking like I was writing with my sons ice hockey gloves on. My phone didn’t recognize my thumb print for Touch ID.

Now 10 months out I can write easily and my phone recognizes my thumb print.

I found crocheting has really helped - don’t laugh!!

I just wish I could crochet with my feet. They are taking longer to head back to some kind of normal.

My oncologist also said what ever improvement I had at the 18month mark would be it. So I’m keeping my fingers crossed it will keep improving.

It’s a long road we travel. I’m grateful for where I am in my journey. So if it means I have to live with tingly feet so be it.

[benben]

L-Glutamine

It seems to work well for me. I'm 2.5 years out from chemo and if I take my daily Glutamine pill experience zero neuropathy.

I've been out of it for several weeks and have noticed a slight return in the fingers and feet. So I'll be picking up more.

[claudine]

Interesting. I hadn't heard of it for neuropathy before. I'll get some for my husband, thanks benben!

[perthgirl]

I hadn’t heard of L-glutamine for neuropathy either.
Something to consider
Than you