Below is an outline of my progression of symptoms with chemo neuropathy and delayed onset neuropathy. Since I wasn’t originally sure this was a chemo problem, I wanted to provide you the details in case you experience something similar. This way you can act on it quickly and discuss your symptoms with your oncologist.

I made it through chemo relatively unscathed by neuropathy. I was taking B vitamins daily, and my acupuncturist was using points in my fingers to help alleviate any symptoms.

Other than some annoying tingling in my thumb, fore, and middle fingers on both hands, I wasn’t experiencing anything I was concerned about. Even then, the tingling went away a couple weeks after my last Taxol infusion with the help of the B vitamins, acupuncture, and a few Gabapentin thrown in for funsies.

Sweet! Problem solved! Moving on.

Until three months later…

I journal quite a bit, a semi-habit formed after years of working on the boats. It was a way to document life, vent about frustrations, and have an outlet on subjects I couldn’t discuss with the crew. I may write pages each day for a fortnight, or I may take a few weeks’ hiatus.

So when it started to feel weird how I held my pen while journaling, I attributed it to perhaps not writing much lately. Around the same time, my hands felt sluggish at typing. I wondered if perhaps my nails just needed a trim, seeing as that’s usually the cause of my making so many typing errors.

The change in my writing and typing were barely detectable. I couldn’t identify exactly what felt off, I just knew that something was different. And that it was annoying as all get out.

I thought maybe it was a muscular problem. My fingers are thin and they’ve never been strong – maybe they were just a bit weak after chemo? I knew it didn’t really make sense since the muscles had felt fine during chemo, but what else could be the problem since I had finished chemo months ago?

It wasn’t until my trip with First Descents, four months after chemo ended, when another survivor mentioned her difficulty gripping the kayak paddle. She described a couple symptoms that sounded basically the same as mine. Her chemo had finished about a month before mine, and the trouble with her hands started about a month before mine, too.

Eureka! So this was chemo neuropathy after all!

It was frustrating to know that, months later, I was still dealing with chemo side effects. And Lord only knows what other late-onset surprises chemo may have in store. But on the bright side, that gave me a starting point to investigate how to fix it…. Hopefully.

Progression

Soon after, I was noticing a sluggishness in my tongue that was similar to my hand movements. My tongue felt thicker more difficult to move. I’d be 100% sober, yet my tongue moved like I was a few beers in and starting to slur my words. There were even times I wouldn’t talk or eat much because it took so much more effort to form words.

(Maybe I should clarify that last sentence. It’s not like I stopped eating altogether or seemed like some participant of a silent protest, walking around with a whiteboard to communicate. I gained weight that summer, so eating was definitely not a problem, and I could still hold a 20-minute monologue about my previous job and future goals. But sometimes the effort just wasn’t worth it, so my snacking and speech were reduced.)

The real kick in the pants came with my knitting. It’s offensive enough for neuropathy to affect my writing and typing, but my knitting?! That’s my stress reliever, my meditation. I’m 99% sure knitting has played a part in keeping me out of jail when I’m angry. And I’ll be darned (ha! sock knitting joke) if chemo neuropathy is taking away my knitting!

Along with my tongue, my ability to swallow liquids had been altered. It was like I could no longer swallow quietly, but could only loudly “glug glug” as I chugged whatever fluid I drank. To reduce the risk of choking myself as I drank, I started drinking more often through straws. (A metal straw because… sea turtles.)

The Symptoms Continue

The sluggish feeling continued to my feet. Another First Descents alum mentioned the term “drop foot,” and that’s as close a description as I can find to what I felt. Walking took a lot more energy than it had before, and I felt like I couldn’t lift my feet to walk in a smooth motion. Instead, it felt as though I had already been walking for hours and my feet were tired, like I couldn’t lift them so they rolled as I walked.

This pain also crept into my shins. After just five minutes of walking, my legs hurt like I had shin splints. I was forcing myself to walk thinking it might improve the situation, but it still hurt!

Preventative Remedies for Chemo Neuropathy

Vitamin B Complex is often used by chemo patients to help prevent neuropathy symptoms during treatment. I had run out of these vitamins shortly after chemo ended, but in hindsight I would have continued with them a while longer. Though it’s not proven that vitamin B helps with neuropathy, a large number of patients I’ve spoken to reported relief or keeping neuropathy at bay.

If you’re currently doing chemo, I recommend seeing an acupuncturist. I recommend this for several reasons, but chemo neuropathy is one of them. I honestly believe my neuropathy would have been worse than it was during chemo and afterwards had I not being doing acupuncture during treatment.

Another possible prevention is using ice packs on your hands and feet, the areas most likely to experience neuropathy. However, the reason the ice packs work is because they cause your veins to constrict, reducing both the amount of blood and chemo that reaches that area. I thus opted not to do ice packs because I didn’t want to take the chance of chemo not reaching a stray cancer cell. Are the odds slim? Yes. But that was what gave me peace of mind, so I went with it. This is a very personal decision, both with cold capping on the head and with ice packs on the hands and feet, so chat with your oncologist if you have any concerns.

If you start to experience any neuropathy symptoms, consult your oncologist. Neuropathy may go away on its own, but it’s better to get a jumpstart on the situation. Keeping the affected area moving (e.g. short walks or knitting) seemed helpful with my neuropathy, even if it was uncomfortable at the time.

After Chemo

Talk to your oncologist about occupational, physical, or speech therapies. I know it may sound like a lot to do. (Don’t we already have enough doctor appointments?) But these professionals can provide you exercises to strengthen the affected muscles and hopefully keep the neuropathy from worsening.

In lieu of physical therapy, I decided to try and walk a mile regularly to keep my legs going. Though I tried to get in for speech therapy to help my tongue, there was a glitch and I never got started with that. (Long, off-topic story, but rest assured it wasn’t a problem with insurance.)

I did, however, do occupational therapy for my hands. It wasn’t a drawn out thing. I only went twice – once as an introduction and once to learn the exercises that I would continue at home. I highly recommend the occupational therapy, because these are exercises I never would have known to do on my own. But I believe they certainly helped reduce the neuropathy!

If You’re Into Oils…

I was literally grasping at straws to get rid of this neuropathy and prevent it from spreading or worsening. If you’re a fan of essential oils, there are a few oils that are known for providing neuropathy relief.

I found a recipe from Dr. Eric Zielinski regarding a massage oil for diabetics with neuropathy. It included a few oils, like geranium, that I read elsewhere to be helpful, so I whipped up a batch. Neuropathy is neuropathy regardless of the cause, right? If you’re interested, here is the recipe. I mixed those oils with a lotion rather than a carrier oil, but you could do whichever flips your switch.

Final Thoughts

The problem with neuropathy is that it might go away, or it might not. Only time will tell. But studies show that getting a jumpstart on it with occupational or physical therapy will help decrease any lasting side effects.

There’s no guarantee that vitamin B complex or acupuncture will prevent neuropathy. And there’s no guarantee occupational or physical therapy will correct the problem. But I absolutely encourage all of these treatments! The frustration of my minor neuropathy was bad enough.

I’m also happy to report that my hands, tongue, and legs are essentially back to feeling normal. My tongue sometimes still feels thick, but it doesn’t interfere with my eating or speaking like it used to. I’m back to typing and writing normally, and my legs aren’t ready to give up on me after just five minutes of walking (I just walked 5k yesterday, as proof).

I hope these tidbits helped you! Please let me know in the comments if you found anything else to be helpful!

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