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Managing neuropathy and cold sensitivity

Almost all patients taking chemotherapy containing oxaliplatin develop acute cold sensitivity during or after infusion. Some people also experience peripheral neuropathy after taking oxaliplatin for a long time.

So what’s the difference — and how can you prevent them?

What is cold sensitivity?

Cold sensitivity is when you feel pins and needles, pain, and numbness while handling cold objects. It can also cause a ground-glass feeling in your throat while drinking cold liquids.

Cold sensitivity comes on rapidly — it can start as early as during your first oxaliplatin infusion. Similarly, cold sensitivity symptoms are temporary, and will likely improve after you stop taking oxaliplatin. 

What is neuropathy?

Neuropathy is a type of nerve damage that affects the hands and feet.

Here are some main characteristics of neuropathy:

  • Sharp pains, numbness, tingling, and pins and needles in your hands, forearms, lower legs and feet
  • Can cause weakness, making it difficult to use your hands
  • May cause difficulty with walking and balance

Most of the time, neuropathy starts later in treatment (after 6 or more cycles of oxaliplatin). Stopping treatment won’t always stop neuropathy. It can worsen for 6 months after treatment, and last several months after you stop taking oxaliplatin. 

Nerves take a very long time to heal. Here’s a rule of thumb: If you had 6 months of treatment with oxaliplatin, it may take 12 months for the nerves to heal. Sometimes nerves never fully heal. 

So what’s the difference between cold sensitivity and neuropathy?

You may experience temporary cold sensitivity after every oxaliplatin infusion — but the symptoms of neuropathy usually begin after several infusions and worsen as you continue treatment. Neuropathy can become permanent.

What can I do to prevent cold sensitivity?

Cold sensitivity can be reduced — or prevented altogether — with something called icing. Exposing your hands, feet and mouth to very cold temperatures during infusion can temporarily shrink your blood vessels (called vasoconstriction).

This reduces blood flow to the area. Because oxaliplatin doses are delivered directly into your veins, this vasoconstriction is thought to reduce the amount of oxaliplatin that reaches your hands, feet, and mouth.

You can dunk your hands and feet in ice water, hold a frozen bottle of water, or purchase cold cyrogloves or socks. You can also suck on pieces of ice or sip on ice cold drinks during your oxaliplatin infusion.

Icing is not a very comfortable thing to do, but it can reduce your chances of developing acute cold sensitivity. This allows you to enjoy cold drinks and food, and handle cold things without feeling any discomfort! This can greatly improve your life while on chemotherapy.

Want to learn more about icing? Check out this video:

Does icing affect neuropathy?

Icing is unlikely to affect peripheral neuropathy directly. Icing while on oxaliplatin can help you tolerate more cycles of oxaliplatin — but this can have negative effects when it comes to neuropathy. Having more than 8 cycles of oxaliplatin increases your chances of long term neuropathy, whether or not you reduce cold sensitivity with icing. Many patients develop neuropathy long after oxaliplatin is stopped, and may be surprised that they have it despite regular icing!

What can I do to prevent neuropathy?

The number one thing you can do to lower risk of neuropathy is reducing exposure to oxaliplatin. It’s important to make sure your chemotherapy doses and duration are right for your circumstances.

Recent research from the IDEA trial shows that fewer and fewer people are receiving 12 cycles of FOLFOX or 8 cycles of CAPOX. If you are an early stage patient scheduled to get more than three months of chemotherapy that includes oxaliplatin, it’s a good idea to get a second opinion to make sure the longer chemo regimen is necessary.

Even for stage IV patients, many oncologists stop oxaliplatin containing chemo after 8 cycles, and switch to a different regimen without oxaliplatin.

Make sure to promptly talk to your oncologist and healthcare team about any symptoms you experience.

If I already have neuropathy, how can I make it better?

There are some other things that may help with existing peripheral neuropathy. Neuropathy from oxaliplatin is being studied in clinical trials — but so far, we don’t have any medications or treatments that are proven to be effective.

However, some of the strategies below may provide some relief. Please talk to your care team to find out if these options may work for you. Make sure to follow instructions from your team carefully!

Here are some things that may help:

Exercise

If you routinely work out, continue to do so. Exercise is the best physical therapy you can do! Walking daily is an excellent way to increase motion and blood flow to your hands and feet. 

Improve your balance

Neuropathy can cause sensory and motor changes that affect the ability to tell where are feet are in space (called proprioception). This decreases as neuropathy advances, so we trip and fall.

So how can you improve your balance?

  • Try strength training. No way around this: the only way to improve your balance is to increase muscle strength. See a physical therapist to help give you exercises tailored specifically for you.
  • Try bracing and assisted devices. More on this below!
Yoga

Yoga is an excellent source of stress relief — and this can reduce nerve pain! Yoga may help stretch muscles, and help “massage” your nerves and blood vessels. It can also help with proprioception. Check out YouTube for some videos that can help you practice yoga at home, if you’re unable to attend a class

TENS or EMS units

Transcutaneous electrical nerve stimulation (TENS) and electrical muscle stimulation (EMS) machines stimulate your muscles to strengthen them. These can be purchased online or in some local pharmacies.

TENS patches are applied over nerves to stimulate them. It’s used mostly for relieving chronic and acute pain.

EMS units cause muscles to contract. These patches are applied over the muscles. It’s used mostly for muscle strengthening and preventing muscle atrophy.

So which one is better for neuropathy? 

If you only have nerve pain and tingling from neuropathy, then TENS is the way to go. Several studies in the past 5 years show that electrical stimulation does help regenerate nerves after injury. Many physical therapists use TENS units at larger cancer centers.

If you are experiencing nerve pain and have lost some muscle mass, look at a combination TENS/EMS unit. It can be expensive, but you get the benefit of both.

Please check with your healthcare team before starting TENS or EMS. Don’t use TENS or EMS if you’re pregnant. Don’t place patches over active cancer, or over an area with a blood clot.

Sensory bins

Stimulating nerves in different ways can be helpful to reduce pain. Fill a bin with things that are interesting to touch. It can help you improve dexterity and function.

Deep massage

Massage can be used to desensitize your nerves — as overstimulation can actually help reduce pain. Use lotion, and rub your feet and hands slightly more aggressively than you normally would. This can be done for five to ten minutes several times a day.

Note that this often increases nerve pain when you start, but after several weeks of daily practice, it can really make a difference. You can also use Biofreeze or IcyHot.

Acupuncture and reflexology

When it comes to acupuncture and reflexology, not everyone agrees on whether they work for neuropathy or not. Both options have anecdotally offered patients some relief. If you’re interested, only see those trained in acupuncture or refloxology. If you don’t see results, see if a different practicioner or technique might work better for you.

Don’t do acupuncture if your platelets or neutrophils are low.

Anodyne phototherapy

This is a type of non-invasive infrared light therapy. You can buy a unit, or ask if your physical therapist or home health nurse has one. Low leve infrared light, at a wavelength between 800 and 1200 nanometers works. The longer the wavelength, the further the light penetrates into tissue. Because nerves are close to the skin, 880 nm seems to be the most effective.

Infrared light causes a release of nitric oxide — which can increase blood flow and oxygen to your tissues. This may help heal the nerves.

Place the pad over the area that feels numb or hurts. Use it for 30 minutes once or twice a day. Pain relief is temporary for some people, and you might need to use it daily to continue to feel relief.

It doesn’t hurt, but you may feel a warm sensation on your skin. There is a slight risk of superficial burn, like a sunburn.

Please speak to your healthcare team before starting anodyne phytotherapy to make sure it’s right for you. Don’t use this therapy if you have muscle pain or spasms, wounds, poor circulation, or some skin conditions. 

Also, don’t place this device over an area with an active tumor. The device increases blood flow, which we do not want to do for cancer! If you’re using it on your hands, place them as far away as possible from your abdomen, lungs, or any other area you have metastases.

Appropriate footwear

Wearing the right footwear can help your nerve pain. First of all, it’s important to know what kind of feet you have.

Flat feet put pressure on the tarsal nerve that runs along the inside of the ankle and foot. People with flat feed need a firm shoe base that doesn’t bend very much, and a supportive insert. Look for “stability” shoes. Soft shoes and gel inserts can increase friction and nerve pain. 

Feet with high arches have trouble absorbing shock, which puts considerable stress on the ball of the foot and toes. People with high arch feet need a more cushioned base. Inserts may or may not be helpful — choose whatever is comfortable for you. 

Shoes are good for you. The more you wear them, the more reduction you’ll see in your neuropathy. Don’t go barefoot around the house. Wear something with support. Avoid gel inserts, they may make your nerve pain worse.

Socks make a difference too. Look into socks made of cotton and wool or cotton and acrylic blends. This will help wick away moisture and prevent friction. Fully cotton socks might trap moisture, and fully wool socks are abrasive. This can cause friction, worsening neuropathy pain.

Moisturize

Keep hands and feet well moisturized. The drier your skin, the more irritated it will be — thus increasing nerve pain. Plus, the act of putting on lotion can be a desensitizing massage

Braces and assistive devices

Need help walking while you’re working on your strength? It’s ok to use devices that help you maintain your balance and independence.

Here are some devices that might be useful:

  • Cane or walking stick. These give your brain a stability point to trust. If you have neuropathy in your hands, a taller walking stick may be more useful, because it’s a visual point of trust as well
  • Ankle brace. The stiffness from a basic lace up brace can prevent the ankle from rolling
  • Ankle foot orthosis. This goes higher up the leg, and is much more stiff than an ankle brace. It also gently causes your toes to pop up off the ground — making it less likely you’ll catch them on something
  • Knee brace. If you have low strength in your thigh muscles, knee braces can help your knees from buckling
  • Back brace. If you have poor posture, you may hunch forward. This puts your center of gravity over your toes — which can cause you to trip or fall

Want to learn more about cold sensitivity and neuropathy?

Join one of our COLONTOWN Facebook groups:

  • Check out Live Wire to learn about icing strategies and ways to manage neuropathy

Want to join? Fill out the registration form here.