Myeloma 101: What Is Neuropathy And How To Live With It?

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BY LIZZY SMITH

Peripheral neuropathy is a common side effect from the myeloma drug bortezomib, and is often one of the most debilitating. Symptoms are usually seen almost immediately when beginning treatment, sometimes within the first few cycles, or when a cumulative dose is reached. Because I have been on near continuous bortezomib therapy for the past three years, I struggle with neuropathy. I don’t have pain, but in my left foot, I have almost no feeling. I can feel pressure, but that’s about it. In my right foot, I have about fifty percent feeling. At night, the numbness can at times be uncomfortable. I also feel quite a bit of weakness in my left leg, which is quite a switch from my pre-myeloma body when I was a runner and had very strong legs.

So let’s talk about neuropathy, what is it, and what to do about it.

What is peripheral neuropathy?

Peripheral neuropathy is damage to nerves of the peripheral nervous system. It causes pain, numbness, tingling, burning, and weakness, typically in hands and feet. Additionally, motor skills can be affected with mild to severe weakness in the lower extremities.

For me, I can still do pretty much everything I want to, but I am aware that I am not as physically strong or as coordinated as I once was. Case in point– several months ago, I went on a power walk in my neighborhood. I simply don’t lift my feet up as much as I used to. It’s a subtle change in my walking gait and I don’t even think about it. But on this walk, I tripped over an uneven sidewalk and slammed my face into the pavement. I have a permanent bruise on my cheekbone. It wasn’t the end of the world and I don’t mind some wounds from getting out and doing fun things (it gives me a great story to tell and I appear less boring than I am!), but nonetheless, I need to be well aware of my limitations and be extra cautious. I often go snow skiing with my daughters but I am very careful, I go on easier runs than I used to, and I really avoid falling. My ski boots don’t feel that “great” on my feat but keeping them extra warm, wearing good cushioned socks, and staying hydrated helps immensely.

Some patients have such intense pain that nothing helps but pain killers and a walker. If you have these symptoms, talk with your doctor about your options for relief.

Is neuropathy permanent?

For those discontinuing bortezomib, neuropathy often resolves itself within three months, though it can take longer. Since I’m staying on the drug for the foreseeable future, I don’t anticipate mine going away any time soon. Instead, I need to learn to live with it.

What can be done to prevent neuropathy?

While there are no ways to stop neuropathy from happening, getting proper sleep, managing stress, eating healthy foods, staying hydrated, and exercising helps. For me, the worse thing I can do is be sedentary. Stimulating my feet helps a lot, as does getting around and moving. I never walk around barefoot, though, not even in the house. One day, I noticed my foot was bleeding. I had no idea how (or when) that happened. So always having something on my feet is really important. For example, I always have fuzzy socks or slippers on at home. Good cushioned shoes help, too, though I must admit that I live in flip-flops and sandals over the summer. As long as I’m not barefoot, my feet seem relatively happy. Last summer, I broke my rule when we were in Sirmione, Italy. The lake looked so beautiful and it was so hot outside that I had to get in. I took my sandals off and started walking on the beach. The tiny rocks felt like needles and I almost passed out from the pain. Thank goodness my daughter was nearby and she rushed my shoes back to me. I couldn’t get them on fast enough. Never again! I purchased some water shoes for our upcoming trip to the Honduras in Belize because even in the ocean, I need foot protection. It might not look as cute but who cares? Comfort first!

I also have my fiancé rub my feet and I love getting pedis simply because it helps stimulate my nerves. This helps diminish the intense numbness I experience, especially at night. I absolutely love peppermint essential oil for its nerve-stimulating effects (plus it smells dreamy). I put about a tablespoon of fractionated coconut oil in my palm, add maybe six drops of peppermint oil and rub it on my feet and calves. Oh my gosh, it is amazing.

foot ball rollers

I also have a “foot ball” that I usually use at night. The night numbness is so much more livable when I use this routine.

I am a huge fan of yoga. For me, it’s 90-minutes of Bikram yoga in a 105-degree temperature room. It is very stimulating for my entire body, numb feet and calves included. I walk, hike, ski and most everything else I like to do. True, not everyone can do this. For some, the pain is too intense and if this is you, make sure you discuss this with your doctor. Perhaps physical therapy is also an option.

Besides stopping bortezomib, are there other options?

I have read that the weekly administration of subcutaneous bortezomib, rather than the standard twice per week treatment schedules, helps with neuropathy’s frequency and neurotoxicity. Discuss with your doctor about perhaps reducing your dose if your side effects are too painful may be an option too.

What about medications for peripheral neuropathy?

There are topical gels that can help, though you’ll ne need a prescription for some. Topical menthol can also be effective. Pain killers can be used for intense pain. Additionally, there are prescription medications for managing the symptoms of neuropathy. Discuss them with your doctor.

For more information:

Medifocus Guidebook on Peripheral Neuropathy

OncoTherapy Network’s Managing Bortezomib-Induced Neuropathy

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About Author

Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. “To the extent I’m able, I want to prove that despite life’s biggest challenges, it is possible to survive and come out stronger than ever,” she says.

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