Not long before Tom Petty died, Dear Hubby and I attended one of his concerts, which sadly, also turned out to be one of his last. He died shortly thereafter. Dear Hubby’s a big fan, and we were visiting Dear Daughter and Dear Son-in-law in California and decided what the heck. Let’s go see Tom Petty.
What does Tom Petty have to do with chemo-induced peripheral neuropathy?
Let me explain…
During that concert, I suffered. Not because I’m not a fan, but because I had a significant flareup of chemo-induced peripheral neuropathy (CIPN) symptoms in my feet likely brought on by standing for far too long. (It was an outdoor, standing only concert.) I was miserable, but somehow, I managed to get through it.
That was by far the worst flareup I’ve ever had.
I have a mild case of CIPN, and it is no fun even with a mild case. “Luckily,” mine is only in my feet, primarily the balls of my feet.
Let’s just say, I have tremendous empathy for those who deal with CIPN, no matter what the cause.
If part of your cancer treatment involves chemotherapy, more than likely before you begin your regimen, you will be handed a sheet of paper outlining potential side effects to expect with your particular drugs. I call it, “The You’re f***** List.”
The aforementioned list can be quite long and daunting, yet if you’re like me, I was primarily worried about losing my hair and feeling sick. Yep. Hair loss and puking. It’s a little embarrassing to admit I worried quite a lot about those two side effects. The other ones, not so much.
It’s important to note, not all chemotherapy results in hair loss. Hair loss is not something upon which to judge how a person is feeling or how sick she/he is.
This post addresses a less commonly worried about, expected and discussed side effect — chemo-induced peripheral neuropathy. Yeah, it’s a mouthful alright.
Some might think (and say) why write a blog post about this topic? Anyone can just Google it.
Very true. After my cancer diagnosis, I Googled a lot. Still do when I get the urge. However, reading about lived experiences shared by real people, real cancer patients, adds another layer of valuable information. Hence, this post.
Note: While I always strive to share accurate information, this blog is never meant to replace medical advice. I share about my experience with CIPN and sprinkled in a few other patients’ experiences as well because we can learn so much from one another.
What is chemo-induced peripheral neuropathy (CIPN)?
Chemo-induced peripheral neuropathy is the focus of this post, but radiation, diabetes, surgery, thyroid issues, nutrition deficiencies, a family history of neuropathy, advanced cancer and other factors can place you at higher risk for developing neuropathy too.
First, it’s important to know that your nervous system has two parts as succinctly explained on Cancer.Net:
The central nervous system is made up of your brain and spinal cord, a thick cord of nerves inside your spine. The peripheral nervous system is made up of all your other nerves. They send information between your brain and your body.
Damage to nerves not part of your central nervous system is called peripheral neuropathy.
Which chemotherapy drugs most commonly cause peripheral neuropathy?
It’s super important to know before starting chemo what drugs you’ll be on and if any do indeed increase your risk of developing CIPN.
So be sure to ask about both.
You might want to read, Are the Long-Term Side Effects of Chemotherapy & Other Cancer Treatments Underdiscussed?
To ensure accuracy, I’m sharing the following information directly from American Cancer Society:
Certain chemo drugs are more likely to cause CIPN. Some of the more common ones include:
– Platinum drugs like cisplatin, carboplatin, and oxaliplatin
– Taxanes, including paclitaxel (Taxol®), docetaxel (Taxotere®), and cabazitaxel (Jevtana®)
– Plant alkaloids, such as vinblastine, vincristine, vinorelbine, and etoposide (VP-16)
– Immunomodulating drugs (IMiDs), like thalidomide (Thalomid®), lenalidomide (Revlimid®), and pomalidomide (Pomalyst®)
– Proteasome inhibitors, such as bortezomib (Velcade®), carfilzomib (Kyprolis®), and ixazomib (Ninlaro)
What are the symptoms of CIPN?
My CIPN symptoms appeared following my Taxol® treatment. Honestly, I don’t recall if symptoms were beginning to appear during said treatment. Like I said, I wasn’t focused on this particular side effect. I suspect I would’ve noticed though.
My symptoms were/are a tingling sensation in the balls of my feet. I pretty much have this sensation all the time, 24/7. Thankfully, my hands/fingers are not affected.
I describe my CIPN as feeling like the sensation you get when your foot “goes to sleep” after you’ve been sitting on it for awhile, but a lighter version. That’s something most of us have experienced, and it’s the best way I’ve come up with to describe what CIPN feels like for me.
During a flareup, the tingling intensifies and pairs up with pain and numbness (yeah, it’s weird how you can experience pain and numbness at the same time). Again, that is my experience.
American Cancer Society lists the following as symptoms of CIPN:
- Tingling (or a “pins and needles” feeling)
- Burning or warm feeling
- Discomfort or pain
- Less ability to feel hot and cold
- Cramps (in your feet)
Other (there are likely many more) reported symptoms include:
- Sensitivity to touch and/or temperature
- Trouble with balance
- Sexual dysfunction
- Loss of reflexes
- trouble swallowing
Julia (@welliesnseaweed) shared the following about her CIPN symptoms:
I developed neuropathy during chemotherapy in my fingers and toes, but I also seemed really clumsy… and fell a few times and walked into things… My fingers were so bad I couldn’t use buttons. I had to be careful. I burned them once because it took me longer to realize that the oven tray I was picking up was hot. I also had numb toes and numbness under my foot… Once when I stood on a thorn, I didn’t notice until it was deep. I also didn’t notice when I developed ingrown-toenail infections (wonky nails were another consequence of chemo).
Be sure to visit Julia’s blog, WelliesandSeaweed.
Sometimes symptoms are mild, and sometimes they become severe enough to inhibit the ability to do basic self-care tasks, walk, write, cook, pick things up and countless other things.
In addition to inhibiting ability to perform daily tasks, CIPN can impact a person’s job/career.
Dr. Kelly Shanahan (@stage4kelly) had this to say about the impact on her career:
I developed permanent neuropathy after being on taxanes for 9 months after my metastatic breast cancer diagnosis. It cost me my career as an ob/gyn — it’s hard to do surgery when one’s fingers are numb, and I was worried I wouldn’t be able to feel something like a breast lump. I am lucky, however, because my neuropathy is only numbness, rather than painful pins and needles.
Beverly (@BZavaletaMD) shared about her symptoms and the impact CIPN has had on her life and career:
My symptoms began with a numb sensation in the left great toe during my fifth month of chemotherapy. It felt like a cotton ball had been stuffed into the tip of my toe. The numbness progressed quickly up both feet and after two weeks, my feet and lower legs were numb and heavy. Over the next month, the symptoms progressed to include shooting pains and hypersensitivity. Slight touch, such as walking barefoot on tile felt distorted and painful, as if I were walking on sharp sticks or nails. Eventually, I also had leg weakness, balance problems and numbness and weakness in my fingers.
My return to work was delayed by four or five months over what I had planned. Now, I work nearly full-time, but my stamina is reduced. The list of what I can no longer do is long. Other than premature menopause, CIPN is the side effect that has most impacted my life.
Accommodations are common for millions of people with disabilities and my story is in no way unique. CIPN is an “invisible disability” and thus, not recognized by the public at large — often not even by physicians.
In severe cases, more serious problems can arise such as: changes in heart rate and blood pressure, dangerous falls and even paralysis.
Megan (@warriormegsie) had this to say about the risk/impact of dangerous falls:
I’ve had continuous falls due to no feeling from the balls of my feet to my toes and am currently sporting a grade 3 sprained ankle from the latest fall. It has affected my quality of life because I can’t walk long distances and have a handicap sign. It makes dancing, exercising, and living alone a challenge due to fall risk.
Be sure to visit Megan’s wonderful blog, Life on the Cancer Train.
It’s worth noting that CIPN symptoms can be in a state of flux, as illustrated by my Tom Petty story. Certain things or conditions aggravate it. This might be things like weather/temperature changes, standing for too long, wearing shoes that are too tight, lack of movement, poor circulation and many other things.
One common thread I heard from Twitter Cancer Havers was that their symptoms in their feet often worsened at night.
Can CIPN be prevented?
Unfortunately, according to recent ASCO guidelines, no.
You’ve probably heard that cryotherapy, meaning cold therapy, is sometimes recommended as a way to reduce CIPN risk. Wearing frozen gloves and socks for a specified amount of time during chemo infusions is one example. The benefit of cryotherapy is still being studied. There can be risks here, too, so be aware of that. Read more about it here.
Cryotherapy is also sometimes used to prevent nail toxicity (from chemo) and, of course, scalp cooling is becoming more and more common place to prevent hair loss.
(Gosh, we sure as heck need less
barbaric harsh treatments, right?)
Some people swear by this method to reduce risk. As always, it’s best to discuss this with your doctor prior to beginning treatment.
If you’ve utilized cryotherapy during chemotherapy, share your experience in the comments, if you’d like.
It’s worth noting that not all chemo drugs are delivered via an infusion. Some patients receive it in pill form.
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Tips to help manage CIPN
1. Standard management tips to try:
Generally, these include: occupational or physical therapy, pain relievers, proper rest and nutrition, exercise and complimentary medical techniques such as acupuncture and massage therapy. Sometimes topical lotions are recommended.
Pain patches and medications such as gabapentin ( Neurontin), pregabalin (Lyrica), duloxetine (Cymbalta) and others are sometimes prescribed.
2. Modifying your environment might be necessary.
- You might need to do things like decrease clutter, remove area rugs, use extra caution when showering/bathing to avoid falls and hot water burns and be extra careful when using sharp objects.
- Caution might also be necessary when cooking or doing anything involving hot surfaces and/or objects.
- Additional accommodations such as the use of a cane or walking stick when walking on uneven or unfamiliar surfaces might be needed.
- Since each person’s symptoms and situation are unique, you have to figure out what accommodations you need in order to make your daily life safer.
(I know, I know. Cancer can be such a dignity robber.)
3. Proper footwear is essential.
Comfort and safety must come first, along with proper fit, as footwear that’s too tight can cause flareups.
Keeping your feet and fingers warm and dry especially during winter months is also important.
4. Never suffer in silence or hesitate to report something that doesn’t feel right to you or causes you concern, discomfort or pain.
As I’ve said many times, you don’t have to be stoic. CIPN is a huge deal. Sometimes dosage can be reduced to prevent further nerve damage, so be sure to report symptoms right away.
Steve (@EnvRhet) had this to say about that:
Newly diagnosed patients need to talk with their doctors upfront. Mine said wait until it affects daily activity. Too long!
As always, self-advocating is so important. Don’t be put off.
5. Seek help from a palliative care or pain specialist.
Noel (@AdvocateRoma) offered this advice:
The best treatment I’ve found is gabapentin at night because it makes me drowsy — I’ve tried many meds! Recently a weighted blanket and compression stockings have really helped with pain. Palliative care has been so valuable in treatment.
Any cancer patient, regardless of type or stage, is entitled to palliative care, but often there isn’t access due to various reasons. But do ask about this option. If you have access to a pain specialist, that’s another professional to turn to.
6. Figure out some sort of exercise/movement routine you can stick with.
I was told it would get better when I was off chemotherapy. It hasn’t. In fact, CIPN seems to have had a cumulative effect, but I try to carry on exercising and walking as I feel it does help to keep the circulation going.
You might consider (when we get beyond this pandemic) taking a Livestrong class. They are free. I did this a while back, and it was a good experience.
Even better would be a program specifically geared to individuals dealing with CIPN. I have a feeling these are few and far between though. (Anyone been part of one?)
You might want to read, Do You Hate to Exercise? 14 Tips to Help Motivate.
7. Get Support. Whatever long-term side effect(s) from cancer treatment you might be dealing with, including CIPN, you’re not alone.
In addition to your medical team, there are online and in-person support groups specifically for people dealing with peripheral neuropathy, so keep looking for the support you need and deserve.
Cancer treatment is a tough thing to slog through. And as if treatment’s not hard enough, sometimes it leaves ongoing long-term side effects like CIPN. To say we need better, less harsh treatments is an understatement.
Cece (@ccandmepod), a PhD candidate studying cell division while also dealing with CIPN, is working on bringing less harsh treatments to patients:
I started my thesis project a year before I was diagnosed (stage II Hodgkin Lymphoma), so suddenly being affected by the exact drugs that my research is trying to replace was very humbling. I feel that researchers who are embedded in the minute details of cancer don’t often take a moment to step back and consider the larger context of their work.
Experiencing CIPN myself and learning that the only sure way to prevent it is to not use the chemo drugs that cause it, has reinforced the importance of my research. The eventual goal is to replace vinblastine/vincristine/taxol with agents that are equally effective, but don’t cause CIPN.
That’s a good goal. A very good goal indeed.
Finally, if you are dealing with CIPN (or any long-term side effect), have the necessary conversations with your care team. Don’t settle. As always, you deserve validation and guidance for how to best manage symptoms that impact your QOL.
CIPN might be an invisible disability, but YOU should never be made to feel invisible.
Sources used for this post:
Twitter friends (Thank you!)
If you like this post, why not share it?
If you deal with peripheral neuropathy, what are your symptoms, when did they first appear and were you warned about risk before beginning cancer treatment?
If applicable, are you receiving the support you need to deal with CIPN?
Do you have a tip to share?