But what I came here to post is a letter a friend (I will call her Person A) asked me to write for her best friend (I will call her Person B) who is suffering neuropathy after her recent treatment for cancer of her appendix. Yes, people can get cancer in a vestigial organ that none of us need. That has got to be the worst place to be, especially when the treatment for that cancer, as it has for Person B, completely disrupts life by putting the person onto disability and causing lack of function and pain from the neuropathy.
This is what I wrote. Please feel free to share it with anyone you know suffering from chemo-induced neuropathy.
*************************************
Neuropathy Discussion for Person A's Friend, Person B
Hi Person B,
I am Venita, a nine-year survivor of invasive breast cancers
diagnosed when I was 54 years old. Among my treatments were eleven surgeries
including two mastectomies, seven dense doses of three different chemotherapy agents,
and thirty radiation sessions.
Person A explained briefly to me your situation, your neuropathy
symptoms, and your concern whether the neuropathy will abate and
how to treat it so it is tolerable.
I have read and was told by my two
oncologists that for most patients chemo-induced neuropathy does resolve. That
is supported by the CancerCare brochure on neuropathy at http://media.cancercare.org/publications/original/10-ccc_neuropathy.pdf.
My first oncologist told me it could take six to twelve months for the
neuropathy to resolve. Person A told me you finished chemo a couple months ago. Therefore,
I think it’s reasonable for you to regain normal function and sensation in your
extremities. Please don’t give up that hope. I also think that certain actions
you take to ease your symptoms can help to resolve or alleviate the neuropathy.
**************************************************
I am the Queen of Neuropathy. I have talked
about it with my cancer support group, demonstrating four shopping bags of
meds/devices that I have tried for my symptoms.
History—I started experiencing chemo-induced
neuropathy in my feet and hands after my second infusion of docetaxel. I had
one more infusion after that, but when I showed up for my fourth and final infusion
in tears and describing my symptoms, my oncologist agreed that I was finished
with chemo.
Sadly for me, my chemo-induced neuropathy
didn’t resolve and is progressive. This is how my chemo-induced
neuropathy presents—
·
Diminished feeling and weakness in my fingers
and hands.
·
Both diminished feeling and hypersensitivity in
my toes and feet, and pain that grows during the day from a dull ache to
shooting and throbbing electrical sensations.
·
Cramping in the arches of my feet and in my
calves. This usually happens overnight, waking me from sleep.
·
Shooting electrical sensations in the tops of my
toes and feet and in my calves, causing pain and often causing involuntarily
jerking of my legs.
·
Lack of coordination in my hands and feet/legs,
causing me to spill/drop things, an unsteady gait when walking, and a lack of
balance when walking/standing. I did once fall, resulting in a trip to the ER
and more than a dozen staples in my head. I have to be careful when standing
from a sitting position, and I will seldom go onto a step-stool without someone
to “spot” me.
·
A general grumpy/bitchy mood from chronic pain
and frustration with my diminished physical abilities.
In my 9+ years of living with neuropathy, these are some of
the things I have done to improve/tolerate the condition—
·
Physical therapy (twice) to improve balance and
reduce cramping, working with a PT practice that specializes in chemo-induced neuropathy.
My insurance covered the cost.
·
Yoga/meditation to try to find inner peace and
improve mobility. My local cancer support center offers those programs
free-of-charge.
·
Reading
and trying to apply the guidance I found in a couple books written by John
Senneff – Numb Toes and Aching Soles
and Numb Toes and Other Woes. I
bought them from Amazon after reviewing copies from my local library.
·
Acupuncture. When I first started all of this, I
had no flexibility in my feet. I was walking flat footed with toe drop. The
acupuncture broke the bond my toes had with the ball of each foot (this may or
may not make sense to you, depending on your symptoms). I returned to
acupuncture a couple years later for the pain, but that didn’t work. Acupuncture
is not covered by insurance, so it is a “luxury.” I asked and my practitioner
gave me a disability discount.
·
Various physical devices to keep my toes separated/flexible
and reduce pain/cramping. Flexible toes are what keep your balance when you stand
or walk. When I am experiencing evening pain, I will use one of these devices
for thirty to sixty minutes and get a couple hours of pain relief—
o
Yoga Toes, my favorite (http://www.yogapro.com/products/YogaToes.html).
They can be difficult to put on, but they are made of a rubber product and I
coat them with Vaseline to slip the separators between my toes. You can use
them in a hot tub or foot bath.
o
Very soft cotton sock-type things that do the
same thing as Yoga Toes to separate the toes. These aren’t the toe socks that
fit around your toes like gloves fit around fingers. They have a separator
between toes and leave your toes naked. I often wear these to bed.
o
An electric red-light heat vibrating device. It
is difficult to use, though, because I have to hold it against the bottom of my
feet. It doesn’t fit flat on the floor although there are some that do.
o
Vibram five finger shoes, although I seldom wear
them because they are difficult and sometimes painful to put on and take off. http://barefootrunningshoes.org/vibram-fivefingers/.
They are pricey. If you want to try them, I suggest you get a slightly larger
size so you can get them on/off easier.
o
I have had people recommend a TENS unit. A friend
sent one to me but I haven’t hooked it up yet.
·
Topical relief for toes/feet—
o
Microfiber-bottomed slippers. http://www.amazon.com/Slipper-Genie-Microfiber-Cleaning-Slippers/dp/B000R9B3L4.
I wear these constantly in the house. They cushion the bottom of the feet.
Don’t buy a “generic” brand; they suck.
o
Warm- or ice-water foot baths. Whether you go
warm or cold depends on your sensation at the time. I have a
vibrating/recirculating foot bath machine, but I do just as well with a dish
pail with the water to the temperature I want. When I go warm-water dish pail,
I will use Epsom salts. The salts can bring quite a bit of relief from pain.
o
BenGay-type products to rub onto the feet. I
have tried various products and I like BioFreeze the best. In a pinch I will
use Vicks Vaporub.
o
I had a friend with diabetic neuropathy
recommend Magnesium oil and Methylcobaline B12, but I haven’t tried them yet.
o
Sometimes you just want to keep your feet warm
or cold. I have a wheat pad, buckwheat slippers, insulated slippers, and
electric heating pads. Sometime I find that if I am cold, wearing a stocking
cap will warm up my whole body, including my feet.
·
Positioning your feet. I sometimes need my feet
up and I sometimes need them down. If I have been vertical for most of the day,
I need to sit in a recliner and have my feet up. But after a few hours in the
recliner, I feel like I need better circulation in my feet so I have to put the
footrest of the recliner down or get up and walk around a bit.
·
Exercise. I know it can hurt to walk or stand,
but those are helpful to sensation. MODERATION IS THE KEY. I am fearful of a
treadmill because of the fall risk. I did take a couple years of water exercise
at my local YMCA. I took the class for people with MS because we had similar
disabilities. Got good exercise; built strength and flexibility. The Y gave me a
disability discount.
·
Travel. Person A told me you can’t drive, but she
didn’t explain why. I can no longer drive more than three hours at a time.
Otherwise I am in bed for the next day or two because of the foot pain. I have
come to know my limitations, respect them, and ask others to respect them. I
took a flight to/from Arkansas
a few months back. I requested wheelchair assistance to my gates. That helped a
lot, but after twelve to fourteen hours of door-to-door travel, I still ended
up in bed for a few days. Know and respect your limitations.
·
Medications. Person A tells me you don’t want to be
addicted to pain meds. I understand that. I worked with a physiatrist (a pain
management specialist) at my cancer center. There are various meds, as
discussed in the CancerCare brochure, which might relieve neurologic symptoms.
My doctor and I tried antidepressants and anticonvulsants. They did not
significantly reduce my pain or other symptoms; she said my nerves were “shot.”
The physiatrist and I finally found that Oxycodone (an opiate) reduced my pain,
and she sent me back to my general practitioner for pain management. Sadly, my
GP got freaked out by the state and federal investigations into the
over-prescribing of opiates and refused to continue to prescribe for me. So for
3+ years I have gone without pain management. I did not become addicted to pain
management meds. I am still working on using the last of the 50 Oxys that were
prescribed for me in 2011. My oncologist prescribed Methadone for me in 2013 as
a pain management alternative, but when I read how addictive that could be, I
tossed those pills.
·
Tools and attention to movements. I keep tools
nearby so that I can manipulate things with my hands. For example, I keep a
pair of pliers in a kitchen drawer so that I can take the screw-off lid off a
liter of soda. I always look where I am reaching. I can no longer “know” that a
glass of liquid is fourteen inches away at my 4 o’clock and reach back for it.
I have to look where my hand is going to pick it up without spilling it. I have
to be attentive to how I walk to keep from stumbling and to keep my balance,
especially on stairs.
I could suggest other things, but what I have written likely
will overwhelm you. So I will go back to the beginning of this tome. There is a
very good chance that your neuropathy will resolve in six to twelve months
after chemo, so please hold onto that hope.
~Venita
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