The major side effect from my chemo drug (capecitabine / Xeloda) was Hand Foot Syndrome (HFS), known by doctors as Plantar Palmar Erythrodysesthesia (PPE). This happens when the chemo drug leaks from capillaries in the hands and feet, damaging cells and leading to swelling, peeling, sensitivity, and even pain.

There is a really useful publication from BC Cancer about capecitabine with some recommendations for HFS/PPE.

The sensitivity makes some daily activities difficult, like buttoning shirts and opening jars. Here are some of the accommodations I figured out over 6+ months of chemotherapy.

But first, a photo of my affected hand with our four month old granddaughter.

I will not include a photo of my inflamed toes. None of us need to remember that.

General

Derm consult. Get a referral to a dermatologist. Though this is a chemotherapy side-effect, it is a skin problem. Dermatologists know what to do about that. Including steroid injections into my big toes. Not fun, but we do what we need to do.

OT consult. I didn’t talk to an occupational therapist, but I have an in-house resource. My son is a pediatric OT. OTs know accommodations and modifications cold and have all the resources.

Podiatrist consult. If you have problems with your toes and toenails (I did), go see a podiatrist. They’ll fix you right up.

Lanolin-based hand creams. There are so many hand lotions. BC Cancer recommended creams with lanolin. I used Udderly Smooth most of the time, along with Lanolips for more care. Lanolips feels like it has more lanolin. It has a nice rose scent, probably to cover up the sheep smell.

Hands

Shirt buttons. I’m old school and wear button-up shirts every day. When my hands were bad, buttoning them was hard, so I got some snap-front shirts. My choice was the Wrangler Long Sleeve Chambray Work Shirt because they come in 2XL Tall and aren’t expensive.

Nitrile gloves. When my hands were peeling, I’d occasionally use nitrile gloves to get an extra protective layer. Didn’t do it a lot, but have some on hand.

Dishwashing / hot water. Dang, hot water hurt, and dishwashing soap was not helpful. Get some of those long yellow Playtex dishwashing gloves. They provide just enough insulation against the hot water. I learned to douse my hands with cold water if water was too hot.

Shoelaces. Pulling on thin cord was painful. I mostly was OK tying shoes, but I did get some Velcro shoes. I highly recommend learning a shoelace knot that stays tied, so you only have to tie them once day. I use the surgeon’s shoelace knot / Sherpa knot.

Flossing. Dental floss was a lot more painful than shoelaces. Flossers don’t work that well, but the long-handled version was easier to hold than the tiny ones. To swap out the replaceable head, I learned to press it against the counter.

Opening jars. Accommodations only work up to a point. Grabby rubber, whatever. Those fat rubber bands on stalks of broccoli? Keep one around to stretch around a lit for lots of extra friction. Also, there are a lot of arthritis-focused aids for this. Talk to an OT for lots of options.

Child-safe pill bottles. Add a note at your pharmacy to use arthritis-friendly pill bottles. Our pharmacy has reversible lids that latch when put on normally, but just screw on when inverted.

Foil-packed pills. Some foil/bubble packages were almost impossible to open, even using a knife. Looking at you, Imodium. I asked my doctor for a prescription so I could get it in an accessible pill bottle. Had to have a brief phone chat with the pharmacist, but that was all. Same price as OTC.

Soda cans. The “stay-on-tab” on a soda can requires a substantial pressure on a small area of your finger. One of our measuring spoons has a long thin handle that I could stick through the loop to lever one open. Otherwise, I couldn’t open those at all.

Ridged knobs. Whether lamp switches or toothpaste tube caps, those ridges felt extremely sharp. I pulled out my bandana to cushion the lamp switches. For toothpaste, I put the cap on loosely.

Crank windows. Even our really nice Marvin crank windows needed more force than was comfortable. I grabbed the handle with parts of my hand that were less swollen and wrapped a bandana around the handle to spread out the pressure. Still not fun.

Typing. For quite a while typing was not comfortable. I got better with Siri dictation, including the edit commands. But don’t expect it to correctly spell “Arc’teryx”.

Fingerprints. One less common side-effect is losing fingerprints (adermatoglyphia). Not a huge deal, but Apple TouchID wouldn’t work, no matter how many times I retrained it. That meant typing my password a lot, but typing hurt. Sigh. I did a lot more on my iPhone, where Face ID worked. Also, it turns out the fingerprints are needed to separate a stack of coffee filters or printer paper.

Fountain pens. Fountain pens write with a lot less pressure on the paper, which was nice. But unscrewing caps was uncomfortable, so I wrote a lot with snap cap pens. For me, that was a pair of Waterman Le Man 100 pens and my dad’s Sheaffer Pen For Men. I also used my dad’s 1946 Parker Vacumatic, which has a screw-on cap that requires almost no force. Maybe it is just really worn.

Feet

Shoes. Walking around barefoot or sock-footed was painful, so I needed to wear shoes. But my toes were inflamed and very sensitive, so I needed a large toe box along with plenty of cushioning in the soles. Luckily, my regular Brooks Cascadia shoes did all that, but I did get a new pair to get fresh foam in the sole.

Socks. I was putting strong steroid ointment and urea cream on my feet twice a day, so I stuck with my regular white cotton socks. I switched to Gold Toe after Hanes added some treated cotton that irritated my skin (several years ago).

Pants. My toes were affected the most, inflamed and very sensitive. I switched to khaki slacks because jeans hurt as I pulled them over my toes, even with socks on.

Exercise. Daily walks were good for my health, but my feet didn’t allow it. I probably should have signed up for water aerobics, but I didn’t think of that. Though barefoot walking around the pool would have been a problem and I bet water shoes fit too tightly.

Recovery

Hand Foot Syndrome should resolve two to six months after finishing chemo. My last cycle was at a much lower dose, so I feel like recovery started then, meaning I’m at about four months now.

One finger is still a bit swollen and my skin is still sort of dry. The soles of my feet are slightly tender. But I’m back to daily walking, even a very short backpacking stretch, walking around San Francisco, and so on. My hands are fully functional (even to typing this).

It can take fingerprints up to two years to come back. Still time to schedule that crime spree.