I am on chemo for life. The chemotherapy I am taking is called Capecitabine. It is quite manageable compared to others, in the sense that it is oral, so can be taken at home, and I tolerate it well. I am not crippled by nausea and thus, this is the perfect maintenance treatment giving me a nearly-normal life. One side effect that I have quite strongly, though, is called hand foot syndrome. It’s medical name is palmar-plantar erythrodysesthesia. I am not sure about the exact reason. Something to do with the fact that hand and foot skin cells are among the fastest renewing in the body, and toxicity leaking from capillaries, the tiniest blood vessels, and building up in the hands and feet where capillaries are very dense.
How it affects every day life
Hand foot syndrome can be crippling. I cannot open most bottles or jars, I always have to use a towel. Often I cannot cook by myself. I need someone to handle the pots. Some days, I can’t write. Thankfully so far, typing is OK. At times, I need to walk with my arms stretched up straight over my head to reduce the swelling and I cannot tolerate heat or radiation (think sunshine or hovering a hand above a hot ;plate to feel if it’s hot already). Tying show laces is very sore. Every edge feels like a knife, event the folds in my skin. I cannot make a fist anymore but I cannot straighten my fingers either. My grip is crazy light so I keep dropping things. Turning a key in a lock is very painful! Other things, I have no more fingerprints at all (they would come back if I stopped the treatment) and weird deep new lines in my fingers that feel like I’m bending cardboard under my skin.
I have googled ways of coping with it but the advice seems to always be the same and only goes so far. So here are a few things I’ve learnt along the way.
My hands on a normal day. Ouch – it’s as sore as it looks… I’ll spare you my feet 🙂
Let me get to the meat of the topic:
What makes the syndrome worse?
- Hot weather.
During summer, you’ll see me lurk at the gym, at the mall, any place with just a little too much air conditioning. Hot weather burns! - Sunshine.
Sunscreen can help but we use our hands all the time, and the cream rubs off, making everything both sticky and leaving the hands without sunscreen. The best is to stick to shade. This applies to all my skin actually. I walk around with an umbrella for shade. - Immobility.
I have low blood pressure and when I’m immobile for a while, as soon as I move, my blood rushes down into my hands and feet and they feel like they are going to blow up. They swell too, and it gets very sore! - Dry skin.
I am constantly putting creams and lotions on my skin because when it dries, it hurts.
What helps?
- I don’t use soap more than I need to. I only use glycerine soaps. Never anti-germ ones like Dettol as they dry out the skin like crazy!
- I hydrate. I drink enough to be hydrated from within and use lotions to soften the skin from outside. More on lotions below.
- I take an anti-inflammatory supplement (astaxanthin – a carotenoid). No idea if it helps, but it doesn’t interfere with my chemotherapy treatment, so the doctor says, so I’m good to go.
- If it is no too hot, I put a lot of lotion on and wear thin cotton gloves to keep my world from being caked in lotion and to be able to keep working. Sometimes, I cut off the finger tips from the gloves, I find that for many manual tasks, having just the fingertips nude, is enough.
- I put my hands in cold water for a few minutes.
- I lovingly hold a cooler block from the freezer, or I put on in the bed and put my feet on it.
- I cook with latex gloves on. It doesn’t only spare my skin from the soap when washing my hands 10 times, it also softens the skin a bit because of the humidity that builds up in the gloves.
- I use a windscreen shade in my car. Few things burn more than a hot car interior and a scalding steering wheel.
- Every evening I use a cool/cold water foot bath with epsom salt and antiseptic liquid. After about 10 minutes, the skin is looser and softer. Perfect to absorb lotions (see below about products I use).
- Before I go to sleep, I put a thick layer of lotions on both my feet and my hands. See below for the details.
- I sleep with spa gloves and socks that have a silicone lining on the inside. I put them on every night. I wash them after one use (because otherwise bacteria grow and turn your nails yellow and all sorts of nasty things). This helps the lotions stay on the hands and not cake all over the remote controls, the books I’m reading etc. But I make sure I do everything I need before putting on the gloves because after that, I can’t even use my phone (except with a cheap rubber stylus that can be found on many pens nowadays), nor turn the pages of a book, except if the fingertips are cut off.
- When I wake up in the morning, I rinse both hands and feet in last night’s water with epsom salt and antiseptic liquid and wipe them dry. No need for a soak, the spa gloves and socks make sure the skin is soft. I put a thick lotion on my feet before putting the sicks on, and my sports shoes. I put on lotions on my hands. By the time I’m dressed the lotion is absorbed enough for me to go about my day.
About products for hands and feet
Certain lotions help, others make it worse. I prefer the gel-like lotions because any greasy ones make my hands feet or any body part warmer, I also don’t rub in any lotion too much or hardly at all – rubbing makes the hands sore!
Feet
In the morning, after rinsing my feet in the epsom salt antiseptic water and gently patting them dry with a towel, I use a high % urea cream. I use Crème Classique heel balm with 20% urea and put it all over my soles and toes. Then I wear socks and shows all day.
In the evening, my 10 minute soak in cold water has epsom salt and antiseptic. I use Dr. Sole epsom salt foot soak which has menthol and a lovely cooling after effect. I use Savlon as antiseptic liquid. I put a layer of Treet It tea tree antiseptic cream on my toe nails and toes, and a thick layers of ISDIN Podos Gel Oil on the soles of my feet. I them immediately put the spa socks on. I’m good for the night.
Hands
In the morning, after rinsing my hands in the epsom salt antiseptic water and gently patting them dry with a towel, I fist put a generous layer of retinol serum. I use Nutri Women Retinol serum. It’s meant for the face but my hand skin is currently way more fragile and sensitive than any healthy face. Also, there is a study about retinoids (the higher concentration prescription version of retinols) that appears promising. The consistency of the serum is delicious and it smells wonderful. Then I put Avene’s cicalfate hand cream. This gets much better absorbed than other barrier creams that my oncologist has recommended, so I can actually use my hands dring the day and not grease up everything. Also, barrier creams feel hotter than Avene’s cream. During the day, I sometimes put a couple of drops of Living Nature Manuka oil, which seems to help.
In the evening, I do the same as for the feet, but I usually soak for no longer than 4-5 minutes, because it’s boring and I can’t face the tv…. 😉 I also put Treet it tea tree antiseptic cream on my fingernails, and ISDIN Podos Gel Oil on my hands for the night.
So when I do all of the above, and stay cool, some days I get as well as this:
This is as good as it gets! Not bad eh?
A few words about this routine. Some days, I go from one state to the other and back, the hands change from minute to minute. I often have to interrupt what I am doing to cool down my hands with an ice block, or cold water, and hydrate them a bit more. It’s a continuous process. And I am sure the process will evolve as I learn to manage my hand foot syndrome better but for now, this is the best I can offer.
I think in future posts, I will talk about supplements, or face care. Let me know on Twitter if you’d like to hear about anything specific and I’ll happily share how I manage.
cancer #skincare #handfootsyndome #chemotherapy #erythrodysesthesia
