Friday, July 3, 2015

Not for the squeamish: Case study of urea for hand and foot syndrome on Xeloda:

Xeloda update.

(More Pics coming soon)

This drug has definitely brought me to the edge of despair. I know I should be sorry to say good-bye to it but quite frankly, it was not worth it for me. This is not easy to admit because I am stoic and can endure but I still have to live my life and go to work every day.  Good-bye was far too easy.

  • Flossing teeth can result in a nasty cut on the hands as everything tears through the skin.
  • Washing hair is best done with gloves on because the hair catches on loose skin, tearing it.
  • Bending your finger causes the crease in your finger to open up into a painful gash.
  • A bit of paper on your finger turns out to be shredding skin. It’s best not to pull on it.
  • A run tears up your feet so that walking for the next 5 days feels as though you have broken glass underfoot – trapped in your socks.
  • The infernal tingling and burning comes on at the most inconvenient times.
  • Popping open a lid requires a knife
  • If you have no one available to unscrew the lid of a bottle, you go thirsty
  • You pick up everything that may be remotely hot with a cloth because you cannot feel if you are burning.
  • You cannot go to the hot tub – no soaking.
  • Showering burns your hands and feet like the devil.
  • If something slips through your fingers, it’s going to cause a great deal of pain. 
I pick up the toothpaste and balance it in my hand, trying it out, rolling it in my palm until I find a spot where I can squeeze the tube without causing pain. But I can’t squeeze hard enough. I’m going to have to collect a tool but my husband is there so I ask him to do it. I marvel at the way he takes the tube and easily squeezes, asking how much I want.

I watch him effortlessly open a can with a can-opener and remember that I used to be able to do those things.

What I wish I had known and special thanks to @groz_P

I wish I had known about Revitaderm with 40% urea. It’s available from Amazon without a prescription. It softens the skin so no more blisters. I hated pricking those never-ending blisters that always formed. I put it on twice a day and over it, I put on Sudocrem. I have to get that from the UK, It’s a nappy (diaper) rash treatment. According to the nurse (who asked a pharmacist on my behalf), urea softens the skin so that other treatments can penetrate through the skin. That’s why I add the Sudocrem on top of the Revitaderm. It softens and heals. However, it does nothing for the toenails and they keep popping off like popcorn in hot oil. OK, that has put me off popcorn. Ignore that comparison. 

The skin still peels horribly but I no longer have to keep putting on hundreds of Band-Aids and dressings. I just have to add gauze to the most painful areas. I very rarely get to wear regular shoes. I found a pair way too big for me and carefully arrange cotton padding around my feet.

In between I use shea butter to moisturize and I love my white gloves.

It’s been a week now since I stopped the Xeloda. It will probably be a few more before my hands and feet heal. All I know is that I could not go on like this. Every task was an effort so that I balanced whether it was worth it or not. 

The cost of a quiet walk.

Nasty pictures below:

After 1 day 

Before treatment