Xeloda side effects: Hi fellow metsters... - SHARE Metastatic ...

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Xeloda side effects

suzesunshine profile image
6 Replies

Hi fellow metsters,

My tumor markers are up, so doc is taking me afinitor and aromasin. I start Xeloda in one week. I know the side effects can be bad, like hand and foot syndrome. Any advice or suggestions?

Thank you, Sue

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suzesunshine
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harriet91 profile image
harriet91

Hi sue, I’m on my 4 cycle with xeloda. I did have issues with hand foot initially which were pretty significant. I started taking B6 daily at my md’s recommendation and moisturize my hands and feet like a fiend. I have been going to accupuncture weekly. Part of my issue particularly is that I am a lifelong picker so that does not help. My doctor modified my dosage from 8 pills to 7 daily which helped greatly, in addition this cycle they said I should take the pills one week on and one week off instead of the 2 weeks on and one week off. The two changes have been a game changer and I have no blisters or burning on my feet and the peeling and pain in my hands have also greatly reduced. The great news for me is that the Xeloda has worked which was not the case for the prior therapies (lestrozal and ibrance and then faslodex and ribociclib). I progressed on both in under a year. In my first scans on Xeloda they spots on my liver and lungs which indicated progression at my last scans are now gone! My original Mets was to my spine and pelvis. They also believe Xeloda is working on the spots in my bone. Be vocal with your doctor about any issues/side effects you encounter, there are options to make thing better.

suzesunshine profile image
suzesunshine in reply toharriet91

Thank you for your advice. I read, on one blog, that some are using a cream called Weleda from Target. What cream do you use?

harriet91 profile image
harriet91 in reply tosuzesunshine

My dr suggested aquaphor which I use on both hands and feet. During the day I moisturize my hands every time after I wash them. When I get home from work I either use aquaphor or Burt’s Bees coconut foot cream for feet and then put my feet in socks. I will also put my hands in cotton or moisturizing gloves. But since I’ve started this new cycle have so far not needed to do that with my hands. I’ve limited my housecleaning too since the cleaning fluids and cleaning action are not ideal and rubber gloves can worsen the issue. I also wear flats with a cushioned insole whenever work attire allows. Have not worn a high heel since I started the Xeloda but might try it as appropriate now that things have settled with my feet

suzesunshine profile image
suzesunshine

Ok. Thank you so much.

I used a cream supplied by the Xeloda suppliers - it was basically pure milking salve as we used to use in the veterinary hospital to keep hand protected from harsh cleaners. I suppose it is actually smart lanolin - pretty pink and no smell. Anyway it worked very well but one also has to be aware every day of how the skin is feeling and react accordingly. I was on Xelodafor 11 months before it started to fail and my oncologist would not increase the dose at that stage as she said my hands and feet would really start to suffer - they were under control (I wasn't too aware of any discomfort!) but would deteriorate if we went higher.

Hope the xeloda works well for you as I found any side effects quite liveable

suzesunshine profile image
suzesunshine

Interesting that the cream was supplied by Xeloda suppliers. I'm praying that it will work and the side effects will be minimal. What treatment are you on now? How are you feeling?

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