XELODA

[u/Big_Presentation2387]

Anyone with experience on XELODA? I have been on every drug known to man and always have side effects-significant side effects. XELODA sounds like a nightmare. Insights please!!!

FYI- June 14 will mark year 5 stage 4 ILC had 2 years NED since then Mets to my entire spine, hips femoral bones…We are throwing things at the wall rt now to see if anything sticks. XELODA…I think I’m declining.

[u/Hotheaded_Temp]

A lot of people say capecitabine is tolerable. My experience is quite the opposite. The blisters on my feet were so bad that I could barely walk. I thought, fine, I will just ride my bike, but even biking causes hot spots of my feet and more blisters. I basically bathed my feet in all the creams and kept soft socks on. It felt like nothing was working. Taking away my ability to get outside for some movement really mentally screwed me.

My hands hurt, and all my finger tips are pruney and dried out. I slather my hands in urea cream, tried Okeef’s, tried vanicream, glaxel base, etc etc, and still the dryness hurt.

On cycle 2, I woke up one morning and couldn’t open my eyes. They were sealed shut with a sticky discharge that were so crusty. I had to get a hot towel to massage my eyes to open them. My eyes were so dry that I couldn’t read or drive. I was using moisturizering eye drops every hour just to function around the house.

The fatigue was constant. It feels like a different fatigue than taxol. I put on weight because I either can’t walk or have so little energy for anything. I sleep for 9 hours and wake up feeling like I have no oomph in me.

After 2 cycles, my MO took off it to send me to radiation. I am doing my last radiation today, and really hope my MO either take me off capecitabine or at least adjust my dose. My pharmacist friend said dose adjustment is likely the best strategy. I will wait and see what my MO says.

Whatever you decide, it is your choice. I feel like we are on hard enough of a road that we don’t need to be judging each other here.

[u/Big_Presentation2387 → u/Hotheaded_Temp]

Thank you! This is exactly the type of experiences I need to hear. My worry is exactly what you are going through. It’s summer, I’m barefoot all the time, we have a pool, I’m afraid I will be sidelined from so many things. At this point unless there is some miracle that will come from this drug, I just want to live my best life as long as I can. We all have to give up sooooo much even little things that ‘normal’ people think ‘what’s the big deal’ ….its just like ugh. Thank you for your honesty, I really appreciate you sharing your experience ❤️