Any anyone had Xeloda and proton beam therapy for TNBC?

Posted by leolion811 @leolion811, Apr 27 4:43pm

Any anyone had XELODA for TNBC? I am on my 2nd reoccurrence for TNBC ( in 4 and 1/2 years). How about Proton Therapy? I am starting this Monday, April 29th with 6 weeks of Xeloda & Proton Therapy Monday thru Friday? I am trying to be ready to start but very anxious because of all the terrible side effects for both. Thanks 😊

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I had a year of Xeloda for TNBC - started out as 6 months, 2 wks on, one off, with a ramp up to that as I finished out radiation.

Pretty quickly after beginning full dose I was suffering from the hand/foot syndrome too much and had to switch to a year - 1 wk on, 1 wk off.

That was 2 years ago, and the skin on my hands is still recovering, however I haven't had a reoccurrence yet.

Also, besides physical symptoms there is insurance concerns. Because Xeloda was a pill it's billed on the **prescription** side of your insurance, not the medical side. Also, you can't get it at just any pharmacy, I had to go through CVS Caremark.

It took two rounds for my insurance to kick in, so before they had my specifics each round round was billed at $1500, which is what CVS estimated my prescription side would cover.... Most insurance is not great for prescriptions of this nature.

Luckily our insurance covered it by a huge margin and the $1500 dropped down to $8 each round. My oncologist said we were extremely lucky, though. Usually the out of pocket is pretty high,she said.

Good luck!

For the side effects I recommend Aquifer every night with spa gloves and socks. You may need to glove up during the day, too, during active treatment.

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What was your dosage amount? Mine will be 1000mg in AM and again 1000mg in PM.

Thanks for all of your suggestions. I am loaded up with all kinds of creams, lotions
Plus for Proton Therapy, my oncologist said I will burn around week 3. Plus I got all kinds of gloves & socks ready.

My Medicare picked up Xeloda at 100%. At a specially pharmacy that they shipped over nite.

Hope you are doing well. 🙏🏼

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