Xeloda

holly422 · 03-09-2007, 06:53 PM

Hi, I am starting on Xeloda in a few days and I'm just trying to find some personal information on the side effects. I have read all of the information that they give you but I'm looking for real peoples responses. I'd appreciate any information that anyone could give.

Thank you,
Holly

Sheila · 03-09-2007, 07:27 PM

Holly

I have been off and on Xeloda with Herceptin the past year...actually Herceptin 3 1/2 yrs and Xeloda 1 yr....I was on 2 weeks on and 1 week off. I took 1500mg in the morning and 100 at night. The oly side effects I had were peeling skin on my fingers and burning feet with aching legs....it was very easy to take. I did seem to be really thirsty while on it....drank a ton of water. Other than that it has been smooth sailing. What is your dosage goiing to be and what type of mets is it for? I think you will find it a breeze...remembering to take meds twice a day was hard...I bought the 7 day pill boxes so I knew that I had taken it.

Sheila · 03-10-2007, 05:49 AM

Bumping this up so more can reply....Holly is starting Xeloda for brain mets.

Mary Anne in TX · 03-10-2007, 07:22 AM

Holly! I can't tell you my personal experience with Zeloda, but my friends at the treatment center who are on it or have been, say it's not too hard to tolerate (the feet things is annoying at times) and that it works for them. But most of all . . . best wishes for that treatment knocking out those mets "licky split"! ma

Lolly · 03-10-2007, 10:10 AM

Holly, I was on Xeloda for a year for my lymph node mets, just switched to Gemzar (am also on maintenance Herceptin) as Xeloda had stopped working to keep the nodes stable. I was on a very low dose, 500mg 2x's daily, but it was quite effective with very few side effects: some tiredness, slight neuropathy in hands and feet, but none of the severe hand/foot thingey. Probably due to the low dose.
PattyZ, a long time member, has been on Xeloda/Temodor for over 2 years now to control her brain mets; here's a link to her most recent post plus if you click on her name and select "Find More Posts By..." you'll get her full story. Hope this helps, keep us posted!

pattyz
http://her2support.org/vbulletin/showthread.php?t=27277

<3 Lolly

CSheley · 03-11-2007, 10:29 PM

Hi Holly!

I just stopped Xeloda due to the side affects and because my cancer continued to progress. My hands are still peeling from the burning sensation and I've had two ingrown toe nails due to the brittle affects on the nails. The worseFrom what I've read, however, my dosage seemed high -- 2,500 in the morning and 2,000 at night for one week then off a week and then repeat. My oncologist reduced the morning dosage to 2000 and that helped.

When the side affects got worse again, I actually felt like I was walking on a bed of sharp nails or on broken glass. We were going to reduce the doage again but due to cancer progression we stopped it completely. I was worried that there were not a lot of other options but my oncologist encouraged me that there are more drug combinations and we'll keep trying until one works.

Someone on this site suggested Balmex, a diaper rash cream. I tried several other creams and lotions but the Balmex worked best for me. Eurcern Calming Cream helped the feet at night. I also used cuticle oil which helped the nails. I did not connect the ingrown toe nails until just recent when the second one occurred within 4 weeks of the other and I've never had any problems before.

This is a great site and I've been a silent visitor for a long time. I pray that the Xeloda works well for you with very little side affects.

Carolyn

holly422 · 03-12-2007, 10:17 AM

Hello everyone. Well it's Monday morning and I just took my first dose of Xeloda. I called my oncologist to see if the 4,000 mg a day was too much along with two weeks on and one week off, but he is going to try this first. I go for Herceptin on Thursday, so then I can talk to him face to face and tell him that I think that 4,000 mg seems like alot and that one week on and one week off should be better. Thanks to all of you!

Sheila · 03-12-2007, 03:20 PM

Holly

Xeloda is given according to body weight...but the latest reports show that 2500 mg a day in 2 divided dosed is just as good and performs as well as the 4000mg dose. The standard of care is 14 days on, 7 off then blood tests to make sure your red blood counts stay up. I have never had a problem with counts.....maybe if you talk to your onc. he/she will change their mind. This was brought up back in Dec. at the San Antonio BC Symposium....I wish I could find the abstract. I do think you need to take it 14 on and 7 off....that is the norm, although some people are on smaller doses and take it continuously.
Hope this helps

betlen5 · 03-18-2007, 11:12 AM

I started Xeloda and Tykerb on the 9th of March and I started having pretty bad muscle pain from my hips to my knees yesterday. Hard to walk and sit. I don't know if it is the Xeloda or the Tykerb???

Any suggestions on releaving the pain?

Thanks Betty

holly422 · 03-19-2007, 07:22 AM

Betty, I'm not experiencing really any pain anywhere with the Xeloda, I'm just getting queezy throughout the day, so maybe it is the Tykerb. Sorry that I'm not much help. Holly

ELLE · 08-12-2007, 05:33 PM

I Would Like To Share The Following Info.- From Personal Experience- While On Xeloda And Tykerb-for Skin Dryness & Peeling On Hands- Gold Bond Ultimate Healing Lotion Is Fantastic* It Is Inexpensive-very Thick & Non-greasy-you Can Find It At Most Drug Stores. Elle