Tykerb/Xeloda

[WayTooYoung]

I started a new thread as I am unsure what proper etiquette is for this forum...hope that is okay. I just started treatment today and am feeling all sorts of anxiety. I am hoping someone can help answer some questions I have...do I have to wait a certain amount of time after taking the pills before eating again? Also, approximately how many days after starting the treatment do side effects start?

I work full time and am wondering if it will affect me...

[jene1835]

Hello WayTooYoung: I am a newbie, just joined today. I'm Stage IV Metastatic Breast cancer with bone mets in 2009. Breast recur with mets to right cerebellum 2012. Craniomity 8/2013. 2014 brain recur, age 53.

I was on Tykerb, just like you 5 pills day, empty stomach. I take all my medication(s) in the morning when I first wake up - - then there is no question (for me) as to whether or not I took them. It is is the easiest for me.

I am currently off of Tykerb since October 2014 when my brain tumor showed recur and growth (1.1mm) My only options were cyberknife radiation, of which I had 2 (May 2012 and May 2014) and since being Stage IV I will get chemo fir my life time.

I am currently in a trial of Neratinib and Xeloda. I have been in this trial since 10-28-2014 its purpose was to address all of my tumors growths, which I will say has not worked as of yet. My tumor in cerebellum (right side) is growing. The trial is 21 days per cycle. 6 Neratinib one time day with food. 3 Xeloda 2 times a day with 12 hour intervals between each 3 pill dosage with food. Lomotil up to maximum of 8 tablets a day to control diarrhea. These are for 14 days. Do not take Neratinib for 7 days, but continue with Neratinib and Lomotil. At the end of the cycle, go to the clinician, refill my pills and start the next cycle. I am getting ready to start Cycle 5 Day 1 on Tuesday Jan 20th.

I am no longer on Tykerb, Arimidix, or Herceptin. I get Zometa only every three months (next one is Feb 2015) because I am at my five year mark.

How are you tolerating your treatment(s)? Do you get reimbursed for Tykerb? I have information on a reimbursement place . . . coz it is very costly, as you know.

I'll be checking this site to see if there is a response from you.

Take Care - - Keep looking up!

[WayTooYoung]

Hello Jene1835, so good to hear from you. I don't come on this often so it's always nice to see someone is commenting with their experiences or sending me messages of hope. I am tolerating my treatments well...it was a rough start in the beginning. But each round makes it easier...I am finishing round three now. I seem to experience different symptoms each round such a violent acne, mouth sores, and skin sensitivity. I really do not like how it's making my hands and feet look. I see dark spots and my fingertips are dark. I feel self conscious about it...how are you feeling? How does your body feel?