[bevilj]

Hi Krissi,

Sorry to read that you have to start a new treatment plan. I'm hoping this one works wonders for you. I don't want to scare you with my story but I do want you to know that you are not alone if you have a tough time with your initial adjustment to your new plan.

I've been on Xeloda for over a year now and added Tykerb to the mix about 3 months ago due to progression. I experienced side effects along the way while solely on Xeloda but nothing that ever prevented me from getting out and doing things. I did find that over the course of the 2 weeks I was taking the pills, I would get progressively more tired. I also seemed to experience every side effect at one time or another. The hand/foot syndrome did get tough at some points but I found that constantly moisturizing with Weleda cream helped to heal my wounds quickly. The cracks in my fingers did give me a reprieve from washing dishes some days - there's always a silver lining!

I was taken off Xeloda in the fall due to eventual progression. It basically wasn't working anymore. But, thanks to my insurance coverage, I had to add it back into my treatment plan in order to get my Tykerb prescription approved. As you probably know, the clinical trials show great results when the 2 pills are taken in combo.

The first 6 weeks I was on both Xeloda and Tykerb were exactly the opposite of my experience on Xeloda alone. I did experience a handful of side effects but it was the gastrointestinal issues that prevented me from leaving my house some days. Luckily, I work part time from home and the bus that takes my kids to school picks them up at the end of my driveway. During those weeks, I tried changing my diet, doses of immodium and some other attempts to minimize the side effects but ultimately I lost about 10 lbs. and lost all energy and desire to do much of anything.

Since then, I have worked with my oncologist to make some modifications to my treatment plan. After hearing about my side effects, my onc decided to cut my Xeloda dosage in 1/2. That helped me quite a bit. I also decided that on days where I want to be active, I don't take my Xeloda at all. I shared this with my onc and he was ok with it since he didn't really think it was working anymore.

Now about 3 months later, my tumor markers have dropped significantly and my skin mets have almost visibly disappeared! And thanks to the changes made to my treatment, I experience less side effects and am active more often (I've skied a handful of days this winter). I still find that I am a bit drained for a couple of days at the end of the second week on Xeloda. But, it's nothing compared to how I felt on IV chemo. I am also working with a nutritionist to come up with a plan to help me better manage the days when I have GI issues (much less often than before).

Timing the taking of the pills has also changed for me along the way. I started taking Tykerb at night before I went to bed. This works for a lot of people from what I have read but it didn't work for me. I ended up being up a lot during the night with an upset stomach. The lack of sleep also got to me. I now take the pills (5/day) first thing when I wake up. I take my morning dose of Xeloda a bit later when I eat. I find that if I am going to have GI issues, it's usually in the morning and I'm usually feeling fine by midday, if not earlier.

Sorry for the long post here...Hope this helps you as you start on your new treatment plan. I wish you all the best ~ Jen