need encouragement & your insight

[PamP]

I have been away from this site for several months. I just needed a break from the emotional stuff of reading about this disease.

I have been feeling very well. Thanks to God! But I am so nervous about what might be brewing.

I was dx with ibc in 2001. A year later dx with bone mets. Currently i have been on xeloda/hercpetin for about 13 months. Other than the hand/foot stuff I've been feeling great on this treatment & the pet scans have showed stable with the bone mets: no new spots, other places nothing shows worse.

Here's the worry: the ca2729 tumor marker. I know this blood test is not always accurate, not all docs use it, etc. But here's the deal in my case. It has been fairly indicative for me as far as I know. When i started xeloda it was about 145. then the numbers tood a steady dip for a few months getting down to about 48. then they've been steadily climbing each month now for about 6 months. the last one a week ago was 179, a 35 point jump from the month before. My doc says he's nervous about the climb, but since nothing shows on the scan & I'm feeling okay, he says to stay the course for now, but he's nervous that the cancer is slowly growing somewhere 'sub clinically'.

He wants me to get on tykerb. Since I have bone mets and no 'measurable' organ involvement, according to my oncologist I am not eligible for a trial. But he also said it might be fda approved & available to me .... hopefully within the next several months. Anyone have any info on that? In the meantime, I'm really freaking out about what this tumor marker might mean.

I have been reading the posts the last few days & glad to see familiar names and people doing well. I'm worried about the people whose names I haven't seen..... so sorry to see the post about Judiek.

Thanks. Pam