Hello old friend . . the question is do you remember me??? This is Jackie aka bandlady. I think I'm a fellow Bone Marrow buddy. June 18th I celebrated 10 years of survival/struggle with a phone call from my onc saying the rash on my rt. breast and left arm (???) is indeed now IBC, AND he ironically put me on Tykerb.... I knew we were soul mates
We tried Tykerb 1250 mg/day and the "rash" they mention is indeed acne from chin to eyebrows . and the "diarrhea" for me began 3 days after and got up to 10 times a day until we finally stopped Tykerb a week ago. . . Funny thing about cancer . . puts you right between adolescense and Depends
So now the game plan is Xeloda beginning tomorrow . . past experience is fatigue and infection under my finger nails - which began my lymphedema . . ahhhh another story. I don't look forward to it but he is insisting due to the IBC. (By the way other than this little setback I have had two completely clean scans in the past year so I guess the rash on the breast and arm is pretty minor -- Tykerb had also almost made it disappear in two weeks.)
We will try again with Tykerb in a week but reducing the dose to 500 mg daily for a week and increase the daily dosage by one tablet each week to see at which point the diarrhea kicks in and then go back to the previous dose (my game plan which he actually approved!!)
Enough of my horror stories. I don't check in much because I'll scare all newbies to death. But anyone that I have now terrified please know that I am GREAT! In the pasy 10 years I've seen my children grow, got a now 5 year old grand child, saw my oldest graduate from college and get married (the same weekend - ugh!), changed jobs, got my master's and made many wonderful friends. Hello again gang!
Hugs to all -- Life is good!!!!
P.S. I'm about to go to Maine on vacation and looking for a Peg Gray -- please let me know if anyone hears from her.
Post Edited By Moderator (gma) : 6/28/2007 6:54:28 AM (GMT-6)