[Andrea Barnett Budin]

Chellee and all you fabulous ladies who keep on fighting:
I was dx '95 4th stage 9 cm tumor + 2 out of 18 nodes. Mastec + 4 Adry and 8 CMF. Met into liver in '98 (found because "I" questioned slightly elevated liver enzymes (noted and dismissed by 2 docs) in last 3 comprehensive bld workups (done every 3 mnths). I asked for a liver sono. Don't even know where those words came from! Well, yes, I could justify an abdominal sono. Arrangments made. Sent me, w/apologies for CT scan because wasn't sure what he (radiol) was looking at. Multiple tumors throughout liver. Biop. confirmed met. 1 doc suggested taxol. 1 recommended navelbene. 1 thought Taxotere. I asked to be test for HER2 gene (in Aug of '98), my husband and I being up on everything re cancer and BC in particular. Came back 80% pos. Why did you choose Taxotere?, I asked my fav doc. He was thoughtfully and then said, What you have is a highly aggressive form of BC and Taxotere is the most aggressive tool we have right now in our arsenal. I was sold. Take the harder road w/good reason. They added Herceptin after 8 wks (to be sure Taxotere was shrinking/working). I was to stay on the Herceptin every wk NO MATTER WHAT. I could go 24 hrs before or after, but I had to strictly adhere to the protocol that had been proven in clinical trials. Ended Taxotere at the end of May '99. STAYED ON HERCEPTIN WKLY, THEN TRIPLE THE DOSAGE EVERY 3 WKS -- TO NOW! Saw Dr. Pegram in Calif, who worked w/Slamon to develop the drug that corrected the defective gene they'd isolated and hold responsible for 20-30% of BC.

Yes, it is very aggressive, but they know what's causing our BC! And they know how to target it. ECHO ev 4 mnths went to every 6 mnths. Pegram says (as of last yr) if no heart problems after all this time -- go for annual ECHOs AND STAY ON THE HERCEPTIN. My Pt. Washington, Long Island NY onc agrees. My NYC onc/nutritional expert agrees. My Boca onc agrees. They each have MANY patients on longterm Herceptin!!!!

I read this site and keep wondering -- why isn't everyone who is HER2 pos, and especially if they've had the add'l, now available, bld work that shows they are good candidates who can benefit from this miraculous cure -- why aren't they remaining on Herceptin?

Would love your feedback on this.

I am sending loving, healing energy to you all. I truly love you all. I love your wondrous fighting Spirits. I stand beside you and I am rooting you on. "Beautiful people do not just happen" as the post above mentioned Elizabeth Kuubler-Ross' quote. Beautiful people have known suffering, known struggle, known loss and have found their way out of the depths! Better people, not caving into bitterness. One letter makes all the difference. Fight on. Keep asking questions. Keep asking for help. Be firm but sweet is my motto. (Last wk I had to "fight" to get a CBC and then at 11.2 HGB suggest they call my insur co for certification to cover the cost of an Aranesp injection. New rules are in force, it seems. I was a wobbling basket case, practically begging for help! And, I got it. My chemo nurse said, you did the right thing. You have to be forceful and persistent.)

LOVE, ANDI