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Andrea Barnett Budin · 10-21-2008, 12:49 PM

I hear you loud and clear, Jean!

In '98 my top NY onc never brought up the subject of HER2 or Herceptin. I asked for the test. I had been reading about it (keep up-to-date on all things bc since my initial dx in '95). I knew H was in third stage clinical trials. I thought -- IF I am HER2+ (and I just had this inexplicable feeling that I was) -- MAYBE I could get into a trial. One was ongoing w/my Florida onc.'s office.

I was HER2+. But -- I had too much chemo from '95 and was disqualified from the trial. Lucky for me H got FDA fast-tracked and became available to all metastatic patients 6 wks later! I feel so blessed to have been in the right place at the right time.

My husband was distressed that I was HER2+ b/c he knew how aggressive it is. But, in my mind, the know what's causing *my* bc AND they have developed a drug to shut off my specific malfunction.

I've hugged Dennis Slamon in an exam room in Santa Monica, thanked him profusely and Paul and I were walking on air for at least 2 days after our meeting and chatting -- each delighted to meet the other. I represented the fruit of all his labors. He is my hero!

However, I have a friend who was recently dx w/bc. Lumpectomy. Radiation. Clear around the margins. But they did not check lymph nodes. They did not check for HER2. I tried to urge this much beloved dear old friend, but she assured me repeatedly that she was getting excellent care. Yes, but, like you Jean, w/top NY oncs -- in '07! -- and not testing for lymph nodes OR HER2???? I am still beside myself with worry... And outrage...

Surely this is not an isolated incident. HOW CAN THIS BE HAPPENING??

10-21-2008, 12:49 PM	#5
Andrea Barnett Budin Senior Member Join Date: Oct 2005 Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW... Posts: 1,904	More Outrage... I hear you loud and clear, Jean! In '98 my top NY onc never brought up the subject of HER2 or Herceptin. I asked for the test. I had been reading about it (keep up-to-date on all things bc since my initial dx in '95). I knew H was in third stage clinical trials. I thought -- IF I am HER2+ (and I just had this inexplicable feeling that I was) -- MAYBE I could get into a trial. One was ongoing w/my Florida onc.'s office. I was HER2+. But -- I had too much chemo from '95 and was disqualified from the trial. Lucky for me H got FDA fast-tracked and became available to all metastatic patients 6 wks later! I feel so blessed to have been in the right place at the right time. *My husband was distressed that I was HER2+ b/c he knew how aggressive it is. But, in my mind, the know what's causing my* bc AND they have developed a drug to shut off my specific malfunction. I've hugged Dennis Slamon in an exam room in Santa Monica, thanked him profusely and Paul and I were walking on air for at least 2 days after our meeting and chatting -- each delighted to meet the other. I represented the fruit of all his labors. He is my hero! However, I have a friend who was recently dx w/bc. Lumpectomy. Radiation. Clear around the margins. But they did not check lymph nodes. They did not check for HER2. I tried to urge this much beloved dear old friend, but she assured me repeatedly that she was getting excellent care. Yes, but, like you Jean, w/top NY oncs -- in '07! -- and not testing for lymph nodes OR HER2???? I am still beside myself with worry... And outrage... Surely this is not an isolated incident. HOW CAN THIS BE HAPPENING?? __________________ Andi BB** '95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive... '98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!) + good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either... Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...