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Andrea Barnett Budin · 11-10-2007, 01:53 PM

Hi all!

This is so important! I was going to get to this topic Lani brought up, and Alaska Angel helped me move forward.

In '95 when I was first dx -- 4th stage invasive lobular carcinoma w/2 out of 21? nodes -- there was no idea of testing for HER2. But I lived on Long Island in New York and the national 1 woman in 10 at the time was much higher on Long Island! Something like 1 in 9, now 1 in 8. So a major study was underway. I was approached in pre-surgerical testing by a nurse who politely asked if I would donate a small portion of my to be removed tumor (9 cm) toward this study. I immediately agreed! I understood that it was crucial to know all we could possibly find by testing tumor pathology of breast cancer patients. I wanted to help. And I think each of us feels the same. I have participated in further studies since (on psychological investigation into those who survived HER2 metastatic cancer, by a group under Dr. Dennis Slamon at UCLA). Again, vital information that needs to be gathered and analyzed!!

HOW DO WE INSTIGATE ONGOING STUDY? Who needs to be contacted? Has anyone been approached as I was in '95? I was NOT asked in '98 when I metastasized, and I grieve for the loss of such invaluable information! How can we stop this foolish neglect. Lani is so right that the path to a cure would be shortened by the gathering and study of tumor pathologies. It is common sense. I cannot think of any one who wouldn't want to contribute their cells, blood, whatever toward finding a cure for this disease reaching epidemic proportions!
Andi

11-10-2007, 01:53 PM	#24
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	Essential Information Seems To Be Lost... Hi all! This is so important! I was going to get to this topic Lani brought up, and Alaska Angel helped me move forward. In '95 when I was first dx -- 4th stage invasive lobular carcinoma w/2 out of 21? nodes -- there was no idea of testing for HER2. But I lived on Long Island in New York and the national 1 woman in 10 at the time was much higher on Long Island! Something like 1 in 9, now 1 in 8. So a major study was underway. I was approached in pre-surgerical testing by a nurse who politely asked if I would donate a small portion of my to be removed tumor (9 cm) toward this study. I immediately agreed! I understood that it was crucial to know all we could possibly find by testing tumor pathology of breast cancer patients. I wanted to help. And I think each of us feels the same. I have participated in further studies since (on psychological investigation into those who survived HER2 metastatic cancer, by a group under Dr. Dennis Slamon at UCLA). Again, vital information that needs to be gathered and analyzed!! HOW DO WE INSTIGATE ONGOING STUDY? Who needs to be contacted? Has anyone been approached as I was in '95? I was NOT asked in '98 when I metastasized, and I grieve for the loss of such invaluable information! How can we stop this foolish neglect. Lani is so right that the path to a cure would be shortened by the gathering and study of tumor pathologies. It is common sense. I cannot think of any one who wouldn't want to contribute their cells, blood, whatever toward finding a cure for this disease reaching epidemic proportions! Andi __________________ 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...