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Andrea Barnett Budin · 01-15-2008, 02:27 PM

I WAS DX W/INVASIVE LOBULAR + 2 out of 21 nodes in '95. No one was checked for HER2 at time in the world.

I was put on Tamoxifen, hoping I would derive some benefit as ER/PR *borderline*. When I recurred in '98 they told me to flush the Tamoxifen. One onc said it could have even caused my metastasis. New '98 pathology: Invasive lobular carcinoma throughout my liver AND HER2+ 80%!! It also showed I had become ER/PR negative!

Each time I go to my onc he says, You know it is highly unusual to be dx w/invasive lobular AND be HER2+. I alw say, I know. You told me...

He says, both are highly aggressive. I say, I know. Yet -- here I am!

Also -- prior to orig dx in '95 I was on HRT for a few mnths. Had uncontrollable bleeding and was given huge dosages of progesterone for 10 to stop this. It did not work. Then given 2 3-mnth Depos Provera (?sp) injections. That makes me wonder a lot as well.

Susan, what article are you referring to? Would love to know more about this... Thanks for starting this thread!
Andi

01-15-2008, 02:27 PM	#4
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	Inasive Lobular -- And -- Her2+++ I WAS DX W/INVASIVE LOBULAR + 2 out of 21 nodes in '95. No one was checked for HER2 at time in the world. I was put on Tamoxifen, hoping I would derive some benefit as ER/PR borderline. When I recurred in '98 they told me to flush the Tamoxifen. One onc said it could have even caused my metastasis. New '98 pathology: Invasive lobular carcinoma throughout my liver AND HER2+ 80%!! It also showed I had become ER/PR negative! Each time I go to my onc he says, You know it is highly unusual to be dx w/invasive lobular AND be HER2+. I alw say, I know. You told me... He says, both are highly aggressive. I say, I know. Yet -- here I am! Also -- prior to orig dx in '95 I was on HRT for a few mnths. Had uncontrollable bleeding and was given huge dosages of progesterone for 10 to stop this. It did not work. Then given 2 3-mnth Depos Provera (?sp) injections. That makes me wonder a lot as well. Susan, what article are you referring to? Would love to know more about this... Thanks for starting this thread! 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...