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Andrea Barnett Budin · 08-26-2013, 12:48 PM

Came upon this old thread, as I was following Lani's pleumorphic comments, searching for information I could wrap my brain around. Thank you Lani! So nice to hear from you. Could you possibly explain the pathway thing?

http://her2support.org/vbulletin/showthread.php?t=43171

In '95 I was 4th stage invasive lobular (2 out of 21 nodes involved) 9 cm tumor. I was ER/PR -- borderline. Previous mammo showed normal. "I" found this huge palm-sized hardness in my left breast. It was never a lump. More a general hardness. Having turned 50 I thought, well my body is changing???? But moved my next mammo up and went to gyn who'd not found anything unusual at last exam. He was in shock when he saw me. How could this have happened???!!!!! He was panting and pacing in circles, obviously very distressed. FYI: I was post-menopausal...

The nurse came to me when he left the room, threw her arms around me, and with a heaving chest said, I WILL SAY A PRAYER FOR YOU..." I knew I was in big trouble...

After mastec, tram flap reconst, chemo I was given Tamoxifen.

Recurred in '98. 4th stage invasive lobular throughout my liver. I asked to be tested for the HER2 gene. Paul and I had been informing ourselves since '95. (Herceptin was still in clinical trials, but...)

My reasoning was if I am HER2 + then they know what's causing my bc and -- as I live in hope -- Herceptin can target that bad gene.

I was HER2+ as of '98 (they didn't check such things in '95). AND I WAS ER-/PR-. I HAD BEEN TOLD ER/PR NEVER CHANGES. WELL... If you read the link above you'll see that Jackie also changed ER/PR. ?????????????? What's up with that?!!!!!!!!

I was told I was 80% HER2 positive in '98, which is the way they categorized us back then.

Docs told me to flush Tamoxifen down the toilet. One mentioned it could have caused my recurrence. Swell!

I think had I had the advantage of Herceptin from the getgo, maybe I wouldn't have recurred!

The FDA fast-tracked Herceptin, slated for more years of clinical trials and dilly dallying -- cause women were dying and being given 3 mnths to live -- and were begging for Herceptin. HERCEPTIN BECAME AVAILABLE TO METASTATIC BC PATIENTS -- SEPTEMBER 28, 1998. 1 mnth after I recurred! Talk about being in the right place at the right time!

So, bottom line, lobular is aggressive, HER2+ is aggressive and
I am sticking with my multiple supplements to help me keep my head above water.

Flori were you lobular (per 2010 post)? Now I'm confused...

Andi

08-26-2013, 12:48 PM	#15
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	Re: Who's her2 and lobular...?? Came upon this old thread, as I was following Lani's pleumorphic comments, searching for information I could wrap my brain around. Thank you Lani! So nice to hear from you. Could you possibly explain the pathway thing? http://her2support.org/vbulletin/showthread.php?t=43171 In '95 I was 4th stage invasive lobular (2 out of 21 nodes involved) 9 cm tumor. I was ER/PR -- borderline. Previous mammo showed normal. "I" found this huge palm-sized hardness in my left breast. It was never a lump. More a general hardness. Having turned 50 I thought, well my body is changing???? But moved my next mammo up and went to gyn who'd not found anything unusual at last exam. He was in shock when he saw me. How could this have happened???!!!!! He was panting and pacing in circles, obviously very distressed. FYI: I was post-menopausal... The nurse came to me when he left the room, threw her arms around me, and with a heaving chest said, I WILL SAY A PRAYER FOR YOU..." I knew I was in big trouble... After mastec, tram flap reconst, chemo I was given Tamoxifen. Recurred in '98. 4th stage invasive lobular throughout my liver. I asked to be tested for the HER2 gene. Paul and I had been informing ourselves since '95. (Herceptin was still in clinical trials, but...) My reasoning was if I am HER2 + then they know what's causing my bc and -- as I live in hope -- Herceptin can target that bad gene. I was HER2+ as of '98 (they didn't check such things in '95). AND I WAS ER-/PR-. I HAD BEEN TOLD ER/PR NEVER CHANGES. WELL... If you read the link above you'll see that Jackie also changed ER/PR. ?????????????? What's up with that?!!!!!!!! I was told I was 80% HER2 positive in '98, which is the way they categorized us back then. Docs told me to flush Tamoxifen down the toilet. One mentioned it could have caused my recurrence. Swell! I think had I had the advantage of Herceptin from the getgo, maybe I wouldn't have recurred! The FDA fast-tracked Herceptin, slated for more years of clinical trials and dilly dallying -- cause women were dying and being given 3 mnths to live -- and were begging for Herceptin. HERCEPTIN BECAME AVAILABLE TO METASTATIC BC PATIENTS -- SEPTEMBER 28, 1998. 1 mnth after I recurred! Talk about being in the right place at the right time! So, bottom line, lobular is aggressive, HER2+ is aggressive and I am sticking with my multiple supplements to help me keep my head above water. Flori were you lobular (per 2010 post)? Now I'm confused... 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...