HER2 Support Group Forums - View Single Post - Invasive Lobular Cancer HER2+ve

Andrea Barnett Budin · 07-20-2012, 03:53 PM

Hi SuePen and y'all,

I don't get to the boards as often as I used to ('04 etc....). Much happening in my life. Not all good, but mostly, and I remain -- ONE WITH THE UNIVERSE, because of, and in spite of, it all... And I AM STILL STABLE (since '99). Miracles do happen!

Yes, I was dx in '95 with ILC -- age 50 (post meopausal). They didn't do the Her2 thing in those ancient days. I was borderline ER/PR. They put me on Tamoxifen, hoping I would derive some benefit from it.

3 yrs later the canser recurred. (Disrespect intended. Feels empowering... )...) Still ILC (invasive lobular carcinoma) but then throughout my liver. Then ('98) ER/PR -- negative. Hmmm. Then -- I asked to be tested for the HER2 gene, then only done at UCLA, where Dennis Slamon, the master behind the Herceptin saga was. My husband and I had been reading about all things breast cancer, though never expecting metastasis. Ever positive through and through, attitude-wise! Turns out -- I was 80% HER2 positive. That's how they graded it back then.

This was Aug '98. Herceptin was fast-tracked by the FDA on September 28, 1998 and Herceptin became available to all metastatic bc patients. Thank you God and Dennis!!

I was told this means -- highly aggressive form of bc. Which is why I chose Taxotere (along w/my 3rd onc's suggestion). I asked him why he chose that chemo drug. Answer: Because it is THE MOST AGGRESSIVE WEAPON WE HAVE IN OUR ARSENAL (again, '98). I decided to fight fire with fire. Take the harder road, my Inner Voice told me. Other oncs had suggested kinder gentler chemos, as they all KNEW I'd be on "long-term chemotherapy for the rest of my life".

Well, you can read my story below. I'm still here.

About 5 yrs ago my then new onc (brilliant w/what appears to be a personality disorder) questioned that I was ILC AND HER2+. Said that would be VERY UNUSUAL! I asked if he was questioning my original pathology reports. He said, Well, (he shrugged) doesn't matter. He also said it was remarkable that I was still alive. Guess so.

The right surgeons, 4 awesome oncs, fabulous nurses w/savvy, the right chemo, meditation, guided imagery, tenacity, tons of supplements daily and THE POWER OF THOUGHT and POSITIVITY brought me here I believe. And, I do BELIEVE!

I just kept putting one foot in front of the other, seeing that I was in a process and envisioning myself far far into the future, some 13 yrs later, glowing, healthy and well! These are essential ingredients for success in my view.

Any questions, please, please, ask away. I am here for you. Always. Even when away from the board. You are my Sisters. Family!

With Love and Light,

Andi

07-20-2012, 03:53 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	You are a potential miracle... Hi SuePen and y'all, I don't get to the boards as often as I used to ('04 etc....). Much happening in my life. Not all good, but mostly, and I remain -- ONE WITH THE UNIVERSE, because of, and in spite of, it all... And I AM STILL STABLE (since '99). Miracles do happen! Yes, I was dx in '95 with ILC -- age 50 (post meopausal). They didn't do the Her2 thing in those ancient days. I was borderline ER/PR. They put me on Tamoxifen, hoping I would derive some benefit from it. 3 yrs later the canser recurred. (Disrespect intended. Feels empowering... )...) Still ILC (invasive lobular carcinoma) but then throughout my liver. Then ('98) ER/PR -- negative. Hmmm. Then -- I asked to be tested for the HER2 gene, then only done at UCLA, where Dennis Slamon, the master behind the Herceptin saga was. My husband and I had been reading about all things breast cancer, though never expecting metastasis. Ever positive through and through, attitude-wise! Turns out -- I was 80% HER2 positive. That's how they graded it back then. This was Aug '98. Herceptin was fast-tracked by the FDA on September 28, 1998 and Herceptin became available to all metastatic bc patients. Thank you God and Dennis!! I was told this means -- highly aggressive form of bc. Which is why I chose Taxotere (along w/my 3rd onc's suggestion). I asked him why he chose that chemo drug. Answer: Because it is THE MOST AGGRESSIVE WEAPON WE HAVE IN OUR ARSENAL (again, '98). I decided to fight fire with fire. Take the harder road, my Inner Voice told me. Other oncs had suggested kinder gentler chemos, as they all KNEW I'd be on "long-term chemotherapy for the rest of my life". Well, you can read my story below. I'm still here. About 5 yrs ago my then new onc (brilliant w/what appears to be a personality disorder) questioned that I was ILC AND HER2+. Said that would be VERY UNUSUAL! I asked if he was questioning my original pathology reports. He said, Well, (he shrugged) doesn't matter. He also said it was remarkable that I was still alive. Guess so. The right surgeons, 4 awesome oncs, fabulous nurses w/savvy, the right chemo, meditation, guided imagery, tenacity, tons of supplements daily and THE POWER OF THOUGHT and POSITIVITY brought me here I believe. And, I do BELIEVE! I just kept putting one foot in front of the other, seeing that I was in a process and envisioning myself far far into the future, some 13 yrs later, glowing, healthy and well! These are essential ingredients for success in my view. Any questions, please, please, ask away. I am here for you. Always. Even when away from the board. You are my Sisters. Family! With Love and Light, 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...