HER2 Support Group Forums - View Single Post - Any Stage IV deciding to go off Herceptin?

Andrea Barnett Budin · 10-06-2008, 10:34 AM

Please read my signature and cut and paste the link below for my story... AT THE BOTTOM OF THIS POST... BELOW THE BUTTERFLY

10 yrs of Herceptin. 10 yrs of remission.

My oncologist and my husband and I have decided to proceed, untethered yet ever vigilant. More jubilant than fearful, though it is surely a bit scary out here in uncharted waters.

But, guess I am used to being in the guinea pig group. Despite all odds and all the poor prognoses, I am called the miracle patient.

Onc was concerned about my building up a resistance to H. Believes the cancer cells that were in my body 10 yrs ago are gone. I can always return to H, if God forbid a trillion gezillion times an occasion arose. I have not burned any bridges behind me. And the H would likely work even better, says my Onc.

Plus I explain the toll te every 3 wk infusions were taking on me psychologically, without even realizing it.

I know Dennis Slamon has told a few women in similar circumstance, You're far enough out now. Don't worry. Go live your life.

I know 3 women who have chosen this route, much like me.

ANYONE ELSE??? Pray tell!!

Thoughts... Info... I surely understand the reservations, but...

I welcome your questions and any feedback!

With love,

http://her2support.org/vbulletin/showthread.php?t=35423

10-06-2008, 10:34 AM	#8
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	I Never Felt More Energized And Alive Before!! Please read my signature and cut and paste the link below for my story... AT THE BOTTOM OF THIS POST... BELOW THE BUTTERFLY 10 yrs of Herceptin. 10 yrs of remission. My oncologist and my husband and I have decided to proceed, untethered yet ever vigilant. More jubilant than fearful, though it is surely a bit scary out here in uncharted waters. But, guess I am used to being in the guinea pig group. Despite all odds and all the poor prognoses, I am called the miracle patient. Onc was concerned about my building up a resistance to H. Believes the cancer cells that were in my body 10 yrs ago are gone. I can always return to H, if God forbid a trillion gezillion times an occasion arose. I have not burned any bridges behind me. And the H would likely work even better, says my Onc. Plus I explain the toll te every 3 wk infusions were taking on me psychologically, without even realizing it. I know Dennis Slamon has told a few women in similar circumstance, You're far enough out now. Don't worry. Go live your life. I know 3 women who have chosen this route, much like me. ANYONE ELSE??? Pray tell!! Thoughts... Info... I surely understand the reservations, but... I welcome your questions and any feedback! With love, http://her2support.org/vbulletin/showthread.php?t=35423 __________________ 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... Last edited by Andrea Barnett Budin; 10-06-2008 at 10:35 AM.. Reason: clarity