HER2 Support Group Forums - View Single Post

Andrea Barnett Budin · 10-14-2013, 11:22 AM

My fav onc wanted me to stop at 5 yrs. I couldn't let it go.

Orig dx w/stage 4 invasive lobular pleomorphic bc, involving 2 out of 21 nodes ('95) pre Vit H access as it was in clinical trails -- I recurred in '98 (tumors throughout my liver). I was told grimly and hesitantly that what I had was INOPERABLE, INCURABLE and that I WOULD BE ON LONGTERM CHEMOTHERAPY FOR THE REST OF MY LIFE. Herceptin became fast-tracked to all metastatic bc-ers 1 mnth after my metastasis.

So, when I could no longer tolerate Taxotere (fluid around my lungs and heart and lots more) after 9 mnths, I went on just Vit H. I intended to remain on it -- forever. For the rest of my life, which I believed would be well into my 90s...

When onc wanted me to stop after 5 yrs, I resisted. Strongly. I remained on for 10 yrs. Onc then drew line in the sand and pushed me.

I've now been off for 5 yrs and am still STABLE. I am now up to annual CTs (chest/abd/pelv), ev 6 mnth bld work including 2 tumor markers, ev 6 mnth exam (mnthly self exam), mammo w/sono 3 mnths after CT...

I would have to say, Don't let go of your safety net just yet. I am not a medical professional. But, I agree, too many go off and have recurrence I've noted, and it just isn't worth risking it, IMHO...

Sending you love,

Andi

10-14-2013, 11:22 AM	#17
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: How long Should I continue herceptin ? My fav onc wanted me to stop at 5 yrs. I couldn't let it go. Orig dx w/stage 4 invasive lobular pleomorphic bc, involving 2 out of 21 nodes ('95) pre Vit H access as it was in clinical trails -- I recurred in '98 (tumors throughout my liver). I was told grimly and hesitantly that what I had was INOPERABLE, INCURABLE and that I WOULD BE ON LONGTERM CHEMOTHERAPY FOR THE REST OF MY LIFE. Herceptin became fast-tracked to all metastatic bc-ers 1 mnth after my metastasis. So, when I could no longer tolerate Taxotere (fluid around my lungs and heart and lots more) after 9 mnths, I went on just Vit H. I intended to remain on it -- forever. For the rest of my life, which I believed would be well into my 90s... When onc wanted me to stop after 5 yrs, I resisted. Strongly. I remained on for 10 yrs. Onc then drew line in the sand and pushed me. I've now been off for 5 yrs and am still STABLE. I am now up to annual CTs (chest/abd/pelv), ev 6 mnth bld work including 2 tumor markers, ev 6 mnth exam (mnthly self exam), mammo w/sono 3 mnths after CT... I would have to say, Don't let go of your safety net just yet. I am not a medical professional. But, I agree, too many go off and have recurrence I've noted, and it just isn't worth risking it, IMHO... Sending you love, 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...