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

Andrea Barnett Budin · 10-06-2008, 12:54 PM

You can note from my signature that I did 9 mnths of Taxotere when my bc recurred throughout my liver. We added the Herceptin after the first set of scans (chest/abd/pelv -- w/ and w/o contrast) 8 wks from beginning chemo. Wanted to be sure the T was working. Some shrinkage was noted in ea tumor.

I remained on H till this past July. 10 yrs.

I started w/ev 8 wk scans. Then eventually moved to ev 3 mnths and then ev 4, w/the caveat that I should not go any longer between scans. I am NOW at ev 6 mnths.

I get full blood workup w/lipid profile, tumor markers, CBC and everything you can think of ev 3 mnths. I collect ev report and ev test result. I keep bld w/bld, scans w/scans, mammos w/mammos, etc.

I go for ev 6 mnth transvaginal pelv sono -- to be told that my ovaries look beautiful.

I was going ev 6 mnth for ECHO cardiograms and eventually graduated to annually.

I will continue the ECHOs b/c I developed a small peri-cardial effusion (fluid around my heart w/Taxotere). To keep an eye on it.

I had also developed a pleural effusion (around my lungs) w/Taxotere but that slowly dissipated after a long while being off Taxotere.

I still have my port (of necessity) since no veins in my good arm work. Not that any in my other arm ever worked to begin with...

I have been running on fumes, believing H kept mets at bay. I remained NED from May '99. Now, if you read my COME MEET THE NEW ME and other related posts, I have -- after 10 yrs -- decided to let go of my blankie.

5 yrs ago going off H was suggested and both my husband and I felt that we shouldn't go around fixing what wasn't broken. If we could withstand the H financially (insurance continued to cover the costs), psychologically (which I felt I was doing -- remaining on longterm chemotherapy for the rest of my life) and physically (getting few side effects other than chronic fatigue, no small matter but relatively speaking not the worst thing -- and -- getting good ECHOs) -- we felt I should stick w/the plan.

H, after all, is the *easy* chemo. It could have been so much worse. But now I am ready to move on, at my favorite oncologist's urging.

Please read my posts re this topic. Much to talk and think about...

I send you energy full of wellness...

10-06-2008, 12:54 PM	#11
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	*The Big what To Do* Question... You can note from my signature that I did 9 mnths of Taxotere when my bc recurred throughout my liver. We added the Herceptin after the first set of scans (chest/abd/pelv -- w/ and w/o contrast) 8 wks from beginning chemo. Wanted to be sure the T was working. Some shrinkage was noted in ea tumor. I remained on H till this past July. 10 yrs. I started w/ev 8 wk scans. Then eventually moved to ev 3 mnths and then ev 4, w/the caveat that I should not go any longer between scans. I am NOW at ev 6 mnths. I get full blood workup w/lipid profile, tumor markers, CBC and everything you can think of ev 3 mnths. I collect ev report and ev test result. I keep bld w/bld, scans w/scans, mammos w/mammos, etc. I go for ev 6 mnth transvaginal pelv sono -- to be told that my ovaries look beautiful. I was going ev 6 mnth for ECHO cardiograms and eventually graduated to annually. I will continue the ECHOs b/c I developed a small peri-cardial effusion (fluid around my heart w/Taxotere). To keep an eye on it. I had also developed a pleural effusion (around my lungs) w/Taxotere but that slowly dissipated after a long while being off Taxotere. I still have my port (of necessity) since no veins in my good arm work. Not that any in my other arm ever worked to begin with... I have been running on fumes, believing H kept mets at bay. I remained NED from May '99. Now, if you read my COME MEET THE NEW ME and other related posts, I have -- after 10 yrs -- decided to let go of my blankie. 5 yrs ago going off H was suggested and both my husband and I felt that we shouldn't go around fixing what wasn't broken. If we could withstand the H financially (insurance continued to cover the costs), psychologically (which I felt I was doing -- remaining on longterm chemotherapy for the rest of my life) and physically (getting few side effects other than chronic fatigue, no small matter but relatively speaking not the worst thing -- and -- getting good ECHOs) -- we felt I should stick w/the plan. H, after all, is the easy chemo. It could have been so much worse. But now I am ready to move on, at my favorite oncologist's urging. Please read my posts re this topic. Much to talk and think about... I send you energy full of wellness... __________________ 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...