HER2 Support Group Forums - View Single Post - Sisters with Mets...should I stop Herceptin?

Andrea Barnett Budin · 04-11-2013, 06:52 PM

Well, I am surely late to this party. Sooo sorry. I was reading away just now and around page 2 I noticed -- 2011...???!!!! I kept on reading.

Just reporting in, as I wish those who are not NED prayers and hopefully some inspiration.

4th stage from the getgo (1995). Recurred in August of '98 throughout my liver. Terrified. Only then did they test for HER2 which I asked for, having kept up on the bc world as a highly interested recovered patient, or so I thought. Tested 80% positive. That's how they graded it back in the day. And I was glad at that news, since Dr. Slamon had not only isolated that misbehaving gene but helped develop Vit H to correct it. Despite the horrid statistics I felt I had genuine hope.

I did Taxotere for 9 mnths (ev wk for 6 wks, off for 2). Added Herceptin 2 mnths in, to make sure the Taxotere was working. It was shrinking my multiple tumors. Onc was having radiologist measure ea and ev one. I'd gather my reports and compare.

Was on Vit H from Nov of '98 till July of '08. June scans will PLEASE say I am still STABLE. Blood work in January attests to that potential outcome.

I WAS PREPARED TO REMAIN ON VIT H FOR THE REST OF MY LIFE, WHICH I ALWAYS SPECIFIED WOULD BE A LONGGGG LIFE FULL OF HEALTH AND LOVE. MIGHT AS WELL BE SPECIFIC IF WE'RE DREAMING, RIGHT?

ABOUT 5 YRS OUT, MY FAV ONC SAID I COULD STOP H. (HE SAID HE'D JUST ATTENDED A CONFERENCE WHERE DR. SLAMON SAID 5 YRS WAS AS GOOD AS 10.) I WASN'T READY. IF IT ISN'T BROKEN, BLAH, BLAH, BLAH... MY OTHER ONCS CONCURRED WITH ME, AS DID MY HUSBAND. MY FAV ONC WENT TO UNIV OF TENNESSEE TO HEAD THE ONC DEPARTMENT, BE A PROFESSOR. THAT WAS WRENCHING. HE RETURNED TO BOCA 5 YRS LATER.
I RAN TO HIM OF COURSE WITH OPEN ARMS. AND I KNEW -- FIRST THING AFTER HUGS WAS -- YOU HAVE TO GET OFF OF H. I THINK I WAS READY.

NOTE: FOR THE FIRST 3 YRS OF BEING ON H, I WENT WKLY. AFTER 1 YR MY FAV ONC SAID, THEY'VE DONE STUDIES IN FRANCE AND YOU CAN GET TRIPLE THE DOSAGE EV 3 WKS. VERYYYY TEMPTING, BUT NO. I'LL WAIT. I WAITED 2 YRS TO MAKE SURE EVERY ONE OVER THERE WAS STILL ALIVE. THEN I GRADUATED TO EV 3 WKS FOR 7 MORE YRS. I AM CAUTIOUS!!!!!

I STOPPED H IN JULY '08. I WAS GETTING SCANS AT THAT POINT EV 6 MNTHS. LAST YR I GRADUATED TO ANNUALLY. MY EV 3 MNTH BLOOD WORK BECAME EV 6 MNTHS. IT WAS SCARY, I'M NOT GOING TO LIE. BUT I MOVED FORWARD WITH A DEGREE OF COMFORT. I SEE MY ONC EV 6 MNTHS. I GET A SONO W/MY ANNUAL MAMMO (UNILATERAL), WHICH STILL BEFUDDLES ME. I THINK OF MY LEFT BREAST AS MY LEFT BREAST. THE MEDICAL WORLD SEES IT AS A STOMACH I SUPPOSE, AS THAT IS FROM WHERE IT CAME (TRAM FLAP).

I SAID TO MY HUSBAND, IF I WERE TO GOD-FORBID GET CANCER THERE -- WOULD IT BE STOMACH CANCER??? WE LAUGHED. WE MUST KEEP LAUGHING...

AFTER H THE BIGGEST PERK WAS UNEXPECTED. I WAS SOOOO ACCUSTOMED TO GOING EV 3 WKS (ALWAYS BROUGHT BAGELS FOR EVERYONE W/CREAM CHEESE, THEY LOOKED FORWARD SO TO MY VISITS!!) THE BREAK FROM SEMI LIVING IN THE CHEMO ROOM WAS EXHILERATING. I HADN'T REALIZED WHAT A TREMENDOUS PSYCHOLOGICAL TOLL THAT FAMILIAR TRIP WAS TAKING ON MY PSYCHE. FINALLY, A REAL VACAY!!!!!!

THIS IS WHAT I PRAY FOR FOR EVERY ONE OF MY SISTERS.

I DO MY SUPPLEMENTS TWICE A DAY, EVERY SINGLE DAY, SINCE OCTOBER OF '98. FOR ALL THE REASONS I MENTION IN MY THREAD -- WHY I TAKE SUPPLEMENTS, IF YOU'RE INTERESTED.

I MEDITATE. EVERY DAY.

MY FINGERNAILS WERE AWFUL ON H. MY ENERGY IMPROVED OFF H, BUT I SUPPLEMENT. (I TAKE POWDER FOR CHRONIC FATIGUE AND B-12 SUBLINGUALLY EVERY DAY, PLUS, PLUS, PLUS...)

THE NEUROPATHY I HAD WAS TRULY PAINFUL BUT THAT STOPPED WHEN I STOPPED TAXOTERE.

EVERY BODY IS DIFFERENT. EVERY CANCER IS DIFFERENT. EVERY REACTION TO MEDS IS DIFFERENT. I FERVENTLY PRAY YOU EACH FIND YOUR PERFECT RECIPE FOR SUCCESS. WITH ALL MY HEART, THAT IS WHAT I WISH FOR YOU.

SO THIS JULY WILL BE 5 YRS OFF OF H.
I SERIOUSLY BOUGHT A SMALL PEWTER FIGURINE, ON BENDED KNEES, ARMS OUTSTRETCHED, PALMS DOWN, FOREHEAD TO THE GROUND -- TO REMIND EVERY SINGLE DAY -- TO LOOK UP AND SAY THANK YOU. THANK YOU FOR MY LIFE.

SENDING BLESSINGS AND HEALING LOVE AND LIGHT TO EACH AND EVERY ONE OF YOU...
Andi

04-11-2013, 06:52 PM	#60
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: Sisters with Mets...should I stop Herceptin? Well, I am surely late to this party. Sooo sorry. I was reading away just now and around page 2 I noticed -- 2011...???!!!! I kept on reading. Just reporting in, as I wish those who are not NED prayers and hopefully some inspiration. 4th stage from the getgo (1995). Recurred in August of '98 throughout my liver. Terrified. Only then did they test for HER2 which I asked for, having kept up on the bc world as a highly interested recovered patient, or so I thought. Tested 80% positive. That's how they graded it back in the day. And I was glad at that news, since Dr. Slamon had not only isolated that misbehaving gene but helped develop Vit H to correct it. Despite the horrid statistics I felt I had genuine hope. I did Taxotere for 9 mnths (ev wk for 6 wks, off for 2). Added Herceptin 2 mnths in, to make sure the Taxotere was working. It was shrinking my multiple tumors. Onc was having radiologist measure ea and ev one. I'd gather my reports and compare. Was on Vit H from Nov of '98 till July of '08. June scans will PLEASE say I am still STABLE. Blood work in January attests to that potential outcome. I WAS PREPARED TO REMAIN ON VIT H FOR THE REST OF MY LIFE, WHICH I ALWAYS SPECIFIED WOULD BE A LONGGGG LIFE FULL OF HEALTH AND LOVE. MIGHT AS WELL BE SPECIFIC IF WE'RE DREAMING, RIGHT? ABOUT 5 YRS OUT, MY FAV ONC SAID I COULD STOP H. (HE SAID HE'D JUST ATTENDED A CONFERENCE WHERE DR. SLAMON SAID 5 YRS WAS AS GOOD AS 10.) I WASN'T READY. IF IT ISN'T BROKEN, BLAH, BLAH, BLAH... MY OTHER ONCS CONCURRED WITH ME, AS DID MY HUSBAND. MY FAV ONC WENT TO UNIV OF TENNESSEE TO HEAD THE ONC DEPARTMENT, BE A PROFESSOR. THAT WAS WRENCHING. HE RETURNED TO BOCA 5 YRS LATER. I RAN TO HIM OF COURSE WITH OPEN ARMS. AND I KNEW -- FIRST THING AFTER HUGS WAS -- YOU HAVE TO GET OFF OF H. I THINK I WAS READY. NOTE: FOR THE FIRST 3 YRS OF BEING ON H, I WENT WKLY. AFTER 1 YR MY FAV ONC SAID, THEY'VE DONE STUDIES IN FRANCE AND YOU CAN GET TRIPLE THE DOSAGE EV 3 WKS. VERYYYY TEMPTING, BUT NO. I'LL WAIT. I WAITED 2 YRS TO MAKE SURE EVERY ONE OVER THERE WAS STILL ALIVE. THEN I GRADUATED TO EV 3 WKS FOR 7 MORE YRS. I AM CAUTIOUS!!!!! I STOPPED H IN JULY '08. I WAS GETTING SCANS AT THAT POINT EV 6 MNTHS. LAST YR I GRADUATED TO ANNUALLY. MY EV 3 MNTH BLOOD WORK BECAME EV 6 MNTHS. IT WAS SCARY, I'M NOT GOING TO LIE. BUT I MOVED FORWARD WITH A DEGREE OF COMFORT. I SEE MY ONC EV 6 MNTHS. I GET A SONO W/MY ANNUAL MAMMO (UNILATERAL), WHICH STILL BEFUDDLES ME. I THINK OF MY LEFT BREAST AS MY LEFT BREAST. THE MEDICAL WORLD SEES IT AS A STOMACH I SUPPOSE, AS THAT IS FROM WHERE IT CAME (TRAM FLAP). I SAID TO MY HUSBAND, IF I WERE TO GOD-FORBID GET CANCER THERE -- WOULD IT BE STOMACH CANCER??? WE LAUGHED. WE MUST KEEP LAUGHING... AFTER H THE BIGGEST PERK WAS UNEXPECTED. I WAS SOOOO ACCUSTOMED TO GOING EV 3 WKS (ALWAYS BROUGHT BAGELS FOR EVERYONE W/CREAM CHEESE, THEY LOOKED FORWARD SO TO MY VISITS!!) THE BREAK FROM SEMI LIVING IN THE CHEMO ROOM WAS EXHILERATING. I HADN'T REALIZED WHAT A TREMENDOUS PSYCHOLOGICAL TOLL THAT FAMILIAR TRIP WAS TAKING ON MY PSYCHE. FINALLY, A REAL VACAY!!!!!! THIS IS WHAT I PRAY FOR FOR EVERY ONE OF MY SISTERS. I DO MY SUPPLEMENTS TWICE A DAY, EVERY SINGLE DAY, SINCE OCTOBER OF '98. FOR ALL THE REASONS I MENTION IN MY THREAD -- WHY I TAKE SUPPLEMENTS, IF YOU'RE INTERESTED. I MEDITATE. EVERY DAY. MY FINGERNAILS WERE AWFUL ON H. MY ENERGY IMPROVED OFF H, BUT I SUPPLEMENT. (I TAKE POWDER FOR CHRONIC FATIGUE AND B-12 SUBLINGUALLY EVERY DAY, PLUS, PLUS, PLUS...) THE NEUROPATHY I HAD WAS TRULY PAINFUL BUT THAT STOPPED WHEN I STOPPED TAXOTERE. EVERY BODY IS DIFFERENT. EVERY CANCER IS DIFFERENT. EVERY REACTION TO MEDS IS DIFFERENT. I FERVENTLY PRAY YOU EACH FIND YOUR PERFECT RECIPE FOR SUCCESS. WITH ALL MY HEART, THAT IS WHAT I WISH FOR YOU. SO THIS JULY WILL BE 5 YRS OFF OF H. I SERIOUSLY BOUGHT A SMALL PEWTER FIGURINE, ON BENDED KNEES, ARMS OUTSTRETCHED, PALMS DOWN, FOREHEAD TO THE GROUND -- TO REMIND EVERY SINGLE DAY -- TO LOOK UP AND SAY THANK YOU. THANK YOU FOR MY LIFE. SENDING BLESSINGS AND HEALING LOVE AND LIGHT TO EACH AND EVERY ONE OF YOU... 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...