HonCode

Go Back   HER2 Support Group Forums > Herceptin / Tykerb
Register Gallery FAQ Members List Calendar Today's Posts

Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb

Reply
 
Thread Tools Display Modes
Old 07-17-2007, 11:31 AM   #1
astrid
Senior Member
 
astrid's Avatar
 
Join Date: Jun 2006
Location: Central North Carolina, USA
Posts: 112
Flushed Tamoxifen down the toilet

Andi, I see you said Flushed Tamoxifen down the toilet. Do you think it hurt you more than helped you?? I have spoken to my ONC about my tamoxifen concerns, but she feels it is the standard of care for pre menopausal women. I signed up for a study for pre menopausal women. The arm I got was tamoxifen alone. I feel good, so I hate to screw with it. I am only 17% ER and PR + and HER2 + 3.2.
__________________
DX 11/14/05, Stage 1C, Her2+ 3.4, ER+, PR+, K167 23%, Node Negative, MX0, Grade 3, 1.8CM, Lumpectomy 12/7/05; 6 rounds dense dose Taxol bi-weekly, 35 radiation, 1 year Herceptin, & Tamoxifen ongoing.
astrid is offline   Reply With Quote
Old 07-17-2007, 12:23 PM   #2
Andrea Barnett Budin
Senior Member
 
Andrea Barnett Budin's Avatar
 
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
Wink Flushing Tamoxifen

Hi Astrid,

July '95 was old school, different vocabulary and testing. I was ER/PR -- borderline. So what does that mean?, I asked. It means we can try you on Tamoxifen, in the hopes that you will derive some benefit from it. I was 50 yrs old and postmenopausal (after 10 yrs of perimenopause, irregular periods after being ev 28 days betw 10AM and 11AM all my life, practically hemoraghing when I got my period and having it for 10-14 days + hot flashing all day).

My dear, longtime friend Rochelle was dx 4 mnths after me. IDC. ER/PR+. After chemo she was put on Tamoxifen.

In Aug. '98 when I metastasized into liver I was found to be ER/PR- and told to flush Tamoxifen down the toilet. That it could have caused me to recur. I was also at that time, after *asking* to be tested for HER2, hoping to get in to a Herceptin trial if + as it was not yet available to the public -- I was found to be HER+ 80%, as they then put it.

Herceptin was fast-tracked by the FDA for the aggressive Her2's who were in a *lottery system* to try and get the drug and save their lives.
It became available to all Sept 28, 1998. I began taking it, in addition to Taxotere started in early Sept as I could not wait to get in to a trial w/fast growing tumors within wks after biopsy, in Nov '98 and have remained on it -- to prevent the aggressive gene from overproduces, keeping it in line and me STABLE (since '99). I believe going off Vit H would mean I'd have many recurrences to deal w, w/chemo + Herceptin to keep on fighting. Staying on the *easy* chemo, Herceptin (which is a monoclonal antibody) is the path I'm sticking w/. My oncs all concur. My insur co is not complaining. My ECHOs keep me informed re any heart problems. Dr. Pegram told me in Feb '06 out in Calif that if I was going to have heart problems they would have already shown up.

Hope this answers your questions and concerns, Astrid. If I can add anything, just ask. I am here for you, and any one who is in need of information, support and/or inspiration. Sending you loving energy...
ANDI

BTW, Rochelle remained on Tamoxifen for 6 yrs, not willing to give it up at 5, believing it was keeping her alive and well. Has now been off it 6 yrs and no recurrence.

Two different situations. She was lucky Tamoxifen could work for her. Though HER2 is highly aggressive, it is a form of bc that is responsible for 20% of bc. Knowing what causes my bc is a +. Because they've isolated the gene and developed a targeted med (Herceptin) to prevent the defective gene to misbehave. It's the good news and bad news all rolled in to one. But I am grateful for the Herceptin smart bomb with each new day. I personally hugged Dr. Dennis Slamon and thanked him for saving my life. Wow! Was that a thrilling day! For me and for him. He was elated meeting me, seeing the fruits of his labor.
__________________
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...
Andrea Barnett Budin is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 07:19 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter