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Old 10-16-2015, 05:50 AM   #1
Lauriesh
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Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
Re: Invited to a talk by Dr Slamon.

I stopped after 4 years Ned because the side effects were just getting too much. It has only been 9 months since I stopped, but so far I'm doing ok. I have my next scan in Nov.
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diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 10-16-2015, 01:47 PM   #2
Andrea Barnett Budin
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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: Invited to a talk by Dr Slamon.

I am aware of what Steph just mentioned, which kept me to stick with the program. The side effects from H were nothing for me compared to Taxotere. And I still feel side effects from T and from the 21 lymph nodes removed from my arm to this day (17 yrs later).

I recall someone going off Vitamin H and then reducing the dosage and/or the frequency of receiving it. Some I think had saline added to H to reduce their side effects.

Think about how to make it work for you.

Still glad I did 10 yrs of H even though my onc wanted me to stop at 5. I've been off H since '08. Still stable, with some scary CTs in 2013 and this past June but -- BENIGN... Humbly grateful.

I keep talking to my body. And the Universe. HEALTHY AND WELL. NO MORE CANCER. Every day. And -- I look up about 6 x a day and say THANK YOU.
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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...
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