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Old 06-02-2007, 02:47 PM   #1
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
Wink To Stay Or Go W/herceptin

Chelee and all my Sisters, I have previously posted re this topic but I don't know if it got lost in the recent shuffle/hijacking.

I have 5 oncs. All brilliant. All add something diff to the mix. I treasure ea ones' opinion. 1 doc "suggested" I might want to go off. I questioned the wisdom. He said I could always return to Herceptin. I know, BUT... Would I also have to do another chemo round? No, thank you very much. And take the chances of having another met. I spent a day calling ev bc org for info. All returned my call within the hr or later in the day WITH APOLOGIES for taking so long. I called Slamon's office. They referred me to a UCLA research group and they gave me a med jrnl interview w/Pegram (who was also part of the team that developed Herceptin). I also went to see Pegram when visiting my dghtr in Ca 2/06. Bottom line -- as long as you aren't having adverse effects (and if you were to have heart prob they'd have shown already -- since starting in '98, if you are psychologically willing to continue, if the insur co isn't giving you grief -- mine has not in all these yrs -- then stay w/it. Don't take the chance of going off). 2 other oncs of mine said the same. So I remain w/it. I started w/ev wk, and decided I could LIVE w/that plan. My husband Paul goes w/me ev time, God love him! In '01 I switched to the ev 3 wk plan and that has been like a party. Red rash on declotee area and upper arms, does NOT itch, but would like it not to be there -- no big deal. Had tram flap reconst and am glad for somethin I can call a breast.

Let us know what your docs say re Hercep. My personal opinion, and I am not a med prof, but like all you incred ladies -- I am a prof patient and a well-informed one at that, dotting all the i's and crossing all the t's, overseeing every step my docs and their staff take (or don't take) -- I say -- IF I WERE I DIABETIC, WOULD YOU CONSIDER STOPPING THE INSULIN? I have high bld press and a choles issue and have meds for those. I would freak out if I had to go without them. They keep me well, in the normal range and free to LIVE, happy, healthy and enjoying my 5 grandchild! Had 0 in '95. Now look where I am!

Sending loving energy your way, my special Soul sisters all... ANDI
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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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