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Andrea Barnett Budin · 09-18-2007, 09:21 AM

Barbara, I think it fabulous that you are doing so well. Stay NED.

I just wanted to add an interesting caveat here. I saw Pegram in Feb '06. Perhaps because of my feeling that Herceptin is like insulin for a diabetic, and I would feel most uncomfortable having it taken away, here is his response to my question to him re staying on H. (I also read an interview I googled from some Med Journal that stated the same thing.)

As long as you can psychologically, physically and financially afford to remain on H -- that is what I think you should do. Paul was w/me and we both heard this loud and clear, as I was considering stopping. Tempting though it is, I am sticking w/the program. I have not had a met since being on it (in '98). Have been on Vit H ever since, NED. Something to consider. I guess it's a personal choice to a large degree. I also checked w/3 other oncs on this and this concurred -- if it isn't broken, don't fix it...
Andi

09-18-2007, 09:21 AM	#16
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	Longterm Vit H Barbara, I think it fabulous that you are doing so well. Stay NED. I just wanted to add an interesting caveat here. I saw Pegram in Feb '06. Perhaps because of my feeling that Herceptin is like insulin for a diabetic, and I would feel most uncomfortable having it taken away, here is his response to my question to him re staying on H. (I also read an interview I googled from some Med Journal that stated the same thing.) As long as you can psychologically, physically and financially afford to remain on H -- that is what I think you should do. Paul was w/me and we both heard this loud and clear, as I was considering stopping. Tempting though it is, I am sticking w/the program. I have not had a met since being on it (in '98). Have been on Vit H ever since, NED. Something to consider. I guess it's a personal choice to a large degree. I also checked w/3 other oncs on this and this concurred -- if it isn't broken, don't fix it... 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...