HER2 Support Group Forums - View Single Post - On Herceptin for more than a year

Andrea Barnett Budin · 06-14-2007, 02:00 PM

WHY STAY ON HERCEPTIN? Excellent question! One I've investigated pretty thoroughly. Hope y'all will see that thread (or go to SEARCH above, click and type it in for direction). I believe if can, stay on, as do my 4 oncs, plus Pegram in L.A. IS IT TRUE PEGRAM IS COMING TO FLA? "My" side of the country? Any one have specifics on that. I've called and get nothing definite yet, call back in 2 wks.

EJECTION FRACTION... My NY onc/nutition and supplement expert told me to talk PERFUSIA-SR (arginine 350 mg) daily and my EF will stay up! By THORNE (vegetarian capsule). He's fussy about quality, so sometimes I pay more, using him as a guide who knows his stuff. He makes nothing from my purchases. My husband uses Vitacost usually, but if you can't find it on the web, email me and I'll give you a # of a NY apothecary that ships anywhere immediately. That's my back up plan.

I know some who have had to go off Vit H because EF in their Echo. They were anxious and stressed. I felt so badly. I'd be scared to, as I believe it is keeping me alive. Kind of like when I recurred and was on Taxotere and then got shingles and was told NO CHEMO W/SHINGLES. So I made up my mind I was going to skip as fast as I could, kind of running for my life, and get over that damn agonizing ailment in a NY minute. I had it for 10 days, using supplements along w/Valtrex (which is what they gave you in '98). When I returned to the onc he asked how I was doing. I'm cured I said. He smiled. And laughed. Let me see. I lifted my shirt. He walked all around me nodding and saying YOU'RE RIGHT! Ok then, you can have chemo today! HOORAY, I CAN HAVE CHEMO I thought, bemused to myself. Such an odd thought. But I knew it would save me.

My son-in-law (OB/GYN) Harvey says I'm not bc -- I'M bcs. I don't know exactly when I decided to start calling myself a Survivor, but I thought it from day 1! Sending loving, healing energy to all my wonderful Soul Sisters, as always... ANDI

06-14-2007, 02:00 PM	#7
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	Why Stay On Herceptin WHY STAY ON HERCEPTIN? Excellent question! One I've investigated pretty thoroughly. Hope y'all will see that thread (or go to SEARCH above, click and type it in for direction). I believe if can, stay on, as do my 4 oncs, plus Pegram in L.A. IS IT TRUE PEGRAM IS COMING TO FLA? "My" side of the country? Any one have specifics on that. I've called and get nothing definite yet, call back in 2 wks. EJECTION FRACTION... My NY onc/nutition and supplement expert told me to talk PERFUSIA-SR (arginine 350 mg) daily and my EF will stay up! By THORNE (vegetarian capsule). He's fussy about quality, so sometimes I pay more, using him as a guide who knows his stuff. He makes nothing from my purchases. My husband uses Vitacost usually, but if you can't find it on the web, email me and I'll give you a # of a NY apothecary that ships anywhere immediately. That's my back up plan. I know some who have had to go off Vit H because EF in their Echo. They were anxious and stressed. I felt so badly. I'd be scared to, as I believe it is keeping me alive. Kind of like when I recurred and was on Taxotere and then got shingles and was told NO CHEMO W/SHINGLES. So I made up my mind I was going to skip as fast as I could, kind of running for my life, and get over that damn agonizing ailment in a NY minute. I had it for 10 days, using supplements along w/Valtrex (which is what they gave you in '98). When I returned to the onc he asked how I was doing. I'm cured I said. He smiled. And laughed. Let me see. I lifted my shirt. He walked all around me nodding and saying YOU'RE RIGHT! Ok then, you can have chemo today! HOORAY, I CAN HAVE CHEMO I thought, bemused to myself. Such an odd thought. But I knew it would save me. My son-in-law (OB/GYN) Harvey says I'm not bc -- I'M bcs. I don't know exactly when I decided to start calling myself a Survivor, but I thought it from day 1! Sending loving, healing energy to all my wonderful Soul Sisters, as always... 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...