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Andrea Barnett Budin · 06-24-2007, 02:28 PM

Hi Sue and Kevin and all! You can read my signature for details of my tale. Been on Herceptin since '98! No joint pain. Get Herceptin diluted in 500 ccs saline (vs 250 ccs as recommendation for infustion). Think it helps a lot! Get it over 1/2 hr. DO take Flexoral (a muscle relaxant at night) for whatever that's worth. No aches or pains. Fatigue, but now have 2 supplements I've posted (maybe in chemobrain) for ENERGY that have kicked in. Had Vit H wkly '98-01, then switched to ev 3 wks. PARTY TIME. I can do this. I believe it is keeping me NED/STABLE.

Going for scans Thurs. Chest/abd/pelv. Mammog normal as of a few wks ago.

OH -- I used to get lidocaine like spray for port, then 2 different nurses told me they don't like to use it as it is an invitation for bacteria to invade. We NEVER want our port to become infected and travel throughout our body! So I stopped the lidocaine. Took 2 independent chemo nurses opinions and observations as a sign from the Universe. I'm very protective of my port.

In fact, I mentioned the other day that I get "contrast" for scans in port and the nurses were shocked. Too thick, could CLOG it up. I'd do 2 salines. I said that's what they do. And then heplock.

Don't know what to do Thurs. All these yrs of scans w/port use. Lousy veins. Many punctures till they get in and the vein doesn't collapse and/or roll over. WHAT DO YOU EXPERTS HAVE TO SAY RE CONTRAST AND PORTS??????? Love networking, don't you?! With all these mavens, professional proactive patients, wonderful Warrior Women. Love you all my Soul Sisters... ANDI

06-24-2007, 02:28 PM	#6
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	Long Term Herceptin Hi Sue and Kevin and all! You can read my signature for details of my tale. Been on Herceptin since '98! No joint pain. Get Herceptin diluted in 500 ccs saline (vs 250 ccs as recommendation for infustion). Think it helps a lot! Get it over 1/2 hr. DO take Flexoral (a muscle relaxant at night) for whatever that's worth. No aches or pains. Fatigue, but now have 2 supplements I've posted (maybe in chemobrain) for ENERGY that have kicked in. Had Vit H wkly '98-01, then switched to ev 3 wks. PARTY TIME. I can do this. I believe it is keeping me NED/STABLE. Going for scans Thurs. Chest/abd/pelv. Mammog normal as of a few wks ago. OH -- I used to get lidocaine like spray for port, then 2 different nurses told me they don't like to use it as it is an invitation for bacteria to invade. We NEVER want our port to become infected and travel throughout our body! So I stopped the lidocaine. Took 2 independent chemo nurses opinions and observations as a sign from the Universe. I'm very protective of my port. In fact, I mentioned the other day that I get "contrast" for scans in port and the nurses were shocked. Too thick, could CLOG it up. I'd do 2 salines. I said that's what they do. And then heplock. Don't know what to do Thurs. All these yrs of scans w/port use. Lousy veins. Many punctures till they get in and the vein doesn't collapse and/or roll over. WHAT DO YOU EXPERTS HAVE TO SAY RE CONTRAST AND PORTS??????? Love networking, don't you?! With all these mavens, professional proactive patients, wonderful Warrior Women. Love you all my Soul Sisters... 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...