HER2 Support Group Forums - View Single Post - Am I the only cynic re drug companies and cancer?

Andrea Barnett Budin · 06-04-2007, 02:26 PM

Dx in '95. Knew nothing about bc but would do mammog and mnthly self-exam lookingfor a pea, a marble. Noticed a general hardness in my breast and questioned it. Moved annual up. You can read my signature for details. '98 when I found that I had liver mets (w/3 very slightly elevated liver enzyme bld tests over 6+ mnths) I asked for liver sonogram. They gave me abd sono and radiol apologized but sent me for CT scan, couldn't be sure what he was looking at. Multiple lesions in liver. Biop -- malig. My husband Paul and I had been reading everything we could get our hands on re bc. Aug '98, as dx, I asked for a HER2 test. All very new. Herceptin in clinical trials. Women being dx w/3 mnths to live and Her2+ denied drug. There was a lottery! If you were lucky you could get the limited supply of the drug. Otherwise...

I tried to get into a trial but failed because of Adria, disqualified. Needed to get on chemo fast, I was told. Subsequent tests showed fast progression in wks. LUCKY I questioned this consistently slightly elevated liver enz thing. Ev day counts w/ca. It doubles and redoubles and so on, exponentially... My Her2 was totally out of control. BUT FDA fast-tracked the drug. Made the news around Sep 28, '98. I was put on Taxotere, considering it to be the most aggressive weapon they had in their arsenal for a highly aggressive ca in Sept, failing to qualify for the trial. Turns out, I LUCKED OUT again. Started Herceptin after first CT scans to be sure Taxotere was working. Tk 9 mnths but it did the job. Radiol saw only the dead remains of tumors, cyst-like, filled w/fluid. No more Taxotere, as I was a mess from it, w/ev possible side effect, much pain, black falling off nails, burning soles, faucet of drippy water from eyes and nose, could barely speak. No reason to believe Herceptin can't keep you STABLE, oncs said. So, been on Herceptin since '98. Would not give it up any more than if I were taking insulin for diabetes. It keeps my defective gene from overexpressing itself. Talk about being in the right place at the right time. I thank God ev day, for the gift of ea day. Sending loving energy to all... ANDI

06-04-2007, 02:26 PM	#12
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	The Story Of Herceptin Dx in '95. Knew nothing about bc but would do mammog and mnthly self-exam lookingfor a pea, a marble. Noticed a general hardness in my breast and questioned it. Moved annual up. You can read my signature for details. '98 when I found that I had liver mets (w/3 very slightly elevated liver enzyme bld tests over 6+ mnths) I asked for liver sonogram. They gave me abd sono and radiol apologized but sent me for CT scan, couldn't be sure what he was looking at. Multiple lesions in liver. Biop -- malig. My husband Paul and I had been reading everything we could get our hands on re bc. Aug '98, as dx, I asked for a HER2 test. All very new. Herceptin in clinical trials. Women being dx w/3 mnths to live and Her2+ denied drug. There was a lottery! If you were lucky you could get the limited supply of the drug. Otherwise... I tried to get into a trial but failed because of Adria, disqualified. Needed to get on chemo fast, I was told. Subsequent tests showed fast progression in wks. LUCKY I questioned this consistently slightly elevated liver enz thing. Ev day counts w/ca. It doubles and redoubles and so on, exponentially... My Her2 was totally out of control. BUT FDA fast-tracked the drug. Made the news around Sep 28, '98. I was put on Taxotere, considering it to be the most aggressive weapon they had in their arsenal for a highly aggressive ca in Sept, failing to qualify for the trial. Turns out, I LUCKED OUT again. Started Herceptin after first CT scans to be sure Taxotere was working. Tk 9 mnths but it did the job. Radiol saw only the dead remains of tumors, cyst-like, filled w/fluid. No more Taxotere, as I was a mess from it, w/ev possible side effect, much pain, black falling off nails, burning soles, faucet of drippy water from eyes and nose, could barely speak. No reason to believe Herceptin can't keep you STABLE, oncs said. So, been on Herceptin since '98. Would not give it up any more than if I were taking insulin for diabetes. It keeps my defective gene from overexpressing itself. Talk about being in the right place at the right time. I thank God ev day, for the gift of ea day. Sending loving energy to all... 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...