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Old 10-18-2013, 04:09 PM   #23
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
Re: How long Should I continue herceptin ?

When I had the good fortune yrs ago to meet Dennis Slamon, while visiting Mark Pegram in Calif visiting my dghtr who lived there, I brought my file. About 8" tall...

A nurse stopped in as my husband and I were chatting with Mark, and mentioned Dr. Slamon was in the office. This was during the yrs that these partners had split, as Denny was totally into research.

I announced that I AM NOT LEAVING THIS BUILDING TILL I MEET DR. SLAMON! Everyone smiled and the nurse looked like she was on a mission. About 5 min later, a knock on the exam door and -- it was Denny.

I stood up in my 2" heels, on the step of the exam table, making me a whole lot taller than my 5'3" and Slamon walked in. After all I was a 4th stage HER2er who had received Vit H just as I'd recurred throughout my liver and had been on it for about 5 yrs then. H had been fast-tracked by the FDA 1 mnth after my recurrence. So I was among the few who could claim this.

I threw my arms around his neck, as he stood, 6 ft +++ tall in front of me. We both hugged. I found myself saying, THANK YOU. THANK YOU FOR SAVING MY LIFE. What awesome words to utter. Of course, I'd never said such a thing before ever.

He was as thrilled to meet me as I was to meet him. Paul, darling hubby, stood and they shook hands. All gleaming. Dennis announced that Mark had been a part of the team who developed H, and I belatedly thanked him as well.

We chatted for a bit. Dennis asked me if I would take part in a study they were doing of longterm survivors on H. Though I lived in Fla, I took part OF COURSE by phone, by mail, swabbing my mouth at specific times of day for days and shipping my cortisol levels to his research team.

I took several hrs of phone interviews asking all sorts of questions and had extraordinary conversations with these young women.

I had asked for the results to be sent to me.

I never received anything.

And now as I scour the Internet for info about the duration of H as recommended I basically see UNKNOWN. Some say a yr. Others 3 or 5. But I have seen some who go off at 7 and recur within 4 mnths. I'm glad I stretched it to 10 yrs. And I've been off for 5, still stable. NED.

BTW, Paul and I felt like we were walking on a cloud for the rest of that day in Calif (Santa Monica @ UCLA)! WE FELT AS IF WE'D JUST MET ELVIS! An absolutely awesome experience I will never ever forget. Nor Paul.

Paul had called Slamon when I recurred in '98. Slamon took the call and spoke to this total stranger at length, both concerned w/this man worried about his wife who had just found out she was HER2+ (80%).

We were aware of the clinical trials and the discovery of the gene and I asked to be tested in '98. They didn't test for that in '95. But the thing had been IN THE WORKS for a good 10 yrs!!!!

Maybe we shouldn't be so slow to approve drugs in America. Other countries seem to have access before we do. In '98 H was fast-tracked because women were being given 3 mnths to live and wanted to try this "new" drug that women in other countries were on!

The stringent clinical trials alone are beyond arduous and difficult to attain monetarily. H was in the 2nd phase of clinical trials when they determined FINALLY to forgo the 3rd phase and get it out there. At that time, to metastatic patients only.

Slowly over the yrs, H became available to first liners, which I believe may well have totally changed the course of many many lives profoundly.
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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