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Old 05-07-2009, 05:26 PM   #16
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
Smile Herceptin saga -- to be continued...

Yes, Steph, it's kind of scary out here. In uncharted waters. There are no studies on people like us. Long term Vit H users, 4th stagers who have redefined our class, defying the odds.

It's not so much like my security blanket has vanished, cause I must say I LOVE MY FREEDOM! And, I have been blessed to enjoy excellent results from my every 3 month blood tests and my every 6 month CT scans.

TUMOR MARKERS HAVE TAKEN A DIVE -- DOW TO 14 from 41. We are keeping a steady eye. Will recheck in 10 days.

I just feel *untethered*. Hanging out there in a parasail, blissed out on the beauty of Life but kind of without a net. On a tightrope, hoping I don't fall. Reaching for the trapeze bar over and over and praying I don't slip.

Congratulations on your good news. Enjoy your vacation. Get strong and have fun!

Maybe our bodies have *gotten over* our dysfunction. I won't call us cured. Just a word anyway. We've gained a lot of awareness and insight, vitamin and supplemented up, learned to de-stress in our personal styles (meditation/guided imagery works for me, along w/deep breathing). Maybe our bods have learned from what H has done for us, and can carry on, on their own!

Wayyyy back in the 70s I saw a PBS special on the MINDBODY CONNECTION. Relatively unheard then, they had me from the mere suggestion of the idea. I somehow KNEW what they were studying (in prestigious universities and hospitals)was right on.

A teenage girl had some terrible disease. She could only survive on this potent concoction. The docs knew she could not remain on this drug combo for long, but wouldn't be able to live without it. She was so young, and they wanted her to live a long life.

They slowly weaned her off the drug, using an extremely pungent rose smell w/each tx. Eventually, they gave her saline along with the strong rose scent! They created a kind of conditioned reflex. And lo and behold, she continued on doing well, w/only the smell of roses!

I never forgot that. The mind/body is a fascinating reality. We must learn to own it.

Stay well. Know that I am thinking of you. Oh, and thanks for the *plug*! I really think the original LIVING WHILE WAITING thread has some provocative ideas worth reading and pondering. You not only gave it a mention, you provided the link. You clever girl you!

BTW, Steph, your not plunging into the future -- you're SOARING!


I know that I was told when I recurred, in '98, that what I had was -- "INOPERABLE, INCURABLE, AND YOU WILL BE ON LONG TERM CHEMOTHERAPY FOR THE REST OF YOUR LIFE". Devastating words to hear. Guess all I saw was that I was terminal. I expected to suffer mightily.

Much to my delight I worked my way up to the "easy" chemo -- Vit H. Got a "cautious remission" out of one of my 5 oncs and ran w/it! Got to keep my hair, after losing it twice. Had relatively few side effects.

So I am not so much done w/treatment as tentatively taking a hiatus, w/visions of permanence. Knowing well of the impermances within Life itself. Not to mention the roller coaster ride we call canserland.

If we need it, we can always return. But I sure am enjoying being on my own. I feel like THIS IS MY NOW! Just wish I could read a book about what happens next. Guess we're the ones they'll be writing about one day. I don't recall volunteering to be a guinea pig. Yet, here am I! And you!
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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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