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Old 04-05-2014, 04:02 PM   #15
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: Herceptin question

Fire,

I too love this blog, which I didn't have during my episode 1 & 2... my joy to share. We all learn so much from sharing.

The drippy eye thing, lol carrying tissues -- I kept mine in my bra, much to my grown dghtrs dismay. Otherwise I was clutching a tissue every waking hr and had a ziploc in my handbag filled with seriously soggy tissues to throw away. Hard eating, cutting whatever and dabbing eyes alternately. But I could spot everyone on Taxotere in the chemo room -- dabbing.


Poor nails. From Taxotere -- they turned BLACK and lifted off the nailbed. I went to top dermatologist who consulted one of his big medical journals and found that this could be a side effect. He assured me the oozy stuff was not infected. That was a relief. So I stopped wearing my rings, not wanting to draw any attention to my hands, and had manis -- w/dark red nail polish to camoflauge... Assured nail tech that my nails were not infected.

After a while I had "little girl nails" one manicurist told me. Thin and frail. So not the rest of me, too bad! They are thicker now with Deborah Lippmann Hard Rock base and top coat. But my right hand nails tend to split vertically often and I carry a file so I don't snag and make things worse.



FIRE -- I READ YOUR AVATAR! These docs who are not concerned/impressed with our lumps are regularly pushed by women like us to go further. Should not be necessary OBVIOUSLY!

With you, it reminds me of when I was in my 40s and presenting with 180 over 100 blood pressure. Docs would say, you're probably nervous. I would assure them, I was not. They'd take it again and I'd be 160 over 100. They just kept ignoring me. I was too young. Same with menopause. Hot flashing all over the place, going from every 28 days between 10 and 11 A.M. getting my period and suddenly going 6-8 wks and practically hemorrhaging uncharacteristically. Docs just kept denying I was peri-menopausal. Geez!!!!!!!!!!!!

My Dad had died of heart disease at age 63. But I was a woman. And young.

When discussing family history I'd write that my Grandmother and Aunt had bc. They'd ask -- maternal or paternal. Swear to God! I'd say paternal, and they'd wave it off. INSANITY!

Fire, ultrasound needle guided biopsy AND THEY DIDN'T BIOPSY??? Determined it looked fine???



YES WE ALL NEED A DIAGNOSTIC MAMMO. And I get a sono as well cause I was lobular and they hide. Been STABLE since '99 but -- last June -- mammo was fine BUT they found something
new with the US! Had to have a needle guided biopsy. MAN, THAT SUCKED. Really hurt. And for months afterward. Still now, I sometimes get that pain when one of my 10 lb Maltese pounce on me in bed.



Stay proactive dear Sister! Ask questions. Speak up. Be a lady, but be persistent! You too Carol Ann. And ALL of us.

Marie, I too have been doing Co Enzyme Q10 (150 mg) twice a day since 1998!!! Good for lots of things! Even gums. You are amazing. You go girl!

Had my 2nd port for 12 yrs!! When I had it removed in outpatient surgical center they asked a thousand questions and when they asked -- do you know why you are here -- I said -- to remove my 12 yr old port. She glanced up at me, looked deep into my eyes and said, I'm going to write exactly what you said. And the nurses started gathering. Asking me another thousand questions, like, Do you believe your positive attitude helped?, Do you know how amazing that is and other utterly awesome questions re mindbody and spirituality!

I left on a high for mnths!!!

BE WELL. STAY IN TOUCH. SHARE.

LOVE,
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...
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