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Andrea Barnett Budin · 11-17-2013, 05:40 PM

PHEW...!

I've read your whole thread, Caroline.

I guess my brain is slowly trying to process it all.

I'm not familiar with pretty much any of the meds you mention but for H.

I'll google and see what I come up with for you.

Interesting about the extra H making you feel better. They aren't clear on how long one should stay on, but I stuck w/it for 10 yrs, cause it made me feel okay physically and safe psychologically/emotionally. And I'm glad I made that decision without any studies to go in. Being in uncharted waters is totally not fun.

You are great about following up, and you're right it shouldn't have been "you" calling to check on those reports, but -- NO BODY LOVES YOU MORE THAN YOU. NO BODY CARES MORE ABOUT YOU THAN YOU. NO BODY WILL TAKE THE TIME TO FOLLOW UP UNLESS YOU SQUEAK AWAY A LOT AND THEN END UP DOING A LOT OF YOUR OWN LEGWORK.

Sad but true. So good for you, Caroline. I know you'll stay on top of things.

Will get back to you when I have figured out more.

I thought no one ever wrote longer posts than me!!! Well -- you win! But you have a whole lot happening and issues that are quite amazing. Am awed by your physical activity despite it all! In short --

BTW, I was on Tamoxifen when I recurred. I was considered borderline ER/PR and they were trying to give me a fighting chance. In '95 they didn't yet discuss HER2.

In '98 when I metastasized, I knew to ask for the HER2 test. And Herceptin was fast-tracked by the FDA 1 mnth after my new dx -- available then to metastatic patients. I was in the right place at the right time. Timing is everying.

Will continue to mull over your situation, Caroline.

Know lots of ladies out there are whizs about this stuff and sure hope they offer their advice.

Love,

Andi

11-17-2013, 05:40 PM	#2
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	Re: Need input PHEW...! I've read your whole thread, Caroline. I guess my brain is slowly trying to process it all. I'm not familiar with pretty much any of the meds you mention but for H. I'll google and see what I come up with for you. Interesting about the extra H making you feel better. They aren't clear on how long one should stay on, but I stuck w/it for 10 yrs, cause it made me feel okay physically and safe psychologically/emotionally. And I'm glad I made that decision without any studies to go in. Being in uncharted waters is totally not fun. You are great about following up, and you're right it shouldn't have been "you" calling to check on those reports, but -- NO BODY LOVES YOU MORE THAN YOU. NO BODY CARES MORE ABOUT YOU THAN YOU. NO BODY WILL TAKE THE TIME TO FOLLOW UP UNLESS YOU SQUEAK AWAY A LOT AND THEN END UP DOING A LOT OF YOUR OWN LEGWORK. Sad but true. So good for you, Caroline. I know you'll stay on top of things. Will get back to you when I have figured out more. I thought no one ever wrote longer posts than me!!! Well -- you win! But you have a whole lot happening and issues that are quite amazing. Am awed by your physical activity despite it all! In short -- BTW, I was on Tamoxifen when I recurred. I was considered borderline ER/PR and they were trying to give me a fighting chance. In '95 they didn't yet discuss HER2. In '98 when I metastasized, I knew to ask for the HER2 test. And Herceptin was fast-tracked by the FDA 1 mnth after my new dx -- available then to metastatic patients. I was in the right place at the right time. Timing is everying. Will continue to mull over your situation, Caroline. Know lots of ladies out there are whizs about this stuff and sure hope they offer their advice. 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...