HER2 Support Group Forums - View Single Post - how long is too long to wait for a trial?

Andrea Barnett Budin · 01-19-2016, 07:26 PM

Make noise!!!! Be a lady, always, but express your distress from your gut, explaining the urgency of the matter and the additional psychological suffering of waiting with cancer. Cancer grows exponentially. Get moving on this. You are a walking, living, breathing emergency.

Listen to Flori... Please... Put it in writing. Today. Make calls. Now. Get on it. Where do you live? If you had to drive a few hrs for the trial would you be willing? Able? Trials seem to move locations. One in Pa. is coming to Tampa I believe. You never know. Get on it. No one loves you more than you. If you don't speak up, who will? Offices and docs are busy. Your a name. They don't know you. Make yourself known. Please.

Sent with more love than alarm,

Andi

01-19-2016, 07:26 PM	#6
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: how long is too long to wait for a trial? Make noise!!!! Be a lady, always, but express your distress from your gut, explaining the urgency of the matter and the additional psychological suffering of waiting with cancer. Cancer grows exponentially. Get moving on this. You are a walking, living, breathing emergency. Listen to Flori... Please... Put it in writing. Today. Make calls. Now. Get on it. Where do you live? If you had to drive a few hrs for the trial would you be willing? Able? Trials seem to move locations. One in Pa. is coming to Tampa I believe. You never know. Get on it. No one loves you more than you. If you don't speak up, who will? Offices and docs are busy. Your a name. They don't know you. Make yourself known. Please. Sent with more love than alarm, 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...