HER2 Support Group Forums - View Single Post

chrisy · 12-14-2008, 10:31 AM

I loved hearing the researchers discuss their work and the various things they heard. Some of the highlights heard or overheard:

"ooooh those will be great targets"

"these survival mechanisms are the achilles heel"

"I said 5 years ago we would cure Her2+cancer - and we will"

"we love it when the patient is involved! our job is to give you the best information and options...so you can decide what is the right treatment"

"in my country (switzerland), patients are not allowed at a meeting such as this" She didn't say if she thought that was a good idea or not, but she was very nice, so I think she probably appreciated having us there!

"patients don't fail drugs, drugs fail the patients" this last one was actually directed AT the researcher reporting the DM1 trial. I spoke to her later that day and after I told her I was in that trial, she started apologizing and beating herself up about using the phrase "patient failed" - for you Harry Potter fans, it reminded me of a house elf banging it's head against the wall after saying something bad about their wizard!

She was so wonderful - I just loved her and assured her that, from my perspective at least, that little semantic faux pas did not negate ANY of her great work, and to keep pushing!

I think one of the main benefits of having advocates come to meetings such as this is that we get to be face to face with each other - the patients, doctors, researchers - and get to see each other as the beautiful, dedicated people we are.

I think that everyone goes home from this event with renewed energy (after a nap, that is), renewed passion, renewed hope.

12-14-2008, 10:31 AM	#4
chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Posts: 3,207	The way researchers talk.... I loved hearing the researchers discuss their work and the various things they heard. Some of the highlights heard or overheard: "ooooh those will be great targets" "these survival mechanisms are the achilles heel" "I said 5 years ago we would cure Her2+cancer - and we will" "we love it when the patient is involved! our job is to give you the best information and options...so you can decide what is the right treatment" "in my country (switzerland), patients are not allowed at a meeting such as this" She didn't say if she thought that was a good idea or not, but she was very nice, so I think she probably appreciated having us there! "patients don't fail drugs, drugs fail the patients" this last one was actually directed AT the researcher reporting the DM1 trial. I spoke to her later that day and after I told her I was in that trial, she started apologizing and beating herself up about using the phrase "patient failed" - for you Harry Potter fans, it reminded me of a house elf banging it's head against the wall after saying something bad about their wizard! She was so wonderful - I just loved her and assured her that, from my perspective at least, that little semantic faux pas did not negate ANY of her great work, and to keep pushing! I think one of the main benefits of having advocates come to meetings such as this is that we get to be face to face with each other - the patients, doctors, researchers - and get to see each other as the beautiful, dedicated people we are. I think that everyone goes home from this event with renewed energy (after a nap, that is), renewed passion, renewed hope. __________________ Chris in Scotts Valley June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?" 9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++ 10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response! 04/05 - 4/07 Herception every 3 wks, Continue NED 04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial 06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin 01/08 Progression in liver 02/08 Begin (TDM1) trial 08/08 NED! It's Working! Continue on TDM1 02/09 Continue NED 02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED 12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver 07/11 - 11/11 Herceptin/Xeloda -not working:( 12/11 Begin MM302 Phase I trial - bust:( 03/12 3rd times the charm? AKT trial 5/12 Scan shows reduction! 7/12 More reduction!!!! 8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!) 9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3 11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc 11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go. 2/13 Gemzar/Carbo/Herceptin - no go. 3/13 TACE procedure Last edited by chrisy; 12-14-2008 at 10:39 AM..