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chrisy · 08-19-2008, 08:44 PM

I was already on a trial at UCSF (tykerb + avastin) and progressed while on that trial...just as they were about to open the Trastuzumab-MCC-DM1 trial there. So for me it was a case of being in the right place at the right time. I will say that what has helped me most is I had a "regular" follow up with my 2nd opinion guru (Dr. Rugo at UCSF) so when I needed it, I had pretty good access. That was how I came to be under her care for the tykerb/avastin trial and now the DM1 trial.

If I remember, you are in Southern California, right? I know that other DM1 trials are getting ready to open, but I don't know where.
There is also some talk about trying to reopen the one I'm in (but I don't know what the status is on that, or if it's just a rumor).

If you have a good onc in your area, ask about the trials or as runtolive suggests, contact Genentech. Do not rely on the "list of locations" because it is NOT accurate - the trial I'm in has never updated the original 40 sites even after new sites were opened.

There is a lot of interest in this new drug - so there is a good chance there may be a study near you if you should need to make a change.

And by the way, DELIGHTED to see you are "still kicking"!

08-19-2008, 08:44 PM	#6
chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Posts: 3,207	Adriana I was already on a trial at UCSF (tykerb + avastin) and progressed while on that trial...just as they were about to open the Trastuzumab-MCC-DM1 trial there. So for me it was a case of being in the right place at the right time. I will say that what has helped me most is I had a "regular" follow up with my 2nd opinion guru (Dr. Rugo at UCSF) so when I needed it, I had pretty good access. That was how I came to be under her care for the tykerb/avastin trial and now the DM1 trial. If I remember, you are in Southern California, right? I know that other DM1 trials are getting ready to open, but I don't know where. There is also some talk about trying to reopen the one I'm in (but I don't know what the status is on that, or if it's just a rumor). If you have a good onc in your area, ask about the trials or as runtolive suggests, contact Genentech. Do not rely on the "list of locations" because it is NOT accurate - the trial I'm in has never updated the original 40 sites even after new sites were opened. There is a lot of interest in this new drug - so there is a good chance there may be a study near you if you should need to make a change. And by the way, DELIGHTED to see you are "still kicking"! __________________ 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