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Carolyn,
Barbara said it well. Perfectly, actually.
It is such a challenge, threading that needle to qualify and get into trials. As if we didn't have challenges enough! It's disheartening to feel like you miss by minutes, or because of having too many, or too few, or the "wrong" treatments in the past.
I feel a window of some kind will open for you, if not with DM1 then with something else. I was at one point close to getting into a vaccine trial which required you to be NED (which I had been for 2 years). Then wham, instant progression! But that made me eligible for a trial of Tykerb/Avastin, which didn't get me back into remission but did keep me stable....for 8 months. Needless to say I was beside myself.
But the timing was such that I was able to get into the DM1 trial. In hindsight, I can see that each time a door closed, a window opened - I've even come to think of the Tykerb/Avastin trial as a cosmic placeholder for me.
I see now, that particular vaccine is entering Phase III trials (I was trying to get in the Phase I). I keep that in my future options folder...
My hope for you, for all of us really, is that you are able to get the right treatment at the right time. Don't give up, it can still happen.
Much love
Chris
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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
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