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Hi Laura,
What a lot to deal with. I'm with Sandy - get a second opinion as your situation seems more complex than just "the herceptin isn't working"
It sounds to me like you maybe had an undiagnosed or fast growing 2nd primary rather than a recurrence of the original tumor which was ER-/PR-/Her2+. If I understand your posts, this "new" one is ER+ PR -. Is it Her2+?
It is unusual but not unheard of to have 2 separate BC with different pathologies. So it may be that the Herceptin IS working on the original tumor but now you have a "different" one that is not Her2+. But IS ER+ which would possibly open up other treatment options (tamoxifen, arimidex) to add to your arsenal.
A third possibility is that one mechanism of Herceptin resistance is that the ER pathways get activated and revert ER- to ER+.
Any of which means, get some additional input on this pathology and potential treatments!
This disease is a sneaky little bugger, isn't it. But we can be sneaky too.
Keep us posted on your progress.
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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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