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Old 10-13-2009, 11:31 AM   #2
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: 3 years + on Herceptin, Why

Hi,

True, there is no data indicating when/if it is "safe" to discontinue Herceptin once diagnosed as Stage IV. There are several people who post here who after having been NED for years on Herceptin have stopped. They are in uncharted waters and are being monitored very closely. All of these folks were at least 7 years out although there are some who are asking this question after 4-5 years.

It is not clear to me from the stats in your signature why you are classified Stage IV. Did you have cancer spread to other places besides the axillary nodes? I see you had Pet/CT scans, maybe cancer was detected elsewhere that you did not indicate.

I guess the short answer is, most people diagnosed at Stage IV can expect to continue on Herceptin "indefinitely".

The treatment cost varies widely, and remember that most insurance co's pay much less than the original amount billed. I think mine was around $3000 every 3 weeks. Still a lot of money. However, continuing on Herceptin is standard of care, so most insurance companies pay.
__________________
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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