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Old 02-15-2010, 11:55 AM   #6
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: Long term survivors

Hi Skip and Florence,

Ha ha, I'm a blabbermouth without borders - I'll read and respond regardless of where you post!

I think I know how Florence feels. I felt exactly the same way when I was diagnosed with "extensive" liver mets. I remember reading (outdated) stats and quoting my husband the average of 18 months. I thought if I fought really hard, I might double that.

Lucky for me I had great oncologists who still haven't given me an expiration date, 5 1/2 years later. They told me then that they were starting to look at it as a chronic condition that for some people could be managed for a long time much like diabetes.

This is becoming increasingly the case with Her2+ BC, and since then I even hear CREDIBLE rumors of cure more frequently.

I've lived most of that time (after the initial 6 cycles of chemo) like a pretty much normal person - with maybe a greater appreciation for the miracle. Although I've had a couple of recurrences, I'm currently well into my second round of "no evidence of disease". While I hope it will last forever, if I have to suit up again with a different weapon, so be it.

I look at Florence's current "stats" and see clean, clean, clean, oh, some liver mets -well let's whack them with chemo and see how they like that.

Everyone who has posted so far is right. The chemo can work. It's possible for the disease to be managed. You can live life and fight cancer at the same time. And it is definitely a mind game.

You guys can do it, and like Flori, I'd be happy to talk anytime.

It takes time to adjust, so be gentle with yourselves. At our first visit to my best oncologist, my husband asked "how do people live (cope emotionally) with this????" Her answer was: "You just do". Simple, but not so easy, huh?

But she was right too.
__________________
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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