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Old 04-29-2009, 10:03 AM   #9
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Pam,
I saw your post yesterday and your comments about how your oncologist responded to the question of "will I still be alive..." resonated with me...so much so that I had to shut down my window into Her2support.org.

First, I'm glad to hear you got GOOD news on your current therapy! We can all use more of that.

Living with stage IV is a real balancing act for me - teetering between hope, despair, a sobering knowledge of the "statistics" and a healthy state of denial - and back to hope. I really admire you for being able to think long term even while acknowledging the odds.

Still, nobody knows how much time they have. If you'd asked your oncologist back when you first had bone mets if you would still be alive TODAY, you might have gotten the same answer. I fully expected NOT to be here in 2009, yet here I am. And here you are. You just don't know. Nobody knows, it's just that we have reason to think about it.

We also have reason to think about it and then put it away. What if by some miracle we live for 26 more years but wasted it thinking about impending death? You are too much of a lover of life for that.

I think I would be best served by preparing for the worst then putting that aside and focusing on living. Not to say I have done that

Like you, I'm pretty much able to fully function. I have a job that I mostly love and which keeps me very busy. For me, the question of "should I go on disability and retire now...?" is more about what I want to be doing with my life and my time. My choice at the moment is to stay in my life as it is, although that could change.

Choosing to change my priorities and not work full time would also be a valid choice - especially if I needed that time to take care of me - body, mind or spirit.

Sometimes I feel like I should go on SSDI just because that's the only way I'll get my Social Security money - and I don't consider that taking advantage of the system at all. If you choose that route, think of it as a choice to take an early retirement.

You asked how people cope...so thanks for letting me cope out loud!

And SOOO glad about your good news!
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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