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Old 06-22-2010, 12:43 PM   #4
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: Help I am a nurse and know too much

Of course your are nervous about your daughter in law's prognosis. Having a medical background you are well acquainted with the statistics (although for Her2+ breast cancer they have changed quite a bit in the last 15 years).

However, you also know that while the disease is not yet curable, it IS treatable and that response and prognosis is a very individual thing, not a statistical thing. This is what I was told by my 2 OUTSTANDING oncologists.

As a person living with stage iv breast cancer (and initial mets diagnosis of extensive liver mets), I also sometimes feel like I "know too much", yet I also feel that part of surviving and living with this disease is maintaining hope.

I have had great doctors, I mean REALLY great oncologists - people who definitely know more than I do.

One of the greatest gifts they've given me is permission to have hope. If not for a cure, at least hope that there are treatments that can work well and for a long time. Maybe long enough for the cure that I increasingly hear top researchers talking about - right out loud.

It's ok to have hope. Doctors and nurses sometimes worry about giving "false hope". But even worse is "false despair". There is reason to have hope - the treatment plan she is on is a great one, and there are lots more weapons in the arsenal. Look at my signature, or even better, StephN's. There is hope.

Expecting to live forever is not realistic. Expecting the current treatment to work and to have the possibility of many good years ahead is realistic. And who know what the future may bring.

I would be happy to talk with her or help in any way.

Hang in there
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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