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Old 08-14-2010, 11:23 AM   #13
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: 32 year old w/ HER2+++/Mitral Valve Prolapse & Herceptin???

Hi,
Sorry I was intending to respond you your post yesterday but as you know we are all in shock right now. I'm glad I found your post again! It's draining to have bad news just keep unfolding...but try to think of it as just information that will help you make your moves. The uncertainty of not knowing is worse.

It sounds like you have found excellent medical support and that you feel confident in their opinions and care. That is really important. The biopsy is not a fun procedure but is necessary so that you know what you are dealing with, especially with so much other information that you feel is inconsistent (CTC).

The good news is, the blood test indicates your wife's liver is functioning just fine. It is a remarkable organ and the only one that has the ability to regenerate itself.

I agree that IF it turns out to be a liver met, you should investigate local treatment options such as RFA which is minimally invasive and can have great results. Whether that is an option also depends on where it is located but with a single lesion it's often an option.

I know this must all seem terribly overwhelming. That's only because it is overwhelming. But don't forget what a powerful force of nature your wife is - especially with you as the wind beneath her wings. Amazing how I know this even though I have never met her, isn't it?

I wanted to respond to you as a person who was diagnosed with extensive liver mets. My "canceer resume" is below. But you should know that I only trot that out for the cancer community.

In the real world, I live my life. I work full time at a job I love, I've been able to be there for really important times in the lives of my family, and traveled all over the world. In between that, I deal with cancer. Last year I celebrated a birthday that I absolutely KNEW I would not see...so much for knowing the future, eh?

I just want you to know that there is much reason to be hopeful. There are many treatment options and more on the way; science is moving very fast. Just take it one step at a time.

Do not lose heart.

Much love,
Chris
__________________
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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