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Old 03-20-2009, 05:04 PM   #12
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Hi Missy,

Well, I know that feeling...and it sucks. For me, having it recur stole my dream that maybe I had been "cured"... I really just want to give you a big hug right now and wrap you in love.

Still, there is MUCH hope and many options for you. You've fought it before, and you will again. I can tell you are not ready to give up; please also try not to lose heart.

There are many folks here living with liver mets, some who have been lucky enough to slap it down once for the long term, others who have had to slap it again...and again...and again.

As my oncologist puts it "because you have such little disease" you have time to consider other options. It's hard for us to view anything shy of NED as "little" but the point is, if you are healthy you have more options and more time to make your decision.

If it were me, and a single liver met, I would definitely explore "local" options: RFA, Cyberknife, or resection. Get it while it's small. But I would back it up with systemic treatment, too. Resection is a pretty big deal; the others are, I understand, much more tolerable.

Lots of people have had liver mets RFA'd (Irene from Tampa is a vet), I know of one who had Cyberknife (Esther/luv2ski), and Kim in Ca had a resection (which turned out to be necrotic tissue left over after chemo). I'm sure any of them would share their experience.

I've been in a T-DM1 trial for just over a year, and have had really good results. In fact, I think I've been NED since about October but I don't want to jinx it!

This might be something you'd want to consider. T-DM1 is a conjugate with a really potent toxin linked to herceptin. It works like a "smart bomb", using the herceptin to deliver the toxin directly to the cancer cells. There is currently a Phase III trial recruiting for 2nd line therapy - if you've had a taxane+herceptin you may qualify. It's a randomized trial, the other arm is Tykerb/Xeloda which would also be a valid option. And either of those options are pretty well tolerated (except by the cancer which doesn't like 'em one bit).

Here's a link to the trial; don't believe the list of trial locations, they add new ones constantly.
http://www.clinicaltrials.gov/ct2/sh...mcc-dm1&rank=3

All that said, the standard options (systemic treatments) are also very good options. I don't know about Navelbine, except that lots of people do well with it; there's also all the others...just be sure you have a Her2 targeted agent in the mix, either Herceptin or Tyerkb. Even if your cancer progressed while on Herceptin, you still get synergy by adding it to chemo.

I know this is a scary and difficult time. Since I can't do anything more than a cyber hug, be sure you collect real ones from your hubby and 2 kids and let them totally wrap their love around you, and each other.

Then get back in the race...

Much love
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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