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Old 01-06-2009, 09:58 PM   #3
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Julie,
Sorry to hear you're in pain. And I know that must be very scary that you haven't yet found the right combo to regain control over those liver mets - but that doesn't mean it won't happen. Do not lose heart.

I don't really know what to make of the pain you're currently having - you say "feels like progression". Have you experienced similar pain due to progression in the past? Is what you're feeling now an extension or increase in pain you had prior to going on Herceptin/Navelbine? Or is it a new type of symptom since starting the new combo? Remember, "pain at tumor site" is a known possible side effect of Herceptin.

Looking at your history of therapy, it seems that you did well on Herceptin for a good amount of time, then also had a good run on Tykerb based therapy. Unless I'm reading your bio wrong, herceptin+ a chemo has not failed you in the past, what I read is that after the cancer escaped the Herceptin alone, you went on to the Tykerb regimens.

So, going back to a Herceptin/chemo therapy at this point could still work very well for you. Herceptin and Tykerb work differently as you know.

What are you able to do in terms of pain control? Are you working with a pain specialist? If you can get the symptoms managed that will help immensely.

Hang in there, sorry I don't have more to contribute - just know I'm holding you in my thoughts.

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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