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Old 11-07-2009, 12:15 PM   #17
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: Trt stopped, & now a wheelchair & walker...

Hmmm....

Not a doctor of course...but it seems you are walking a tightrope for sure. I think I have to line up with Pam on this - both in terms of "being an expert at nothing" and thinking to get the surgery over with first.

My thought would be to try and maintain - hold things stable - maybe with the Herceptin/Zometa/Tykerb or somethin else "gentle" long enough to have the surgery, then follow with the chemo. You do not have to slam the cancer into remission right now - just slow/stop the growth for the time being.

If you can get the surgery behind you, you can go full bore with the systemic treatment. If you go full bore with the systemic treatment now, that could complicate or delay the surgery.

Lani's point is well taken on why the surgery would be dangerous if you are on a carpet-bombing therapy. However TDM1 DOES impact platelet counts, so might not be advisable before surgery - even if it were allowed by trial protocol (which I doubt).

I also think you are entitled to understand the reasons behind your doctors decision to prioritize the surgery. They are YOUR team, they are working for you and I do believe they are trying to do what they think is best for you. In the end, the decision should be yours, not theirs, so you need to understand why they are recommending what they are.

Chelee, I know this is a really complicated set of circumstances you are trying to navigate - and I really admire your strength and determination. You are a fighter and I'll bet 6 months from now you'll look back at these rough waters and say "WHEW - I didn't think I'd get through THAT - but I did" and you'll keep on paddling forward.

Stay strong...
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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