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Old 01-29-2013, 02:58 PM   #2
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: starting T-DM1 - what to expect?

I was on TDM1 for over 3 years. Side effects for me were mainly flu-like symptoms that night and next day (mild fever, achy) and it did a number on my liver enzymes and platelets but those were not symptomatic. A couple days after my first infusion I had pain at tumor site which for me was a welcome sign that it was working.

To be honest, other than being knocked out the night of infusion (which actually worked out great because I could board a red-eye flight somewhere crazy and actually sleep on the flight!), I felt great on TDM1. Worked VERY full time, vacationed, was totally "normal".

After TDM1 I've had a horrible time with xeloda, taxol, you name it. So in my experience TDM1 was a dream.

Hope it will be so for you as well.
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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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