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Old 01-06-2009, 01:10 PM   #1
julierene
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Join Date: Dec 2005
Location: Illinois
Posts: 327
Unhappy Tykerb stopped working

So I haven't updated everyone in a while. I got back to Texas, found a good job, and started dating a great guy...

thing is... my liver and bone mets aren't responding to treatment. This is like my 3rd round with NED, now I can't get NED. It seems like I'm not even getting any relief of my symptoms after they just switched me to Herceptin/Navelbine. I feel like someone is stabbing my back and my insides. I'm starting to get scared that this is the calm before the storm.

Since September, I went from Tykerb alone to Tykerb/Xeloda (progression), Tykerb/Gemzar (progression), Herceptin/Navelbine (feels like progression). If they don't hurry up and find a good combo, I won't be able to walk any more. It always seems like we get everything going just right, and then cancer kills ya. I'm so ready to have this stuff get beat back again! I need some real encouragement with people who HAVE BEEN THERE! and I know I am in the right place.

Love, Julie
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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