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I have wondered the same thing. I have been NED (we think) since Mar 2006. I want to try it just to see if it will do anything to that one last peice in my liver. They say they think it's necrosis... but I sure am curious. I am of the opinion that you should go for it. My past history has been of me begging for stuff and not getting it. So this time, I think I might shop around for a new Onc if he says no. In the past, I was asking for things that really weren't approved yet. So I might wait till it's approved - then do my homework, present him with my stuff, and let him decide. If he still says no, then I will probably shop for a new Oncologist. As much as I love him, I have disagreed with his conservative approach from the begining. I can't stop wondering if I had the Herceptin when he finally let me have the Taxotere - if I would have never had another occurrance. I also wonder if I should have had radiation too... I have never regretted taking anything extra. I have always regretted not taking what I really wanted to take. He was right about Herceptin and my heart... but we got it under control with Lisinopril. So his argument was pretty much invalid. What more do I have to loose? I'm already Stage 4! I already have that weight on my shoulders that IF I had pressed harder to get those drugs it might have made a difference. I don't want to be wondering things like that ever again.
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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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