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Thanks for everyone's kind words of encouragement! It seems almost surreal to me that this spot has been lurking in there this whole time. On several occassions, I have asked about why the spot still looks like tumor on the MRI but wasn't showing up on the PET. He always said "It could be, but let's hope it's not". Apparantly it's hard to tell?
So I have concerns about periodic brain scans. He says no, I say why no do them like once a year? Any time I get a cold or get off-balance, I worry. I get so much dizzier than I used to. I can spin around once, and feel like it was four times. When I am tired, my eyes almost seem to cross. I'm only 32... Does that seem weird or more like my panicing over every little thing?
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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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