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Old 05-15-2011, 07:22 PM   #21
Joan M
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Re: I Didn't Get T-DM1

Karen,

I'm sorry about the trial, but we never know how other drugs might work. Many women have become NED, and before T-DM1. Kudos to you for checking out the options and following through!

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 08-08-2011, 05:13 AM   #22
schoonder
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Re: I Didn't Get T-DM1

"I would not be able to switch over to the study drug if progression occurred. They made that clear."

Wonder if all site investigators are going by the same "game-book", reason being, in waterdreamer's "TDM-1 side effects" post she indicates that after progression on standard treatment she was switched to experimental (t-dm1) arm of trial.
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