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Re: Has anyone been on TDM-1 for more than 2 years?
I've been on T-DM1 for 3 years now on the Emilia trial. Great to hear Kathy that you've been on it for 4 years! I'm the longest running patient at my hospital, so it's great to hear others have been on it for longer! I'm questioning if my side effects have been increasing lately. Usually I just have dry mouth and occasional tingling in 1 finger, but lately I've been having slight nausea for 2 days, and loose bowel movements for several days after. I am on the first dose reduction, as I had really high liver enzymes with the max dose. I'd be nervous to go off of T-DM1, as Herceptin alone stopped working for me (although it did work by itself initially for 2.5 years).
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diagnosed April, 2007, age 36 - stage IV, mets to liver; ER+ (slightly), PR-, HER2+
MRM April 26, 2007
started chemo May 25, 2007 - Taxotere and Herceptin
finished chemo Oct 2007, continue on Herceptin for life, also on Tamoxifen
MRI in Jan 2008 shows no evidence of cancer in liver - NED!!
recurrence in left axilla nodes April 2010
now highly ER+, still HER2+
oophorectomy July 2010
start TDM1 (Emilia) trial Sept 2010
it's working!! can still palpate small node in axilla, but remain NED everywhere else
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