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Re: Asked why I am stage IV again - clearing up??
I was originally diagnosed in 2006 and then had a recurrence in 2010. I have been on Herceptin every 3 week for almost 5 years now and am still NED. If they can get you into remission, which seems quite likely, you might want or need to continue on the Herceptin indefinitely. It's not too bad as far as side effects and seems to be less of an issue the longer I am on it. I was originally stage IIB. Stage makes us feel better but the main thing is what type of response your body has to the treatment.
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Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.
Debbie K
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