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Hi there, that is really weird, how long do they consider long term?I think I must be the same as you, my IBC is invasive though with involment in lymph glands and skin mets, had a radial mastectomy in 1998 with 16 out of 16 gland all positive no clear margin and not hormone responsive. I have been on Herceptin for as long as I have been on this site, I think about 3 years +. I must be a freak because October 2003 I had heart failure in 3 valves, my heart ws pumping backwards and I was on death's door but my left ventricle was not effected and the heart failure was from thyroid treatment, a simple treatment like that was deadlier for me than the Herceptin, I resumed it as soon as I was able to when leaving hospital so in total I was off it for about 5 weeks but I was on triple doses every 3 weeks. I believe that the Herceptin for me has prevented the cells getting past the lymph glands and only remains in the skin tissue and the glands, well that is what I am hoping and praying is happening. I am now NED and my echo in November said my heart was smaller and was stronger and better than the previous echo 3 months earlier with no leaking valves to speak of, now I have to work at remaining NED.
Love & Hugs Lyn
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