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Old 03-05-2015, 09:34 AM   #10
Barbara H.
Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
Re: Kadcyla Side Effects

I believe that I was the first member on this website to go on the TDM-1 trial in Sept. 2007. At that time it was called Phase 1, open does escalation study of the safety and pharmacokinetics of Trastuzumab-MCC-DM!. I was originally diagnosed stage IIB or IIIA PR- in May of 1998. I did not know that I was Her2 at the time. I received AC and T and then radiation. My cancer returned in May of 2004 with a 3cm tumor to the prefrontal cortex with cancer in too many places to list. After surgery I went on Herceptin. I was NED for about a year and a half. At that point I added Navalbine. I did not care for it. By this point the cancer had spread to my bones and I eventually had hip pain. In winter of 2007 I applied for the TDM-1 trial, but I failed the Muga test. Unfortunately, later I found out that the machine was at fault. As a result, I went off all treatment hoping that I could get into another trial. Unfortunately, the HER-2 cancer in the bone continued to grow and I was in quite a bit of pain. Fortunately, the trial opened in September. It was a truly a miracle drug for me. Within two weeks I was pain free. Unfortunately, I also developed the same lung disease as you and had to go off of it after about two years. My liver tests eventually returned to normal. I also had nose bleeds and my nose ran more than usual.

I was at the Dana Farer for the entire day on my first infusion. I had chills and felt as if I had the flu after my first infusion. The problem was that I was teaching 3rd grade at the time and had to attend "Back to School Night". I had to give a speech and be with the parents for about two hours. I rested at home for about an hour. The nurses were horrified that I was going, because it was a new stage I trial and they did not know what my reaction might be.

I have been on Herceptin and Tyberb(4 tablets) since 2009 and remain in remission. I do have neuropathy, which I believe is mild. It seems to be increasing and I will probably mention it at my next appointment. I continued to teach during all of my treatments, but am now enjoying retirement since June of last year.

Barbara H.
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