• Has anyone taken TDM1 and if so I would like to know what side affects that you had. Thanks

    Asked by Risa on Tuesday, June 11, 2013

    Has anyone taken TDM1 and if so I would like to know what side affects that you had. Thanks

    5 Answers from the Community

    5 answers
    • Lindy's Avatar

      Not yet, some gals on the Inspire site have. If none of our folks have that information you might check there.

      over 3 years ago
    • princess123's Avatar

      I just had my first infusion Monday. So far so side effects. I was very tired Tuesday but I've been having those kind of days lately anyway so it's hard to tell which it was. No aching like some of the ones I've been on.

      over 3 years ago
    • jad's Avatar

      I hadn't heard of this before, and went to my best friend, Google.
      Caveat: I didn't spend much time reading the full details - but as of Feb 2013, TDM1 is being use for special clinical trials, or compassionate use. It is for those who no longer respond to herceptin. I am very vague (i.e. don't know) on the details of any FDA approval process or where this drug currently stands.

      over 3 years ago
    • Ladykarla's Avatar

      Risa, look for Carm on this website. Carm knows EVERYTHING!

      over 3 years ago
    • Kerry's Avatar

      Hi Risa, I have been taking TDM1 for 2 1/2 years. Minimal side effects until recently. Lately have been experiencing bone pain and the beginnings of neuropathy in my toes. I take a very mild pain medicine as needed and it works just fine. Things I have experienced are red splotches all over my body, fatigue, shortness of breath, thinning hair, and I hear my heartbeat in my right ear all of the time. TDM1 was approved in Feb 2013 by the FDA for wide spread use. Name is now Kadcyla. I believe it has been my wonder drug.

      about 3 years ago

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