anyone here receive 2 years' worth of Herceptin?

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elmcity69
elmcity69 Member Posts: 998
anyone here receive 2 years' worth of Herceptin?

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  • elmcity69
    elmcity69 Member Posts: 998
    edited May 2011

    just wondering...my onc says 1year is standard protocol. i started another thread on this r/t a trial i'm considering at Johns Hopkins (too long to re-tell here).

    just wondering if anyone out there received 2 years, and what your oncs are saying.

    i'm obsessing on this, i think!

  • cbm
    cbm Member Posts: 475
    edited May 2011

    I did.  I finished the first year and simply asked for the second.  My reasoning was that the HERA trial comparing one year with two was not over and that I had a 2cm node with 1.6 cm tumor in it (mixed IDC/ILC/DCIS), and did not have rads (did have BiMx and ACTH).  If they had said noto year 2, I was going to apply for the neratinib trial.  My doctor said that with the second year of Herceptin, I would know what I got.  With the neratinib, I could be randomized to the placebo, which is no treatment.  He and I agreed on the 2nd H year, followed by the neratinib trial.

    For what it's worth, I was stage 2A.  I had Herceptin buddies on my same schedule (every three weeks), who were stage 3B and C.  They were in year 4 or 5 of Herceptin and had no reduction in heart function.  My oncology clinic is privately owned and is not a major NIH center.  My insurer covered the treatment.

    I have since completed the second year and have been in the neratinib trial, and we all think I got the drug, not the placebo; side effects are unambiguous.

    Good luck, pm me if I can help you. 

    Cathy 

  • elmcity69
    elmcity69 Member Posts: 998
    edited May 2011
  • deebou
    deebou Member Posts: 8
    edited May 2011

    I started in 10/2009 and won't be done until10/2011, in fact I have just about had enough. Just had test for high platetets and they still don't have an answer as to why. Trying to find an answer on my own at this moment.

  • Denny123
    Denny123 Member Posts: 1,886
    edited May 2011

    In Jan 2004, I had Gemzar with Herceptin for liver mets.  After 9 months, my liver went into remission.

    I have continued on with Herceptin alone and will be on it for life. Herceptin is the reason why I am still in remission and my heart EF has remained in the mid 50's.

     Denise

  • amontro
    amontro Member Posts: 504
    edited May 2011

    I'm stage iv and have been on herceptin and zometa since December 2008.  As of 3 months ago, I was getting it weekly and now it's every 3 weeks.  I am also taking daily Arimidex. At the beginning of the herceptin treatment the cancer in my spine got smaller, and the cancers in my lung got smaller.  One even disappeared.  Since then everything's been the same for 2 years.  My doctor will keep me on herceptin until there's a change.  I'm going for a routine ct scan this Thursday, so we'll see what happens then.

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