6+ years NED - how long on Herceptin? Any allergic reactions?

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gmamma
gmamma Member Posts: 2
edited July 2016 in IBC (Inflammatory Breast Cancer)

First time "poster" here! I was diagnosed with Stage IV IBC in 2009 and my doctor has kept me on a regimen of Herceptin infusion every three weeks. Since my body tolerated it well and I have remained NED since my intial chemotherapy/surgery/radiation, I have been told by my doctor to continue this game plan indefinitely.

Up until recently, I have had no problems with this infusion. However, over the last several months, I have had bouts with sometimes severe hives. I have stopped and started meds, worked with an allergist and consulted with my oncologist. We have been trying to isolate the culprit and, unfortunately, everything seems to be pointing to Herceptin. Anyone heard of allergic reactions to Herceptin? Anyone had recurrence after discontinuation of Herceptin?

Are there any other long term users of Herceptin? I am at nearly seven years. If so, how long?

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    Hi Gmamma-

    Welcome to BCO! We hope you find the support and info you're looking for!

    Allergies can develop over time, but we certainly hope it's not the Herceptin since it's been so successful for you! We know you had IBC, but we would suggest reading through out HER2+ forum as well; Herceptin is a common treatment for triple positive cancers, and many members in that forum have experience with it. You can find it here: https://community.breastcancer.org/forum/80.

    We hope this is helpful!

    The Mods

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  • gmamma
    gmamma Member Posts: 2
    edited March 2016

    Yes. They skipped one treatment to make sure I did not have any hives. They reintroduced infusion on Wednesday and they had me increase allergy medication at home five days prior (double dose of Zyrtec.) They also pre-dosed me with a double dose of Bennadryl and a steriod on the day of infusion. Hives appeared again about three days later. Baffling, huh?

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  • positivenegative
    positivenegative Member Posts: 106
    edited July 2016

    i get a skin rash. Do you get/take any other meds...AIs, etc.

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  • exercise_guru
    exercise_guru Member Posts: 716
    edited July 2016

    do they run your herceptin over 60 minutes with saline?

    I had flu like symptoms when they ran it by itself over 30 minutes. Slowing it down and adding saline helped significantly. Not sure if that is worth mentioning to your MO. The nurses were always annoyed with me for running it 60 but it made a big difference

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