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Herceptin Allergy/Side Effects
Hello, Please direct me to an active thread if one already covers this topic. Thanks so much.
My amazing wife's very long survival story in brief:
Initial dx 2001 ... tx, rad, tamoxifen, recur, double mast, ...
multiple liver mets 2007 ... tx, tx and more tx, ...
December 2011 rad tx to big bad liver met - worked great!
January 2012-April 2012 - Doxil - smaller liver mets gone too.
begin Herceptin again in May 2012 to present day status appears to be NED and well controlled on herceptin. (Yeah!)
Problem: wonderful and hard fighting wife is having severe and very debilitating side effects and/or severe allergic reactions to Herceptin. We have tried eliminating benzyl alcohol and lowering her dose well below the standard amounts. Her reactions during or shortly following infusion often include pain running down the center of her back to her hips (like an inverted letter T); difficulty breathing; tightness across chest; tremors/seizure like reaction. The days following infusion she experiences the well-known flu-like syndrome, severe fatigue and significant full body pain.
Question/Request: Please share your experiences with severe side effects and/or severe allergic reactions to Herceptin and how did you and your doctor address them to balance QOL, treatment cessation and/or forging ahead types of issues. We are really trying to figure out how to keep her on Herceptin because it is working so well but somehow give her QOL.
As always, my thanks in advance to everyone for providing your experience and advice.
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