Herceptin Allergy/Side Effects

[bluesigo]

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.

[chrisy]

Flori(SoCalGal) has had herceptin allergy, you might try sending her a pm in case she doesn't see this

[bluesigo]

Thanks Chrisy, I sent her a PM.

[Lani]

I started a thread years ago, still running currently under the Herceptin/Tykerb board. It reads something like please list your side effects from Herceptin real or imagined

I hope someday some researcher tries to sum up the experiences listed there as I doubt Roche is doing sufficient "post marketing surveillance" Please add your description to that thread so it becomes all inclusive, if you can

Thanks!

[Ellie F]

So sorry to hear about your wife's reaction.i have been on long term herceptin and experience the usual side effects after infusion.
My last infusion was given in the afternoon when usually I get it in the morning. I suspect they mixed it with alcohol as I had bad joint pain, bleeding crusty nose and flu like symptoms for 2 weeks.
This time I was back to normal morning infusion and what a difference!
At my onc centre in England I have noticed that some ladies who have reported bad reactions to herceptin have been given iv anti histamine prior to starting the infusion.
I don't know if this also happens in America or if it would help your wife?
Ellie

[bluesigo]

Thanks Ellie. My wife receives steroids and antihistamines the day before and the day of the infusion. If necessary, and lately it has been quite necessary, this continues for several more days. We tried one dose without preservative but it was a very high dose so I do not know if she did any better w/o the benzyl alcohol because the high dose still gave her a bad reaction.

[SoCalGal]

Hi--
As I understand it, Herceptin is only 99% humanized and the 1% (hamster ovary stuff) is being identified as an allergen in my body. I did not have nearly as severe a reaction as your wife, and hard to articulate but the best word is a "wrong" feeling minutes after beginning my herceptin infusion, tightness, heart racing, etc. It was clear something was going very, very wrong. And by "wrong" I mean I was going to pass out or worse. This was after years of herceptin...SO--

My onc sent me to a local allergist who helped me create a pre-med plan AND a very annoying and complicated infusion schedule which infuses herceptin very gradually over 2+ hours. It means my nurse has to change my setting on the pump, every (10) minutes for the first hour, blah, blah, and blah.

Here's my premed dealio (my infusion time starts around 9:30AM):


Day before infusion (18 hours prior to infusion): (2) zantacs, which are h2 blockers, (1) singulair, (1) 10mg prednisone
Close to midnight, night before: (1) 10 mg prednisone
One hour prior day of infusion: (1) singulair, (2)zantacs, (2) benedryl and ativan as needed and desired. sometimes I take .5 sometimes none at all.

My Infusion schedule goes something like this:
RATE/TIME/VOLUME
6cc hour/10 minutes/1cc
12cc hour/10 minutes/2cc
24cc hour/10 minutes/4cc
48 cc hour/10 minutes/8cc
96 cc hour/10 minutes/16cc
120 cc hour/10 minutes/20cc
240 cc hour/for balance of the volume

Hope this helps create a dialog with your oncologist for "sneaking in" the herceptin without a reaction!

[KDR]

Bluesigo,
Wow, you have had wonderful successes thus far!
In addition to all the good and sound advice you have gotten above, have you tried calling Genentech directly for help with this?
Karen

[dchips1]

Are you getting the infusions every 3 weeks or weekly, when given weekly you also get a smaller dose than when done every 3 weeks

Good luck and prayers for healing Darita

[bluesigo]

KDR-Thanks, I'm working on a contact directly at Genentech through a contact at my office.

dchips1- long story but her most recent dose (last Monday) was very small to get a better feel for dose related side fx/reaction; basically she received a half of a 1 week dose and the reaction was significant and rapid, within 2 hours of infusion she had problems and even today she's still feeling the effects although not as intensely. Thanks

[SoCalGal]

Hi Ken,
Replying here so others can benefit:-)
I don't have any reaction following herceptin infusions. I would HIGHLY recommend slowing down infusion times. Even years ago, before any allergic reactions, I has them start me very slowly b/c I noticed that I would get a migraine as soon as they ran my drip. Since slowing the rate I have not had a migraine during the infusion.
Re: allergy testing - no actual tests were done. He just created a premed routine and a kind if sketchy infusion rate, which would have had me there 4+ hours. Fortunately my boyfriend is a science guy and he computed an escalation table which the docs approved.
We are in uncharted territory, so almost anything goes.
Tykerb may be a good alternative while your wife's system calms down and her pain resolves. Or-- try the super slow method. I am willing to bet it will be easier. What about continuing on benedryl and prednisone for a day or so as well?