Herceptin Reaction

[lili7]

After reading all the posts on Herceptin side effects seems I must be the only one with such unprecedent side effects. After FEC 100 x6 I started Herceptin. By the 2nd dose I started with peripherical neuropathy and after the 4th dose I ended up in ER due to extreme lost of balance, numbness in extremities , feeling of dizziness and loss of balance, unable to speak or write and confussion in understanding simple things. felt almost like a stroke and was very scary.
My temperature fluctuated between 36.2 to 37.4 in 1 hr with chills and hot feelings within minutes of each other. I lost all my toe nails and started to have the same process on finger nails as well as feet towards anckles swollen all the time. Now is 5 weeks after my last dosis and most of the symptons subsided. The point is why did I have it. Now without it I am scared as I am Her2+++ and only taking arimidex.
Anybody experienced this effects , even partially?
Thanks . What a wonderful; group!!!!!
HUGSSSSSSSSSSSSS to all

[heblaj01]

lili7,

The only case that comes close to your extreme reaction to Herceptin is one I only remember in general terms, not in detail.
The women became so ill that she had to be rushed to the emergengy room.
Nevertheless her onc considered she had to resume Herceptin after a recovery
period. To avoid a repeat of the dramatic reaction she was put on an extremely slow infusion lasting 8 hours.

Maybe in your case you had a combination of detrimental conditions: too fast infusion, not enough or not the right premeds, interaction with previous chemo because of a too short wash out period....?

[mts]

Your white blood count was probably already compromised a bit before you started the Herceptin. I read somewhere that it takes two years to "heal" from chemo...

I had a similar reaction as yours (although no hospital stay) with loss of balance, could not raise my head due to horrid dizziness high BP and heart palpitations. My onc thought enough of the reaction to send me in for a brain scan... we all thought I had a tumor up there! Turns out my brain was fine. I eventually got better (after a couple of weeks or so) and then went on Herceptin every week, which still made me dizzy. I even got back on every 2 week doses only to feel awful again. This proved that the Herceptin was the culprit. After that I went on weekly doses and still felt a bit dizzy when I looked up fast, or turned my head... After about 3 months of that, I was perfectly fine. I finished my year in July and I still have mini-dizzy spells that last about 2 seconds with a hot flash following. I call it my early warning system.

Hormones, anxiety, chemo -- it ALL just takes a toll and we have to learn to deal with it. I felt like a wimp when I would see women twicw my age dealing with breast cancer way better than me- but I got over that too. If anything, I am entitled to wimp out whenever I want!

Hang in there! You've put up with so much, don't give up on Herceptin yet. Time does fly and YOU WILL get better!

Maria, (MTS)