Please post your two cents on Herceptin "side effects" real or perceived!

gin-tx · 04-07-2007, 07:33 AM

I think everyone is affected in a different manner. I have runny nose, which I take something but some days it makes little difference, difficulty sleeping, so take something to help me rest at night, when I don't I toss and turn all night long, no problems with toenails or fingernails yet, dryness in nose and nose bleeds (only happened a couple of times). And of course lots of fatigue in daytime, I usually come in from work as I work part time and sleep about an hour. Also I have a tumor on my spine that makes it difficult to lie on my back, so finding a comfortable sleeping position is not easy. Have had radiation, it shrunk some but cannot be removed because of location.

Keep me informed of your progress. I think this site is so wonderful to air our complaints, sometimes our families or the docs do not understand.

hugs,
ginkott1@aol.com

harrie · 04-07-2007, 12:42 PM

It is interesting to read all the various side effects. My BIGGEST complaint is the excessive salivation during waking hrs when I am not eating. Last night found sucking on sugarless Ricola helps a whole lot. My fingernails are starting to look like small bleeding beneath the nails. Insomnia....not me. I sleep really, really good. The few days i take the decadron, I might have a slight problem, but over the counter Sominex (1/2 tab) is all I need to fix that.
It is one wk past my last TCH tx and I can feel the fatigue. When I do some of my cardio at the gym, I can definitely feel the difference.

gin-tx · 04-09-2007, 10:52 AM

Dear Maryanne,

I have none of the side effects you mention. So far nails have been fine, salivation no problem, have lots of allergies, so take something for that. Biggest problem is I'm noticing I'm very tired for a couple of days after treatment, just slept a lot over week-end and watched TV, did not exert myself at all. Had no energy to do much. If I don't take something to sleep, I may sleep till around 2 am, then I'm up for a couple of hours, then tired the next day. I have other issues but they're totally different from yours. For the most part I think I've done fairly well. Now noticing how tired I get after treatment, don't know if it's Benadryl or the Herceptin. Keep in touch and let me know how you're doing.

hugs,
ginkott1@aol.com

Adriana Mangus · 04-10-2007, 01:07 PM

May I ask you about your bc. I was diagnosed in 1994 and am dealing with my 2nd bout with bc.

Will you be receiving Herceptin for life?
What type of treatment did you receive first time around?
Did you have mastectomy?

Any other information will be appreciated.

Thank you Gin-Tex

theresaw · 04-10-2007, 03:08 PM

I was diagnosed June 2006, left breast, her2 post. non hormonal. From July 2006 to Sept. I was on what I called the Red Death (sorry if it sounds bad) then from Oct 2006 to Nov was on Herceptin and Taxol, then Dec until April 2007 just Herceptin. Yes I had Mastectomy with reconstrutive surgery, the tram flap.
Can I ask you when your reacurrence happened. I am concerned about reacurrence because it is in my family. I know with all the Meds out there i shouldn't be worried, but I can't help but think about it.
I hope this was helpful.
Thanks

Malena · 04-11-2007, 07:48 AM

I finished the chemo on may 2006 with a 55% of FE. I started herceptin on June 2006. After only 2 infusions (every 3 weeks) I had a serious heart problem (FE 15-20%). I stopped herceptin.

Adriana Mangus · 04-11-2007, 01:18 PM

Dear Malena: I was devastated when I was diagnosed at age 38, but you? Oh God soo young. Have you heard or Tykerb? Maybe this new drug will work for you. Too bad you couldn't continue with Herceptin. I have been on it for the last almost 4 years in August..so far everything seems ok..I keep praying....I have also been taking Xeloda for the last 3 months due to the tumor growing back (little, nothing to be concerned about for now) and it appears that it's working. I will be seeing the onc. May 2nd. Keep the faith and pray HARD.

Stay Positive....Best of all to you...

gin-tx · 04-12-2007, 01:20 PM

Dear Adriana,

This too is my second bout of BC, first in 1995, only had lympectamy and radiation. Second episode was April 2006, I had a biopsy that surprised everyone as it was malignant, surgeon did not expect this. He did wider margins and also had sentinel node before surgery. One node malignant, did not have mastectomy but am presently getting Herceptin and Aridia. Aridia is every 6 weeks, other every 3 weeks. So far so good, I see surgeon again in June, he may decide at that time on radiaiton but don't know at this point. Hope this finds you progressing well, keep me informed of how you are doing. As far as getting herceptin for a long period of time, don't know, that will be the onc decision.

ginkott1@aol.com