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

[marymary]

Hi, Marily:

One thing jumped off the page at me in your post. You mentioned poor, almost nonexistent eyesight in one eye only, other eye was fine. As you've had a lot of other small issues with your eyes it is probably nothing to worry about, however, I had a similar situation which I ignored for awhile and it turned out to be a small brain met. Actually it turned out there were two. I had gamma knife a year ago and continue to be NED so all's well that ends well.

I passed the symptoms off for awhile because it was transient, happened only in one eye, when lying down, when the moon was full (ha ha). If I jumped up and turned on a light I could see perfectly! It never happened in the daytime so it was really easy to forget all about it (what, me worry???). Finally I got up the nerve to mention it to my GP who referrred me to an excellent Neurologist. Unbeknownst to me, the Neurologist had studied Neurologic Oncology at Duke. She too was (seemingly) baffled by my symptom but did order a brain MRI et voila, two small mets.

Brain mets are easy to treat early on. I certainly hope that's not what's going on for you but it wouldn't hurt to take a little peek.

Mary

[Marily]

Mary, I see my onc tomorrow. I will be certain to tell her.. I almost forgot about it. : (
Thank you so for the note. Hope it was a fluke but I agree it is definately something to look into. I know many friends who also had their breast mets go to the brain.. Hugs and thank you again
Marily

[marymary]

Marily, I'll keep my fingers crossed that it is just another side effect of Herceptin. Good luck and God bless.

Mary

[suzan w]

dx May '05 invasive lobular..stage 1 small 7mm tumor, ER+PR+ Her2+, Oncotype dx predicted high-intermediate risk for recurrence.

Bilateral mastectomy June "05
4 rounds A/C
started herceptin Oct. '05-every 3 weeks
arimidex for 5 years

MUGA's holding steady at 65%
side effects:
joint pain
crusty nose, bloody noses, stuffy at night-hard to sleep
insomnia
word recall problems-stutter for the right words
swollen ankles
weight gain-10 lbs

[juanita]

I am on herceptin every three weeks, almost one year now and finished chemo a year ago. I have noticed that my fatigue has gotten worse while being on herceptin. And it seems like the longer I do it the worse it gets. Memory problems have also gotten a lot worse. I've had splitting fingernails and small weight gain that is almost impossible to get rid of. I developed a rash that has since gone away with treatment of it.

[BubblesMom]

I am on herceptin every three weeks for one year ending in November and finished chemo 6/05. My symptoms are:

* swelling in hands and feet
* elbow/knee/shoulder pain. Shoulder pain so severe began physical therapy to regain mobility
* thinning hair (began after herceptin;hair growth after chemo was definitely thicker)
* feeling weak and unwell (after start of herceptin but has improved since acupuncture treatments)
* hot flashes and vaginal dryness (after start of herceptin but no longer an issue since acupuncture treatments)
* loss of words; general cloudiness of thought
* low white blood count
* vision change
* general bloating in midsection;not much weight gain but increase in body fat everywhere (arms, thighs, around waist) that seemed to happen in matter of months
* degradation of gum health. Prior to chemo always had 2 gum pockets that were borderline deep. Went to dentist in January (after starting herceptin in November) now deep pockets all over and recommending gum surgery! Additionally, gums bled every time I flossed or brushed (didn't happen during chemo). This subsided once I began taking COQ10.
* minor acne
* early on sometimes felt as if I couldn't get enough air (haven't experienced in awhile)
* runny nose, crusty in the morning (initially experienced quite regularly..no longer an issue)