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

[nancymarie]

I am only on Herceptin right now so no other chemotherapy or other treatment is causing these problems.

1. Very bad sinus issues: Dry nose, bleeding nose, congestion or nose dripping - I can hardly breathe at night. My doctor subscribed Allegra and it helped a little.

2. I feel like my energy level is not like it used to be.

3. Weight gain. It seems like since I have been on Herceptin, I have gained about 40 lbs. I started Herceptin on 12/9/05 for 1 year at my request.
I can't blame Herceptin totally for the weight gain, but it seems like I also feel more like a slug and don't exercise as much as I used too, etc. I used to be able to wake up and exercise right away. I have to give myself now at least 30 minutes for my nose to clear up, etc. I also tend to overeat when I am "not feeling that great" and this is how I feel on Herceptin.

4. Pimples. Although they were worse during the first couple of infusions.

5. Mouth Sores. I got them a couple of times (on my inner cheeks and inside my lower lip area).

6. Not thinking as clearly as I used to.

7. Acid reflux.

8. Blurred vision or dry eyes. I had lasik done, but it seems like my dry eye problem is worse now and I even had blurry vision the other day.

I think Herceptin is a miracle drug, but there are alot of side effects to cope with.

I get my Herceptin treatments every 3 weeks - for 30 minutes each infusion.

***IDC, Stage IIB, Her2/NEU 3+, ER/PR - and I requested Herceptin after reading the results of the trials***

Age 48

My last chemo was in 2003. My last menstrual cycle was in 2002 when I started AC so that put me into menopause.

and I'm also a Genentech stock holder!

[Mgarr]

When diagnosed in 12/04 at stage 2B I asked about Herceptin was told I would not get it it was only for metastatic patients. I was slated for dose dense 4 A/C 4 Taxol by the 2nd Taxol I had neuropathy, the last two doses were administered on a weekly basis at the same time Herceptin was approved and added to my final Taxol.

I continued to receive it for approx. a month on a weekly basis (w/ no decadron or benadryl) and then was switched to every 3 weeks. I did radiation while on Herceptin and then went off for 2 months due to lower MUGA score (not sure if that was really the case because they had new machine and lost first results then repeated test not enough nuclear med. left then did 3rd test next day)

Waited 4 weeks no Herceptin repeated test and MUGA was fine been on consistenly ever since. About 3 months ago I started having muscle pains & cramps in the legs & some weakness in leg muscles.

FYI I asked 2 different onc. about a 2nd year of Herceptin both of which said, not recommend because frankly we don't know what the long term effects are.

The only other med. I was on for about 2 yrs. was Allegra & Singular both of which I discontinued upon diagnosis. I have resumed both this month for sinusitis/rhinitus problems.


Mary

[IRENE FROM TAMPA]

I am so glad you thought of this . In fact I just asked some questions this morning myself due to return of SEVERE leg/hand cramping.

I am ER/PR NEG, HER2 3+
DIAG. BREAST CANCER - 1996
STARTED ON HERCEPTIN IN 1999 AFTER RECURRENCE
ON WEEKLY DOSES UNTIL 2005
STARTED EXPERIENCING LEG/HAND (SEVERELY) AROUND 2003-2004
WAS TAKEN OFF WHEN STARTED ON ABRAXANE
COMPLAINED TO MY ONC. ABOUT IT SINCE I WAS ONLY ON THE HERCEPTIN
THOUGHT IT COULD BE THAT. SHE HAD NEVER HEARD ANYONE COMPLAIN ABOUT THESE SYMTHOMS SO THOUHGT IT COULD BE SOMETHING ELSE.

CRAMPING COMPLETELY STOPPED ABOUT A MONTH AFTER STOPPING.

JUST STARTED BACK UP AGAIN IN APRIL WITH WEEKLY TREATMENTS IN COMBO WITH TAXOL/CARBOPLATIN.

THEY ARE NOT AS SEVERE YET BUT THEY HAVE STARTED IN MY HANDS AGAIN.

I WAS JUST THINKING TO CALL GENETECH TO ASK THIS VERY QUESTION.
IF ANYONE ELSE HAS THIS PARTICULAR PROBLEM. MY CONCERN OF COURSE IS WITH THE HEART.

LET ME KNOW HOW THIS TURNS OUT.

[Senorina]

I just ended my one year of Herceptin last month. I did it every three weeks. My Herceptin program started 6 weeks after completed A/C chemo treatments. (I think after going through chemo, nothing can be worst). My symptoms were, and are, as follows:

1. My first loading dose landed me in the ER the first night. I had a fever of 102 and strong chills.
2. After my first treatment, I took Decadron, Tylenol, and Claritin before every treatment.
3. For the first few months, I experienced the usual flu-like symptoms.
4. The more time that went by, the less severe the symptoms became.
5. I struggled with Decadron. It made me breakout like a teenager, I became very sensitive to the sun, my face would get red for the first couple of days, My heart would beat faster than normal for the first few days.
6. For the entire year, I also struggled with nasal congestion. I noticed it getting much better since I've been off of it.
7. Taking Caritin every day for the first week helped with the allergic reactions. Claritin-D really helps.
8. Over time my body did get used to it and the symptoms weren't so severe, but my MUGA scan dropped to 50% at one point.
9. It went back up after that. (I went on CoQ10.)

I hope this helps.

[kat in the delta]

I am glad you are now finished.
Since, I do not know how low my heart really got..
I am WORSE...AFTER ALL TREATMENTS..than...I was During Chemotherapy. I also had Adriamycin/Cytoxin..
A. can be Toxic to your heart.
Herceptin can also be toxic to your heart
I read where, if you add HERCEPTIN after the Adriamycin ...you are 5 x's more likely to have
Heart problems that may not show up until 10 yrs. or more.. down the road. I will try to find that study.. and post it when and if I do..

By the way, my Heart Echo, I took 2 weeks ago and a year from my stopping point except for some Zometa, that I didn't need as often...another story..........
MY HEART ECHO WAS a "48" 2 weeks ago....so I do not know how LOW my number was at the END of TREATMENT as the package insert of HERCEPTIN..says..along with the every 3 mos or more testing of your heart.... Look in any Cancer magazine.. where Herceptin is being advertized.. They have the pkg. insert written there..in black and white... I ONLY wish I HAD KNOWN THIS DURING THE TIME I HAD MY TREATMENTS....not the Drug Co. fault. ------------------------------------KAT
I also had taxol...--just caused nerve dammage-that Numbness in extremities..or maybe the fact that I cannot seem to LET GO of things I pick up with my left hand...which is really wierd.....
kat