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

[Marilyn]

I've been taking Herceptin since July of 2001. When I began Herceptin I was also taking Taxotere and Zometa. I took this combination each week for 6 months and continued the Herceptin and Zometa weekly for 2 1/2 more years. Since that time I've taken Herceptin and Zometa every three weeks. I lost quite a bit of hair, my eyelashes and eyebrows during the 6 months of chemo. To this day my eyebrows, eyelashes, and hair have not come back. I have contacted Genentech about this and they have called and talked to me about it.


As far as other side effects I do have watery eyes and on the day of the infusion I am a little more tired and occasionally I have a headache that day. Otherwise I really don't have any complaints.

[Kimberly Lewis]

I love that we are posting these effects. It is such a comfort to know that I am not a hypochondriac (hopefully!) I am er/pr+ Her2 weakly positive, stage 3a, 7 nodes. diagnosed 5/05.
My side effects and if they lasted were;

1. Bloody, crusty noses. Almost completely gone now after 11 months on H.
2. Lack of mental clarity, forgetfulness. Worse than ever! I have a 70something friend and we compete for how many times during a conversation we forget what we are saying!
3. Rib pain, now gone..
4. achey feet and legs in early morning, late evening still...
5. rediculously peely soft nails still!
6. Tendancy to infections - difficulty shaking them even with high doses of antibiotics! Just had LAVH and my navel got infected from incision, 6 weeks out still yucky. Got a yeast infection that also is still there!!!
Anyone with that effect and possible help for immune system please write...
7. Most bothersome - breathing problems. When I was first infused the premeds made me very sleepy, every time I fell asleep the oxygen sensor beeped like crazy and they kept telling me to breathe. Same thing when I had all my surgeries.. like when I fell asleep I didn't breathe properly. I sense it when I am difting off now because I hear my blood roaring in my ears - I take a few deep breaths and it stops. Even during the day now I feel my heart start struggling and I take a few deep breaths and it stops. Now how is that for weird?
8. Herceptin emotional addiction! Once my Oncologist told me my year was up I went into a tailspin emotionally. Felt I was just not prepared to face life without my security blanket. Really funny thing was that Genetec gave out blankets w/Herceptin printed on them. I guess I will have to wrap up in that and get through this! No more tears now - I am facing a move and lots to do!

[Mary Jo]

Maybe it's too early to post here yet as I only finished herceptin 9 days ago. (October 11, 2006) Naturally, side effects wouldn't be over yet as I received my infusions every 3 weeks. So, I'll have to wait a while. However, I can say that for the most part herceptin and I got a long real well. I only had one MUGA scan at the 4 month mark as my oncologist said "toxicity normally occurs within the first 4 months." At that time my MUGA was favorable so was told I could continue. They watched me for symptoms and I never had another MUGA. I exercised throughout (2 - two mile powerwalks per day) wih no problems whatsoever. The only side effects I can report are some diarehhea - gas - and left rib/side pain. From reading other people's posts I see that the left rib/side pain is pretty typcial. There must be receptors over there huh? Well, whatever, I'm not complaining. I pray it helped me and that I will be disease free forever. (as we all do)

Mary Jo

[Jennid1]

Kate, I have all the same side effects as you and add lower back and hip pain. I also experience chills for about a week afterwards. I have been on Herceptin since 7/06. I also tried the weekly and went back to the every 3 weeks just to try and get a few days of feeling "Normal".

I thank God for these message boards because my oncologist keeps telling me that herceptin has no side effect.

[tousled1]

Jennid,

When I told my oncologist about my side effects she said "you shouldn't have any side effects with Herceptin." I told her she was wrong and that she should come to this site and check out all the side effects that are being raised. I too have lower back pain but I contribute it to my spinal fusion. Although since I started Herceptin I had to go back to my pain management doctor.

[betlen5]

Hi, I am going through my 4th reacurrance and was on taxol/herceptin for 3 months and herceptin alone for 9 months and the cancer has returned and waiting on diagnosis for what to do next. Has anyone here had a reacurrance while on herceptin?

Thanks, Betty
New to this site

[atdec05]

Hi,

This is a link to a news article that explains why some women don't respond to Herceptin alone, and what treatment seems to work. It sounds like it's only available now in clinical trials.

http://www.medicalnewstoday.com/medi...p?newsid=40964
- Anna