Herceptin side effects - after 3 infusions

Hi all!

I reviewed previous posts and couldn't find any answers to my questions. (If it has been covered, please send me the link to the post!) My question is really specific and I am sorry if I gross anyone out, but I need to know.

What side effects of Herceptin (alone - not adjuvant) that linger even after 3 infusions. I know about the chills and fever at the beginning and the heart issues, but I am looking to check some thing like:

- soft stool/diarreah
- sore ribs
- mild headaches
- uneven energy

Some of this might be due to studying and working at the same time (i.e. stress), but I just wanted to check. I am sure you can relate to the "worry wart" that comes out in all of us after what we've been through.

Thanks to you all!

Angela

I have had 8 Herceptin treatments (weekly) and my "side effects" have been very similiar to yours: soft stool (the whole week), maybe a headache the first day, and sore ribs (but I take Arimidex which also causes aches). The main thing I notice right after the treatment and several hours afterwards, is a feeling of something like an adrenaline rush. My heart seems to beat faster than normal and feels like it is working harder.

I have wondered how much of this is my imagination. But my MUGA from a couple weeks ago was at 50-52% which is not great, and also concerns me. I sure don't want to have to stop Herceptin when I had to work so hard to get it in the first place. I am 2 1/2 years out of treatment, so I am one of the "late herceptin" people.

Good luck to you.
Barb

I have had one infusion of Herceptin and have suffered from headaches and tiredness.

Karen

Although I have not had diaherrea, it is a noted side effect on the Herceptin website. I get more tired the day of infusion and the next day as well as a mild headache (sometimes but definitely a bad one the first double dose). I have some hip joint pain on both sides due to Arimidex (had bone scan to make sure). Could be the Herceptin cuz it got worse after I started (hence the scan).

I have had 6 infusions so far. Everything you are going through is normal.

Best wishes

Becky

I wanted to pass this on. My nurse told me in oncology when I get my infusion that I need to drink lots of water the day of the infusion. That helps to make the Herceptin move out of the kidneys. I do know that if I get busy and don't drink I am really ill and fatigued, with my head not feeling so good, that night. As soon as I start drinking glasses of water and start going to the bathroon getting the urine to moving I am feel o.k. May want to try this certainly, no harm done if it doesn't work. No one told me this until recently but I did find out on my own at the beginning. Hugs, Sandy

I posted above and forgot to include nasal drip as another side effect of hercetin that I have experinced. It isn't much; most noticable when bending over. After my treatment last week, I had a one day, stuffy, runny nose.

Barb

[StephN]

Hi Ladies -
Good questions. Our general state of health can be aggravated by Herceptin side effects. But there are a few things we can do to minimize any side effects.
I have been on Herceptin plus occasional Zometa for over 3 years now.

If my stool has been normal, it will remain normal after my infusion. That is if I drink enough and eat during my infusion.

I always get a can of cranberry juice, a bottle of water and a patient lunch from the fridge when I come in. Bolt down the cran juice even before getting accessed. Then I start sipping the water. I finish one 16.9 oz bottle of water and start another in the car on my way home.

Length of time is also a factor in how I feel. 45 minutes is better than 1/2 hour for my 3-weekly dose.

One more thing I have noticed is that some nurses give more of a "saline rinse" than others. More of a rinse also helps. Not sure of a "prescribed" amount, but it should take at least 5 min.

If I am not using the bathroom by the end of my infusion, something is wrong!

Steph,

I am currently taking taxol and herceptin, 7 of 12 so far, and I have had all of the side effects you mention along with nasal drip. None of them have been too severe, and the sore ribs does not seem to be as common to everyone. I have also had soreness in my neck this past week, which I have addressed in another post and wonder if anyone else has had anything similar. I asked the onc about it last week. Neither he nor I can feel any swelling or nodes, he did not feel there was need for concern, but I'm really starting to get concerned. I will address it again this week.
Just wondering if anyone else has any insight.

Sassy

Ladies:

I'm taking Herceptin for the 2nd time (I'm 2 yrs out) and am only having a few symptoms...had no idea that the nasal drip was a result of the drug - I thought it was allergies with our hot, humid weather in Indianapolis.

I am on Aromasin so have joint pain, but that's really it. I don't have any fatigue, headaches or flu like symptoms. I will certainly hydrate myself better during infusion after reading your comments.

Thanks!
Ann

Thanks to you all for sharing your experiences. I am feeling a little less CRAZY now that I know some of it seems to be related to Herceptin.

I am going to my onco office tomorrow to see about this rib situation. Let's just hope it is another weird side effect!

If you are reading this and haven't posted your similar experiences, please add on!!

Thanks!

:) Angela

StephN:

Thank you for some really good advice about hydration during herceptin infusion.

Margo

Angela,

Interested in what your onc had to say about your rib situation and any other side effects. I'm still having this neck soreness but does not feel it is of concern. Wondering if you or anyone else has anything similar.

Sassy

Angela- Did you have radiation near the neck area or any surgery near it? My onc told me the pain was from Herceptin. I feel the jabbing here and there in the areas where I had radiation and surgery only. Even in the ribs. Almost feels like the pain you get a few days after a hard workout...

Maria