Herceptin Side Effects

koolbreeze · 08-04-2006, 08:14 AM

Hi all, I am in my tenth month of herceptin treatment and am just now developing a side effect that does not seem to be listed. One day after my herceptin treatment, I get diarrhea and vomiting. So I have my treatment on Wed, then all night Thursday night I am sick and Friday I still don't feel well. Has anyone else experienced this side effect? Thanks

tricia keegan · 08-04-2006, 12:10 PM

Hi I'm in my 8th month and for the first time developed diarrhea half way through my last infusion.Have'nt had the vomiting thankfully.I was on the Genentech homepage and it did list these as remote side affects as not to many people had it,but definatly possible.It made me think it's having an accumalative effect as the longer I'm on it the more side effects I seem to get.You may find this does'nt occour with your next one.I'm still glad to be taking it though as I'm sure you are.

Tricia

Becky · 08-04-2006, 12:46 PM

I feel slightly nauseous the next day and get "down in the dumps". I have been on Herceptin for almost 14 months now.

Becky

koolbreeze · 08-04-2006, 04:20 PM

Thanks for the input. I hope we all get less side effects.

Rendi69CA · 08-04-2006, 05:26 PM

I am on herceptin without chemo for 5 weeks. I just started with diarrhea. My doctor is saying, "it isn't from herceptin."

Chelee · 08-04-2006, 06:31 PM

Koolbreeze, I called Genentech a few weeks ago with some questions. After we were done they offered to mail me some information on herceptin which I accepted.

Under "Infusion Reactions" consist of fever, chills, and on occasion included nausea, vomiting, pain (in some cases at tumor site), headache, dizziness, dyspnea, hypotension, rash & asthenia. It said those reactions are usually mild to moderate in severity.

Under "Adverse Reactions" it says the most common adverse reactions associated with HERCEPTIN use are fever, diarrhea, infections, chills, increased cough, headache, rash, & insomnia.

It goes on about their clinical trials and has a subject titled "Diarrhea". Of patients treated with HERCEPTIN as a single agent, 25% experience diarrhea. An increased incidence of diarrhea, primarily mild to moderate in severity, was observed in patients receiving herceptin in combination with chemotherapy.

There is too much information to post, but it does mention vomiting, & diarrhea. I know when I first started on herceptin and was really NEW to it...I kept getting nauseated. I felt really sick one night and called the nurse advice line like I was TOLD too. They decided after talking to me they got a doctor on the phone. I told him I felt really sick to my stomach and weak. He RASIED his voice at me & said, "Herceptin DOESN'T do that", and he HUNG up on me.

Its really nice to be told it won't do that when you KNOW it did!

I started hercepting in Feb. 06 and I am still on it. I ALWAYS feel a "little" nauseated the first day I get herceptin. It never gets real bad...but its annoying. But if they give me tagament as a pre-med, or even in pill form it does help.

Everyone is different...what affects one person one way...might not another. And I have found with herceptin...many of the things that bothered me at first has gotten better. Its like the body adjust to it some.
The worse for me is the first day...due to nausea, and being extremely fatigued when I get home. But its so much better by the 2nd day, then its usually a breeze after that. (Knock wood!)

So anyway...don't believe the doctors if they tell you the nausea, vomiting, or diarrhea is NOT from the herceptin...because it says it happens right on Genentechs own information sheet. I get really fed-up with doctors over the years that tell me such and such medication WON'T and CAN'T cause that when it DOES. Argh! (They might mean well..but they aren't always right.)

Good luck...I hope things get better for you. Sometimes with herceptin it will...so hang in there.

Chelee

Christine · 08-04-2006, 07:52 PM

Tricia
Sometimes premeds are given prior to Herceptin infusion, such as Decadron and Benedryl that can also give you acicic stomach problems. I was given Zantac at times. Herceptin alone I found to be very tolerable. For me, a combo drug usualy gave me side effects.
HUGS,

firstplace · 08-04-2006, 09:21 PM

It amazes me that the doctors think they are so sure of the side effects of herceptin when it hasn't been out here so long. They also don't think you can get cumulative effects from it. I do. I have been on Hercepting since March, but I just started getting Taxol 4 weeks ago. I am ER+ amplified by Fish and with the new Oncotype DX test that just came back. I started out with DCIS in my left breast, then needed a 2nd biopsy because there weren't clear margins. The 2nd biopsy showed a .5 centimeter portion of invasive cancer that ended up being explosive with it's aggression. I know the herceptin is saving our lives so the risks are worth it, but they say that it doesn't always work! They are telling me that I will only be on herceptin until December. Does that mean that my ER2 genes will start producing again? Do you know anyone who has stopped herceptin and is doing great?

Sherryg683 · 08-04-2006, 10:18 PM

I had just started feeling decent again and went in yesterday for my Herceptin. Today, I have the awful sinus pressure, dizzyness, headaches and the stabbing pains in my stomach are back..I really believe it's the herceptin doing this, my scans last month were clean. My Oncologist told me "man you sure suffer from a lot of sinus problems". I told him it was the Herceptin, he looked at me like he had doubts. I told him to come on this board and read about all the side effects women were having on Herceptin. It's not as bad as the Taxotere but it's really hasn't been that easy of a drug for me, although I should just be glad I have it...sherryg683

Bev · 08-05-2006, 07:18 PM

Hi you're aren't all crazy. Since being on herceptin and taxol only, I definately have diarrhea. I'm OK with it as immodium gives me breaks. My sinuses are also whacked, I go weeks without being able to hear.If this is the price, I'm OK. Best wishes, BB.

LOPSIDED · 08-05-2006, 07:43 PM

I ALWAYS READ THAT A LOT OF PEOPLE HAVE SINUS PROBLEMS WHILE ON HERCEPTIN. I REMEMBER THINKING "OH THIS IS JUST GREAT" BECAUSE I HAVE HAD PROBLEMS WITH SINUS & RUNNING NOSE ALL MY LIFE AND THOUGHT HOW CAN IT GET ANY WORSE. WOULD YOU BELIEVE MY SINUS PROBLEMS HAVE ALMOST WENT AWAY AND I HARDLY EVER HAVE A RUNNY NOSE ANYMORE. I'M ON HERCEPTIN A LITTLE MORE THAN 2 MONTHS AND I REALLY DON'T HAVE ANY SYMPTOMS EXCEPT TIRING EASILY. MY ENERGY LEVEL IS BETTER THAN WHEN I DID A/C & TAXOTERE BUT I STILL FEEL TIRED ALL THE TIME. I'M NOT EVEN HAVING HOT FLASHES WITH TAMOXIFEN. I'M DOING SO WELL I JUST FELT I HAD TO TALK ABOUT IT BUT THEN IN THE BACK OF MY MIND I'M THINKING MAYBE I SHOULD KEEP QUIET AND HOPE IT CONTINUES. WHAT THE HECK, I MIGHT AS WELL BRAG AND ENJOY THE MOMENT. THANK GOD FOR NO BAD SIDE EFFECTS.

Val Pfeiffer · 08-06-2006, 08:04 AM

Wasn't someone on this board making a list of Herceptin side effects? I think they were hoping to collect data to send to Genentech. Was I dreaming that? My side effects: (1) headaches unless I drink a ton of water for 24 to 48 hours after my triple dose, (2) sort of achy in a way that is different from any other achy feeling in my past, (3) low tolerance to any alcohol other than beer.

Julie5 · 08-13-2006, 11:21 AM

I had my first herceptin on 24/7 for primary breast cancer. I had it on a monday, tuesday night/wed morning had these terrible stomach cramps, then vomiting and diarrhoea. The diarrhoea for a few days. My consultant did say when i see you again in 3 months you tell me the side effects! as they are still learning.
I went to a talk on herceptin and she mentioned vomiting and diarrhoea, but did say your body should become more tolerant although after reading some of these posts I'm not sure about that. I'm due my 2nd dose tomorrow, hoping for better results, especially as it is a slightly smaller dose.
Will let you know.

koolbreeze · 08-13-2006, 01:29 PM

Thanks everyone for affirming that I am not crazy. Although, I am sorry anyone has to have negative side effects. I told my doctor about my vomiting and diarrhea and she said it is not the herceptin. Oh well, I guess they are still learning about it but I wish the docs would not dismiss us so readily. Take care all. Kool

janet/FL · 08-13-2006, 06:27 PM

My worst side effects (well there are three primary) are muscle aches either from the Herceptin or left over from the Taxotere. My sinus problems got worse with taxotere then better with Herceptin. Well, the worst one is the insomina. Last three week treatment was almost 5 weeks ago. I am still sleepless, and very tired and achy if I do much physical exertion.
But my hair is growing in better now, I think.
Janet

Chelee · 08-13-2006, 06:59 PM

I seem to be having a problem with my stomach hurting as Sherry mentioned. I can't say for sure...but am having all kinds of PAINS in my stomach. I would think its a ulcer...but the pains are all over the place in there. The last couple days it has gotten bad. The pains are in *different* places each time in my stomach. Its really bothering me. Enough so that I decided to try taking some Protonix again. Just in case its all the stress and nerves from worrying about NOT being able to do rads.

I sure wish it would go away...it hurts.

Chelee

MJo · 08-14-2006, 08:45 AM

My side effects -- diarrhea the day after the infusion. Very tired the day after the infusion. My boss who also is getting herceptin finds that her belly becomes hard for a few days after Herceptin. I also have some hardness, but hers is worse. Doctors say it's not Herceptin. BS. They told me my mild nausea during radiation wasn't due to radiation either, although two other women I know had nausea during radiation.

aurey · 08-22-2006, 06:44 AM

I've had herceptin since last October, first weekly with taxotere chemo then this year three weekly. My onc will not have it that herceptin has side effects he says they are left over from taxotere. But diarrhea is definitely from herceptin, not bad but in middle of cycle get very sore from it. Hair growth slow to almost stop 2 1/2 inches only since January. Aching bones and joints, and a perpetually wet nose. Laughter or tears means a tap has turned on in my head and water runs, consequently wf my nose does dry a bit at night or under very dry conditions sort of crystals form in my nose and block it making nose very sore.
But as from 11th this month my heart is not performing well EF has gone down not certain to what but below 45% so herceptin was stopped by registrar, I have another heart echocardiogram on 4th September and booked to see onc 15th September in the meantime I'm in limbo, Herceptin I believe is the only drug that can keep the cancer away for me so the side effects have to be put up with but not having the herceptin is so very scary all is up in the air all over again.

koolbreeze · 08-22-2006, 07:47 AM

Aurey, I know what you mean. It is scary to think of not having the Herceptin even though we experience side effects from it. I am sorry that you are having heart troubles. I have seen posts that indicate stopping Herceptin for awhile helps the heart get back to normal and then sometimes they resume Herceptin. Maybe that will be the case for you.

I wish you the best. Hugs