Herceptin ?
 

Hi Everyone,
I've had my second treatment TCH with no problems, but when I have the herceptin by itself in between. I
have been getting the shakes.
Yesterday they gave me extra steriods, but I worry
if I have to take the herceptin for at least 18 months
like we're planning, and have to take steroids the whole time. What that will do to my health.
Has anyone had reactions to just the herceptin? My
doctor said it's rare.
Thanks, Laurie

Laurie - I have had one TCH and 2 herceptin only so far and had a reaction only to the benadryl pre-herceptin. I don't take steroids before the herceptin only, just before the TCH. Sorry I cannot be of help to you but I just wanted to post and let you know I am at about your same timeframe on the TCH - so far I am hopeful for no herceptin only side-effects (certainly not like the b###-kicking I got from TCH!) Hang in there!!!!

Rebecca,
What does a reaction to benadryl feel like. My nurse
said she was thinking it might be the benadryl and not the herceptin. I know my heart races with the benadryl, but
do you get any other symptoms?
Laurie

Laurie, What you might want to discuss with your oncologist and chemo nurse is to slow down your herceptin infusion. Most want to give you your herceptin in 30 minutes. I know I had major headaches imediately & other minor side affects when I was given herceptin to quickly.
So I asked my chemo nurse if we could slow down my infusion to at least 45 minutes to a hr? Once we changed it to one hr I never had any more problems.

How long is your infusion time for just herceptin wkly ? When you get your full chemo with TCH all together your IV infusion of herceptin might me much slower therefore you don't have any problems? (Just thinking here.) :) So when you go in for just the herceptin alone they might be giving it to you to quickly. Its just one thing I can think of you can try that might be causing this problem your having? Talk to your onc & chemo nurse about this.

As to the benadryl the main side affect is sleepiness, fatigue, and dizziness. But everyone's body reacts differently so I am sure your team & you will figure this out. But I would be interested to know how long your herceptin infusion are when you go in for just herceptin? If your onc has ordered extra steroids when you do just your herceptin infusion that must be only to stop the side affects your having with the shakes. When you had the steriods along with herceptin did it stop your problem? I don't blame you for not wanting those darned steriods. But hopefully slowing down your herceptin infusion just might work? (Discuss that as a possiblity with your onc & chemo nurse.) Hang in there.

Chelee

Laurie,
I always infuse the Herceptin over 90 minutes, plus I ask them to give me fluids. I do fine with that. Otherwise, I feel yucky and cough a lot. My only other symptoms from the Herceptin are acne/breakouts. When I did the chemo, it always hit me hard around day 6.

Good luck,
Beth

Laurie - my herceptin infusion is an hour by itself. My side effects are sleepiness. Beth - thanks for mentioning the breakouts - I wondered which drug was doing that to me! What a party!

Hi Guys,
Thanks for the help. My herceptin infusion was 90 min the first
time. Then 60 min twice then 30 min three times. I had no problems until they started doing it in 30 min. Now I get the shakes during infusion and the day after I have a really bad headache. I rarely get headaches. I did mention to my nurse that it seems to bother me at 30 min, and that's when they decided on the extra steroids.
I hope we figure this out. I don't want to feel like this for another year and a half. I have my third TCH this Wednesday. I'm going to speak with my doc about it.
Laurie

Laurie, After reading your post your problem sure seems like its due to the 30 minute infusion time. They need to slow it down for you. I'm serious...there have been too many other women that have had problems with 30 minute infusions of herceptin. (Not all...but quite a few.) When I did the 30 min infusions I always got a really bad headache, and twice I stood up and almost went down because I got so dizzy. It came on fast. My chemo nurse caught me just in time once..she could see how bad I looked. Once we changed my infusion time to 1 hr...no more problems. Then herceptin was a piece of cake.

Since you had no problems with the 90 min & 60 minute infusion I certainly think this could really be what's causing your shakes. Please talk to your onc and chemo nurse because that would be awful to have to take all those steriods for the entire year of herceptin if it wasn't necessary just by increasing your infusion time. There is another benefit to longer infusion times of herceptin...its easier on the heart. So I really believe if you have them slow it down to at least 1 hr this will get rid of your problems. (Then...no more steriods) :) Let me know how it goes. It sure is funny the only time you had problems with it was when it they gave it to you in 30 minutes?

You mentioned your headaches...my chemo nurse always gave me two tylenol before my infusions and it did seem to help. (Just another thought.) Let me know how it goes.

Chelee

the only problems i had with herceptin was the benadryl. it made my legs really jump and jerk causing me to have to get up and move. then once that settled down i took a nap. by the time i was ready to go home i was fine.

Chelee is right about slowing down your drip. That can help a lot.

Re: Benadryl. How are they giving it to you? Do they give you a pill (which is what I get, continue reading to learn why), is it in a bag and a drip, or is it a push with syringe into your line.

Benadryl push from syringe - hits your blood stream FAST and strong. I had a horrible reaction to it... I was almost in a coma, so drugged that I couldn't talk or move my limbs for about an hour. It took about 8-10 hours for it to wear off. My eyes were dilated, I was shakey and my heart was racing the rest of the day. It was a virtual out of body experience the one time they "pushed" it. NEVER AGAIN!

Benadryl drip - it drips slowly before the Herceptin, and it hits the blood stream a lot slower. This method is also too strong for me, just absolutely knocks me out for about 5 hours... turns me into jello. But not at all like from the syringe.

Benadryl pill - this is the normal one pill strength of Benadryl, and it is all I need to mitigate the slight Herceptin allergy that I get from Herceptin infusion. They give me a pill, I swallow it, and all is good in the world. I take a nap and that's that.

It is written in my chart (big red letters inside the front of my file) - to give me benadryl PILL only.

I have to agree with the rate of the drip. With my first infusion of Taxol/Herceptin I woke up from my benadryl induced sleep extremely hot and sweaty. The nurse slowed my drip and I was fine. When I was on Herceptin alone I didn't get benadryl and my infusions were given over 90 minutes. I tolerated it just fine.

I had my weekly infusions done in 60 minutes. If it was done faster I had horrible headaches and didn't feel well. I always was given a Benedryl pill and two tylenol at the time of infusion.

I also had my Herceptin given over 60 minutes - did the trick for me. I would come home that afternoon and sleep for a couple of hours, and nap for the first few days afterwards - but no shakes, no more headaches like I had when the infusion was 30 minutes.

all the best
caya