bad reaction to herceptin

On tuesday I was given my first dose of herceptin and thought it would be a doddle compared to chemo, how wrong I was. I was fine most of the time while the herceptin was going in but about 3/4 way through I began to feel extremely tired. A short time after this I began to vomit and had a very bad case of the runs. The sweat was pouring from me, I felt dizzy and could not move from the toilet, I was getting worse and was so unwell I thought I was going to pass out, the nurse decided to give me an anti sickness drug into my vein, this seemed to settle me after about 10 mins and I was taken back to the ward where I was given some other treatment (I think it was a steroid but too ill to care). I then fell asleep for three hours untill it was time to go home.

When I got home I went straight to bed and began to feel really cold and shivery, fell asleep for another 5 hours and woke up feeling really hot, took my temperature and it was raised, I decided to phone the hospital if I got any worse but slept again through until late morning when I was fine again.

The hospital phoned to ask how I had been and told me that next time I was to start taking anti sickness pills the day before and morning of my treatment, they would then give me Piriton and Hydrocortizone before starting to administer the herceptin, I have to stay the whole day again and hopefully that would do the trick, they told me the shivering and raised temperature were side effects but they had never experienced anyone having the same reaction as I did. I am now terrified to go back for fear I have the same happen again.

Having looked through some of the posts on this forum it seems that most people have had little side effects from herceptin, is there anyone who has had this same experience?

Lizx

Hi Liz,
The reaction to my first herceptin wasn`t as bad as yours but after I got home I felt very sick and VERY cold.

I was absolutely shivering and vomiting. I went straight to bed with extra duvets and hot water bottles and stayed there until the following morning.

Next day I was fine, I had a follow up phone call from the hospital and they told me the first dose was a loading dose …about a third stronger than normal.

I have had two treatments since and have been absolutely fine , no side effects at all,

Good luck,
Jan x

Dear Liz

I’m really sorry to hear that your first experience of Herceptin was so horrible. Our bodies can react in really odd ways and you may be completely fine next time. I can see that the hospital have said they will give you piriton next time - this is a good thing because I had a very similar experience during my treatment and I was pumped full of piriton, steroids and paracetamol - twice but thankfully the rest of the Herceptins were fine - I’ve now completed the course and am fine. I know it’s scarey but like I said you are going to receive piriton first so that should stop any reaction you may have. As Jan has said, the loading dose (first dose) is the strongest and so maybe this is why you reacted the way you did.

Wishing you all the best
Ruby xx

Thanks for your replies, I feel a little better knowing I am not the only person this has happened to. I have downloaded the information sheet and it seems that vomiting and diarrhoea can be some of the side effects although it does say mild. I feel I can cope knowing that I am not experiencing something which (although extreme in my case) this can be a side effect. I am praying the next time wont be so bad.

Thanks again!
Liz x

The same sort of thing happened to me the first time I had herceptin and the second time had a feeling of mild flu like sypmptoms for about an hour. I’m now in my third year of herceptin and am fine apart from a runny nose the next day after treatment.
What a horrible thing to go through on your first occasion. I really hope the future doses are more tolerable.
All the best
Kate