Herceptin infusion reaction?

NotVeryBrave · September 2017

Anyone ever been told they had an infusion reaction to Herceptin? I've been getting Herceptin since December - the first 6 times were with my chemo rounds and since then just the Herceptin every 3 weeks. I've had no problems with the infusions. I had one break of 6 weeks while they tried to figure out if it was possibly causing some joint problems I was having.

Today was my 2nd one since restarting and about halfway through the infusion (maybe 15 minutes) I started to notice that my throat felt funny. Not tight or swollen. No problems breathing. It was more like it just seemed a little odd when I swallowed. At first I thought it was maybe the cranberry juice I was drinking at the time. Then I started to notice some heart palpitations now and then, but I get those once in a while. I was kind of chalking these symptoms up to not eating breakfast, maybe.

When the infusion was almost done, they came to check on me. I decided I would ask to stay for a bit, but when the nurse asked how I was feeling and I told her - oh, boy. She took down the little bit of Herceptin that was left and starting running just saline in a separate line. She called my MO and gave me both Benadryl and Dexamethasone IV immediately as well as 2 liters of fluid over probably an hour or so. My BP was 150's/90's (it's usually 110's/70's). Then I started getting really shaky, hands trembling. I felt like the swallowing thing got worse. They put me on oxygen even though my O2 sats were 100%. Eventually my BP went back to normal and they sent me home.

Now I'm wondering if it was all in my head. Maybe all the craziness just made me super apprehensive and that's what made my BP go up and the adrenaline made me shake. It seems weird that I would have a reaction at this point. The nurse said it can happen at any time and that they will continue to give me the Herceptin but premedicate - which they haven't been doing with Herceptin alone.

Anyone else with similar results? How did it go later?

BellasMomToo · September 2017

I never had a reaction during my herceptin infusion. But they may have recently changed the formula....

Since I started herceptin-only in March, I would have some occasional, mild itching. When I had my 9th herceptin infusion (on 8/18), the chemo nurse mentioned that it takes a lot longer to prepare the herceptin because the manufacturer made a 'change'. (I didn't ask what the change was.) But soon after this 9th infusion, the itching got a lot worse. And an unusual heat wave (temps over 100 degrees) made the itching even worse. I had the 10th infusion on (9/8), and I'm still itchy. I take benardyl several times a day and it helps with the itchiness. Calamine lotion also helps when it gets really bad.

So I wonder if they changed the formula and the change is making me itch more. Perhaps a change could have cause your reaction, NotVeryBrave.

xxyzed · September 2017

I've had a problem with itching as well lately and was taking antihistamines daily for a few weeks. I've last week had my last herceptin which was a reduced dose. The last few doses were in a different bag. I didn't realise the contents within the bag were different I thought it was just the packaging that hd changed. It seems a bit coincidental. I've never had any infusion reactions to it though.

Reikion · September 2017

I had a reaction with my first infusion. I had TDM1(chemo) which is herceptin with a molecule of Emtanzine. First hour of infusion went fine, then severe chills. They stopped and gave me benadryl and hydrocortizone.

For infusion 2, they gave me benadryl and dexamethasone --- but after infusion I had a reaction to the dexamethasone. Severe itching and foliculitis --- whole scalp was itchy and severe rash at infusion site on my arm.

Used clindamycin for the dexamethasone reaction.

Went back to benadryl and hydrocortisone for all future infusions and had no problems. (17 cycles total).

I think the benadryl will prevent future reactions. Take care and all the best!

RebzAmy · September 2017

Yes, I had a year of Herceptin and during probably my 10th one I had a mild reaction where I felt a bit faint & heart rate went fast etc but they stopped the herceptin for a while, flushed it through with saline and then restarted it and I was fine. On my final Herceptin, ie number 18 - almost full on reaction - very faint, heart rate going crazy, blood pressure all over the place and came in waves and I think I had a temperature as well. I was immediately given Steroids, Paracetamol, Oxygen, Hydrocotizone all IV and was kept for a good few hours. I was told if I ever needed Herceptin again then they'd have to pre-medicate me first

NotVeryBrave · October 2017

I'm going in today for my Herceptin infusion. As usual - when I asked my MO about it, he made it seem like it was up to me whether to premedicate or not. Why is everything a choice? Aren't they supposed to know? His thought (I guess) was that maybe it was a reaction and maybe it wasn't. We could try without meds and see what happens or just do the meds each time and not really know.

I'm "choosing" to take Benadryl before I go. I figure it's pretty harmless (especially after all the other crap I've been given). If it's not really needed, oh well. If something else is needed then I guess they'll just have to handle it then.

NotVeryBrave · November 2017

Well - I did 2 or 3 more Herceptin infusions with taking Benadryl beforehand and seemed fine. Then yesterday I had the strange symptoms again (had taken Benadryl) - felt like a lump in my throat at first, then a fluttering kind of feeling in my throat and upper chest (like being too aware of your pulse). I told the nurse and they checked my blood pressure (high again) and pulse ox (normal).

I think the Herceptin is causing some kind of mild reaction and then my reaction is to get anxious which makes me feel worse and makes my blood pressure go up. The MO was planning to tack another dose onto the end of the year since I skipped one months ago due to some joint issues that I was trying to figure out. I think I'll just do the one in December and call it good.

Does this sound familiar to anyone else?

Brightness456 · November 2017

Oh my gosh NotVeryBrave, I came to the forum to see if anyone else had issues with this since it happened to me last night. It happened to me once early on when I was getting taxol and herceptin. I can’t remember if it was a herceptin week or not since they drugged me up and I was really out of it.

This time it happened, I haven’t had an infusion in over a week, so I wasn’t sure if it was related, but I never had this happen pre BC. The way you described it sounds exactly like what was happening to me except it also made me cough (not a cold-like cough) because I couldn’t catch my breath. It was so intense that I went to bed thinking I hope I don’t die and wondering if I should call someone to mention it just in case. It seems to have stopped this morning, but what an odd feeling.

NotVeryBrave · January 2018

My most recent Herceptin infusion was given over one hour and I had taken the Benadryl ahead of time. No problems!

So I'm going to go ahead and do the last one next week. Same old, same old - fear that I'll kick myself later if I don't play along and do all the treatment that is recommended. Although ... I'm not currently on any hormonal treatment which is a big no-no. I need to see what I feel like without all these things.

Herceptin infusion reaction?

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