Allergic to Herceptin

I had my first Herceptin approx 8 months ago, during which I had an allergic reaction to it: shivers, high temperature, not able to stop shaking. From my 2nd treatment onwards I’ve been given pre-meds to counteract the allergic reaction, and the treatment is given over a longer period than normal. Over the next 6 months or so I seemed to cope ok with the above combination (still get incredibly cold during treatment).

I’m now at the stage though where recovering from each treatment takes longer - over a week last time. I have the extreme cold during treatment and then major fatigue for over a week. It seems to be taking longer to recover every time.

I’m interested in any information you might have in allergic reactions to Herceptin and possible side effects.

Thanks.

Hilda

Hi Hilda

I had my first 3 Herceptins together with chemotherapy and thus was given a large dosage of steroids to prevent any reactions and so I was fine and had no problems. I then subsequently had Herceptins 4 and 5 on their own with no steroids and was fine. After that my Herceptin was stopped as my white blood count had plumetted and there were concerns about my general health as a result of that. When I was finally allowed my 6th lot, I had a reaction to it at the time of having it (faint, blood pressure and pulse racing, red blotches on my neck) and it had to be stopped briefly before it was re-started much more slowly and then I was fine. It was all a bit scary. Since the 6th lot, I’ve been in hospital with an infection and a white blood count of 0.3 so the Herceptin has been stopped again. Nobody knows if it’s because of the Herceptin that my white blood count is low but I did have 2 months from the one in January until the one in March so you would have thought things would have sorted themselves out by then. Anyway I’m seeing the oncologist tomorrrow to see if my white blood count is any better (I’ve had an injection to boost it) and in the meantime, if I am allowed it, I am nervous because of the reaction I had last time. The worst thing is that i really want it as I believe it’s a crucial part of my treatment. Anyway like i said difference side effects to you but side effects nevertheless.

Best wishes

Ruby x

am due my first herceptin tomorrow and was told that most people don’t notice the cold symptoms my consultant seemed more worried about affects on the heart

I had a low temperature for my first ( the loading dose) and was very cold and shivery but fine after that. I had my fifth last week and started to get cold in the evening. I made myself a hot water bottle and was fine again. I do get painful leg joints and the runny nose as well though.

best get some man size tissues the hey

Ha ha it is even worse it you have lost your nose hair through chemo. Watch out!

This is probably not what Hilda needs to hear - not that I am belittling anyone who has a reaction but hope to reassure newbies to the treatment - but I have had few reactions to herceptin

I had number 7 today. I feel a bit fluey a few hours later but paracetomol puts that rigth.

Love to all going through this c*ap

Sharon x

Don’t intend to upset any one at all-- obviously am a newbie to the treatment and l will not under estimate my reaction to it

I had my first herceptin last Friday, following a cycle of taxotere on the Thursday, so was interested to read your comments.Am still trying to figure out which drug is causing which symptom, but…

I too have been extremely cold, and shivery-simply can’t get warm- no matter how many layers I add! It’s bearable though-just amazed at how icy I am to the touch.

Have had 4 lots of Heceptin and have now been taken off it because of my heart. The Muga scan showed a problem. I have to wait for three weeks and then have another muga scan. Obviously i am really worried. Has any one else had this problem?

Mary 2

The problem with Hilda’s post is that it is not inviting those of us who have had no problems with herceptin to contribute.

I’m interested in any information you might have in allergic reactions to Herceptin and possible side effects.

It seems to me that is what those who have contributed are doing. I understand what Sharon is saying and just want to say to any newbies reading this thread that there are many of us on the forum who have herceptin without any side effects. I have been on it long term - since Feb 2004 and never had any problems. At the Marsden where I am treated they still infuse the drug over 90 minutes even though the regs governing the administration of herceptin have reduced the time. I think in hospitals where this is happening they are giving pre-meds to alleviate any allergic reaction that might happen.

I think too that some problems are experienced because a lot of you are being put on herceptin alongside taxotere or very soon after completing chemo and have hardly had time to get back on an even keel after that.

dawnhc

hi Mary
i was delayed my herceptin as chemotherapy had caused me heart damage, i had a muga scan in jan and the reading was 47 i had to wait until march and my reading was 64 i have heard a lot about muga scans varying a lot whilst on herceptin, lets hope your next reading will improve
galen x

Hi ladies

I am a newbie on a Herceptin started my first 1 two weeks a go. I hav’nt had any side affects as mentioned go for my 2nd one next week.

The only thing that i have noticed is when i retire to bed, i wake up feeling very hot and sweaty like having the hot flushies, i know this is a lot to do with the chemo, but now i get an iritation on my forearms that i have the hurge to scratch i dont know if its the herceptin or the radiotheropy, as i finished this 3 days ago. As any one else experience this ! I take a long time to cool down before i can settle. ( may be it’s just me )

hi all,

I’ve had 4 x herceptin and have noticed that the last time I had it I’ve suffered complete knackerisation, freezing to the point of teeth chattering, and nausea - even the smell of some foods triggers off the throwing up. It seems to last for about a week, then things calm down a bit…though the tiredness remains, which is annoying as I want to do so many things yet seem to be left in nothing but a ‘dreamlike’ state to do them in! Oh well, I suppose you have to take the good with the bad but I must admit, it’s damn hard to be ‘normal’ at the moment…still dreaming of super-happy, super-healthy lifestyle though! (preferrably still on an island!))

PS: If they told us everything, we’d be put off! Just remember, you are not alone, you are a survivor, and you CAN fight back…‘live with wolves and you learn to howl’ (I don’t know who said that but I can go with that x)

XXX