Stopping Herceptin v.early, anyone had similar??

Hi ladies,

I started Herceptin in Jan and have had 3 so far. Following a v.poorly episode early this week I went to A&E which resulted then in a nice long stay in hosp for me while they tried to work out what was wrong.

It turns out I have heart failure which they believe is either due to the Herceptin or chemo. I was due my 4th Herceptin on thurs but obviously this had to be cancelled. When I first started my LVEF was 72% which was excellant and I was due to have another echo on March 20th.

My medical cons reckons that I will almost certainly have to stop Herceptin now, and I have been put on a load of meds for my heart. He is gonna liaise with my onc so I am expecting to have to see him asap to discuss.

As I’m obviously HER2+, the thought of not being able to have my ‘insurance policy’ is v.scary. Is anyone else in a similar position at all??

I did ring the helpline and they were a great help, and on mon I’ll be speaking to my bc nurse but in the meantime it would be great to hear from anyone who has had a similar experience.

Many thanks in advance,

Take care all,


Hi Kelly,

Sorry this has happened.

I was taken off herceptin, I’d had @ 8 cycles I think, for different reasons though.

I developed a local recurence 3 months after finishing rads and they said they were unsure whether the herceptin was doing the job without the aide of chemo, or indeed if it had ever worked at all. I am obviously HER2 and this worried me too. I have since developed skin mets which are being controlled with hormones for now. However I was referred to the Marsden last November and they see me 3 monthly. They have said that herceptin is one of the things on the back burner for me. Herceptin is great if it works but it doesn’t work for everyone although they may tolerate it well.

Best wishes
Jackie xx

Hi Kelly

I’m really sorry to hear about the problems you’ve been having with herceptin. I think the thing to bear in mind is that you have managed to have 3 so far which is better than none and I guess it’s possible that your heart will sort itself out with the meds and that your onc will decide you can go back on Herceptin but with closer monitoring.

I’ve had 6 herceptins so far but I was taken off it too because of an extremely low white blood count. I had a bone marrow biopsy to rule out anything sinister but that came back relatively clear (there were some changes detected in the blood cells but they think that’s due to the chemo). Then they thought I had an infection that my body was fighting, then they said it’s possibly the Herceptin and now they really have no idea what’s causing it as it’s still very low (0.6). They’ve agreed I can go back on it as of next Friday. I’ve had various other tests done to rule out some kind of autoimmune disease and various other deficiencies but I’m a mystery. I kept bearing in mind that at least I’d managed to have 6 even if I couldn’t have anymore.

Like Jackie above said Herceptin is great if it works but it doesn’t work for everyone. When I was told what my treatment plan was (chemo, operation and rads and herceptin) I was told that the rads were an insurance policy so that in effect I’ve been over treated so I think that also helped me feel a little better about not having herceptin.

I wish you better and really hoping that your heart will sort itself out and you can go back on Herceptin.

Ruby xxx

iam due to have my 3rd herceptin on Monday and have been worried as i keep getting twinges and pain in both my breasts. Surgery on right one only to remove lump. also have hot flushes. anyone else have similar?
sarah 41

Hi All

Can I just say after reading this thread I am gonna kill the doctor who assured me there were no side effects with herceptin!! According to him it was just a nuisance having to go for the treatment every 3 weeks and you can just get on with your life!

Also my eldest brother who said I should think myself priveliged that I have been offered it!!!

Sorry for the outburst, must have had a bad night!

Hope you all get things sorted, mine won’t be unitl at least October so really I shouldn’t even be reading this yet!!

Ta ta


hi kelly
sorry to read about your problems, i havent seen any threads from you in a while and was wondering how you were, i have posted a thread as i cannot start my herceptin as my reading was only 48% i am going for another scan this week to see if the readings have improved, i was concerned as i finished chemo nov and i know there is a time limit, i just have to wait and see what they tell me , i hope things change for you , please let us know how you get on
love galen x

I am so sorry to hear this. You and I were diagnosed at more or less the same time, I think. But I have had 5 Herceptin doses now as I couldn’t finish all my chemotherapy because of awful problems with that, so my other treatment was all brought forward.

So far I have been ok with the Herceptin, but I do know how concerned you must be, because I was really worried when I had to stop chemo early. You may find that your heart improves and that you will be able to carry on with Herceptin at a later date. But remember that you have been able to have all the other treatment and I think you are on Tamoxifen so Herceptin is only one part of the treatment.

My oncologist told me before I started Herceptin that there was some evidence to say that 3 months of Herceptin was sufficient (because it is such a new treatment for primary BC, I guess it is to be expected that there is still a lot to be learnt about it). So try not to worry too much. I hope you will be able to see your oncologist soon.

All the very best

Hi Kelly,
I am so sorry to hear your news Kelly, and that you have been in hospital. Just wanted to send you a big hug and lots of love, Thinking of you

Hi Kelly

Just to say sorry about your news. Thinking about you.

Marilyn x

Hi Kelly,
So sorry to hear you have been having a rough time with the Heceptin - it sounds really scarey . you were always so full of helpful tips and advice during chemo. I’m sorry i can’t return the favour. Maybe once your heart is sorted they will put you back on heceptin - like one of the other ladies mentioned my onc has also hinted that a years Heceptin may be more than is actually needed - only time will tell. I think they do rather underplay the side effects of heceptin. really hope things improve soon

Hi ladies.

thank you all so much for your replies and your support, much appreciated. I’m only sorry its taken me soooo long to reply!

Well, I my onc’s secretary rang me this afternoon and said he wants to see me on monday so I have an appt at 3.30 to discuss what happens next. Turns out it could well be the Zoldadex that I’ve started having recently that is causing the heart failure and not necessarily the Herceptin. Anyway, I guess I’ll find out whats what on monday.

Thanks again and I’ll let you know how I get on,

Take care,


Hi all,

off to see the oncolgist shortly. Bit nervous that he is gonna tell me that I can definately no longer have Herceptin and that my prognosis is therefore poor. Guess I’ll just have to wait and see!

Take care & wish me luck!


Good luck

Marilyn x

Good luck Kelly,

Sally xx


I have often followed your posts and really hope you get the answers you need and want today.
Big cyber hugs.

Take Care, love

Anne x

Hi Kelly,
Sorry to hear about your recent happenings. I was just wondering how you got on today. Really hoping it’s some definite and good news.
love Jacquie x

Hi Kelly,
Also wondering how you got on today, really hope it was good news for you

Hi Kelly

I’m also just wondering how you went on yesterday.

Marilyn x

Hey Kelly

We’ve been through quite a lot of this nonsense together, similar age and had v similar diagnosis as I remember… What a total pain, so sorry you’ve been poorly and now have this worry about treatment. My echo results have been up and down - you might find it pops back up again.

When mine dropped I was worried about the same things you are re insurance and stopping drugs etc. My onc said the plan is for you to live for another 60 years or so, so we don’t want to wreck your other organs in the process! Also to remember that they removed the cancer - even your chemo and rads were insurance after that as the cancer had gone. You’ve had lots of stuff chucked at it and stayed strong and chirpy throughout.

You’ve been a huge sunny support to me on here, I really hope you’re bearing up. I saw your post about your friend the other day and was actually logging on to pass on my condolences when I saw this post. So sorry things have been tough recently

Lots of love, take care

Liz xx

Hi ladies,

thank you so much for all your messages of support and for thinking of me when you’ve all got more than enough to think about already! Well, the news was as expected but not what I wanted to hear. No more Herceptin for me, ever! My onc believes that my heart problem was already there but lying dormant, and the chemo followed by the Herceptin has exacerbated it. He says there is no way I can have the Herceptin as it is known to damage the heart and mine is already v.fragile.

Gutted and scared of the implications of this, but after having a couple of days to get my head round it all I know its the only option. The onc basically said “we can give you all the chemo etc in the world but its gonna be no good if you died from heart failure. We need to treat what we know i.e the heart failure, rather than treat for secondaries that aren’t there”. He was actually quite nice about it. Basically he said I would have no quality of life if I continued on the Herceptin as the damge to my heart would be irreversible and I could well end up in a wheelchair!!! I have been so focused on cancer that I hadn’t given as second thought as to how serious this heart failure is.

So, still on the Zoladex and Tamoxifen and gotta hope that that’s enough for me! They are gonna monitor me v.closely over the coming months, so hopefully if any nasties do appear they can be zapped quickly!

Thanks for all your support,

Take care,