herceptin for HER2-

Has anybody been offered herceptin for HER2-? Is it effective?


There is research being done into this issue but I don’t think it is generally offered either in the UK or the States. I am to have a liver biopsy on Thursday (after living with liver mets for 4 1/2 years) to retest my Her2 status (was originally tested as negative - and very likely still is). If it has changed at all, I will be given Herceptin and Taxol as my next treatment.

Thanks Jennywren,

Herceptin is a very new drug and had lots of publicity when it was approved by NICE. It seems to be the only drug some of my friends and relatives (who are strangers to BC) have heard of.

It’s very interesting for you to say that her2 status can change.

All the best with your biopsy on Thursday.


I’m HER2 positive and will be starting Herceptin on my fourth round of chemo. I’ve got my second chemo next week. Having port fitted this Friday.

Best wishes to everyone

I am taking Herceptin and Zometa for secondary breast cancer. I am HER2+ and hormone negative. I have had four doses and so far it is working well. I have more energy and feel much better than when I was on chemotherapy. I shall stay on it “for as long as it works” - hopefully years. Hope this is helpful.


Hi My Dx is HER2 Pos HR Pos, Tommorow I have my second sess of chemo and have also been offered Herceptin, I think my onc said I start this when my chemo has finished, although I will check this out tommorrow.

On the research I have done although a new drug it has got very positive results.

My thoughts are, I will personally take all that is offered purely because if I get secondries at least I can sit back and say I tried everything! Not, oh god I wish i´d taken that, or so and so when it was offered.

Just my thoughts…

Love Teresa xxx

With myu1 being HER2 NEG, it sounds as if she is asking if she would have the possibilty of getting herceptin? I’m sure she would want to do everything possible to avoid further problems-who doesn’t? But with a HER2- status, I think it will be unlikely (impossible?), for her to be prescribed herceptin. Perhaps she could clarify what information she wants? Knowing that HER2+ patients are taking herceptin is not addressing her worries!

There is no point having herceptin when her2 negative as the treatment specifically targets the her2 molecule and if it isn’t there the drug won’t find the cancer cells so is not effective at killing them.

It makes the herceptin very specific which means fewer side effects but unfortunately it can’t help all breast cancers.

Hi ElaineD & all,

I’ve read that some searches have shown that heceptin can also be effective for HER2-, so would like to know whether anybody has been offered the choice of having heceptin when HER2-.

I’m not sure the NICE guideline on this issue either. But it sounds like Jennywren has already answered my question. Hope that clarifies it.


i was HER2 had 6 sessions of chemo then started a course of Herceptin 18 sessions in all. My oncologist calls it a wonder drug he said after chemo it will be like a walke in the park.I have had side affects but nothing as bad as chemo.


I have just had my first Herceptin on Tuesday, 1 of 17. Could anyone tell me what side effects to expect and do they occur straight away, or do they take a few days to emerge? I have read the info that was given me on the chemo ward but just wanted to know what anyone else has experienced. Thanks very much

Hi - I had my first nearly 3 weeks ago and due to have 2nd dose on Monday - no side effects at all at this stage and long may that continue !

Hi I had lot of bone pain and flu like symptoms after first dose but it’s a big one, since then I have had similar much reduced effects on day 4 after but all diff. Have pal who gets very cold and the bone pain and hear lots of ladies complaining bout the bone pain innpartic but it’s manageable so don’t worry xx

If you are HER2+ and ER+ , how do they decide what to treat you with , ie do you get one of the hormone treatments or do you herceptin ? Anybody know ?

I am her+ and er+ and pr+, I received herceptin with my chemo(neo adjuvant) followed by 18 herceptin after surgery, I am also on tamoxifen for the hormone positive and am about to have my ovaries and tubes removed to stop the oestrogen production, if you are hormone + and her2+ you receive both hormone treatment and herceptin.
Hope this helps.

I´m ER+ HER2+ and PR++ , but did´nt have chemo so I´m taking letrozole , in fact the onc did´nt mention the HER2+ to me , only really found out when I travelled back to the UK to speak to a breast cancer nurse . I live in Spain and although I saw a nurse and a doctor every week whilst having rads , it was not a speciallist breast cancer nurse and although I did mention some things to them , to be honest they were´nt particually interested , it was as if my concerns were´nt really what they were monitoring . Don´t know . I have to say I do envy you ladies with access to a breast cancer nurse.

Hi jackwagstaff

did your HER2 result have one + this means HER2 negative, two ++ and three +++ means positive.So if you only had one + you wouldn’t need herceptin as it would be negative. confusing isn’t it.Hope I got it right i’m sure someone will correct me if I haven’t lol. Mel xx

Hi melly2 , Yes it had just the one + , as did the ER , that just had one too , or rather one also . So does that mean that I´m not ER positive either ? Cos I´ve only got one + for that , then I´ve two +´s for PR .
So what exactly am I ?

Hi jackwagstaff

Oh golly isn’t it confusing.ER+ does mean positive. I’m confusing myself now lol,it’s just the HER2 that + means negative. are you taking tamoxifen.

Mel xx

Hi Mel and Jackwagstaff

I am posting the Herceptin publication which you may find helpful to read, if you wish to discuss your queries further please do call the helpline on 0808 800 6000, its open weekdays 9-5 and Sat 9-2 although it’s closed on bank holiday Monday this week.


Take care