Member
Posts: 567
Registered: ‎01-05-2012

Re: Herceptin without chemotherapy

Hi wanted to share my experience of the wonder drug tht is Herceptin. I've been on it for the past 2 years and due to secondaries will be on it forever. I am happy to report in my experience there are hardly any side effects associated with this drug (most of my problems are attributed to previous chemo and taking tamoxifen) I get a bit stuffed up and and nasal during the infusion this is eleviated with taking a sudafed tablet, my heart scans have all come back normal. Really hope this helps you. xx
Member
Posts: 6
Registered: ‎22-07-2013

Re: Herceptin without chemotherapy

Thanks everyone for your comments. I have an appointment with my oncologist tomorrow and a list of questions. It has really helped to get your views. Will let you know what I decide and how I get on.
Member
Posts: 608
Registered: ‎01-05-2012

Re: Herceptin without chemotherapy

I think lapatinib is only licensed for previously treated advanced or metastatic BC. Although triple negative BC doesn't benefit from hormone therapy or Herceptin patients usually have a really very good response to chemo whereas ER+ and HER+ respond better to hormone therapy or Herceptin.
Melxx
Member
Posts: 736
Registered: ‎21-07-2013

Re: Herceptin without chemotherapy

I would go for it. Yes HER2+ is an aggressive one because of over expression of protein but Herceptin works by binding to the protein on surface an stopping cells from dividing. I was scared when I was told mine was HER2+ but apparently thats better than a triple negative lump that sits there doing nothing and not reacting as well to the meds.
There is another similar drug called lapatanib ( or something like that) but not sure the situations that is suitable for
Only bind with herceptin is it is intravenous as it is nt a drug as such it is an antibody. The guy who invented it few years ago is confident there will be a cure for bc within 10 years!!!

I havent started mine yet but am grateful mine is her2+ in a weird way as I know herceptin will open up a can of whopp ass on it
Member
Posts: 513
Registered: ‎01-05-2012

Re: Herceptin without chemotherapy

Go for the herceptin. For most people the side effects are minimal and it gives you a bit of peace of mind knowing you have something on your side to tackle your HER status.
Member
Posts: 608
Registered: ‎01-05-2012

Re: Herceptin without chemotherapy

Hi If you are boarderline +2 then a further test should be done called a FISH test which determines if the tumour is positive or not. I know there is a study not sure if its started or if they are still looking for patients to take part which will determine if those with HER 1+ and 2+ would benefit from herceptin. My HER2 result was 2+ I then had the FISH test which came back negative. I do have a little thought in the back of my mind after reading about the possibility that HER 1+ and 2+ might benefit from Herceptin but I am nearly 6 years from diagnosis and fine so not really that worried. I don't think they give herceptin without chemo.
Best wishes Melxx
Member
Posts: 414
Registered: ‎01-05-2012

Re: Herceptin without chemotherapy

Hello Lola (Linda) - I am glad to know that the chemo has finished for you!
Patlilmay - like Lola, I have recently finished chemotherapy and I am carrying on with Herceptin alone now - dose number 10 coming up. Now that the chemo's finished it's fairly easy going for Herceptin. I have mine every 3 weeks on the chemo bus - you can also ask about having it at home, instead of at a hospital. I don't get any problems with it.
Even though you are grade 1 with no spread to lymph nodes (I was grade 3, I had node involvement) your oncologist thinks Herceptin on its own will benefit you because of the HER2+ status. As Lola says, HER2+ is aggressive in that it has a higher chance of recurrence/spread. There is always a tiny risk of cells being left behind after surgery/radiotherapy, and if cells are HER2+ then Herceptin acts to stop these fast-dividing cells coming back. You could check with your onc. if you were borderline(2+) or strongly positive(3+) for HER2 protein over-expression. Also, what percentage benefit you'd have if you took Herceptin. I would say the benefits of Herceptin definitely outway any side effects.
Jen
Member
Posts: 1,085
Registered: ‎13-01-2013

Re: Herceptin without chemotherapy

Hi Patlilmay,

I have had 6 doses of Herceptin so far, alongside my chemo. My chemo is now finished and my next one will be on its own.

Her2 positive is an aggressive one I'm afraid, and as it has been offered, please think carefully before refusing. Herceptin is the wonder drug for HER2 positive tumours. Did your oncologist tell you what percentage benefit it would have? If not, I suggest you ask him. Whilst it works better along side a Taxane chemo drug such as Docetaxel, it also works without chemo, but did you ask why you aren't to have any chemo with it?

The side effects from Herceptin are very slight, often none at all. It can be harsh on the heart, but you will be given heart scans at regular intervals and they will keep a good check on you throughout. I know it is a bind having to attend every 3 weeks for a year, but not that much of an inconvenience when you think of how it may be preventing any unwanted recurrences.

The first dose is the worst. Only because it is a loading dose so it takes an hour and can give you a headache/flu like symptoms. My oncologist said to take 2 Paracetamols an hour before infusion and continue as necessary for a day or two afterwards. I've done this and have had no bother at all. Subsequent doses only take half an hour and Paracetamol can also be taken beforehand. If you have a holiday or something planned that might interfer with your dose day, they will work round it. You can miss up to one week but any more than that you have to have another loading dose.

xxx
Member
Posts: 7,967
Registered: ‎01-05-2012

Re: Herceptin without chemotherapy

Hi Patlilmay

Whilst you await replies from your fellow users please feel free to call our helpline to talk through your concerns, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

We also have an 'Ask the Nurse' email service and you can read more about this here:

http://www2.breastcancercare.org.uk/breast-cancer-services/ask-nurse

Take care

Lucy

Member
Posts: 6
Registered: ‎22-07-2013

Herceptin without chemotherapy

Diagnosed with Grade 1 tumour. No lymph node involvement. Had lumpectomy followed by 18 sessions of radiotherapy and taking Arimidex for 5 years. Now been told the tumour was HER2 positive and have the option of Herceptin without chemotherapy. Will the benefit outweigh the side effects and the fact this treatment is once every 3 weeks for the next year. I had thought I was back on track and this has really unsettled me. Grateful for any advice. My mind is going round in circles.