Has anyone been on this drug? My oncologist suggested I switch to it from Herceptin (am also taking Capecitibine)and was looking into if I can have it but I see in today’s papers that NICE have banned two breast cancer drugs as they are too expensive - one of which is Lapatinib!

I am on avastin which is not on NICE approved list but as my oncologist backed me and I went to the media I got it and have been on it for over a year. You need to ask your onc to put you on it he applies to your p.c.t. they refuse you appeal.
Love Debsxxx

Hi i was on the trial for Tykerb/ Lapatinib just after xmas last year , i was having dreadful side affects so they took me off it after 2 months , it showed some shrinking in the liver but not the lungs . I wanted just Tykerb but they wouldn,t allow it . Hope this has helped you a little good luck .


I was on the LEAP trial at the Marsden for almost a year (Lapatinib/Capecetebine). Unfortunaltey theside effects eventually became too much for me but I did have a very good initial response. I could not have the Lapatinib without the capecetebine.

I’m now back on herceptin along with hormonal!

Best Wishes,
Jackie x

I was diagnosed with secondary breast cancer in Aug 2008 and following radiotherapy on the brain tumours was put on capecitabine and Lapatinib together with steroids. At Christmas I came off the steroids and in Feb I stopped the capecitabine though stayed on lapatinib. In March my insurance company refused to pay for the lapatinib as is a long term preventative so I am now paying for it myself at £1400 every 3 weeks. Can anyone let me know if I can get lapatinib more cheaply or even free?

i can’t tell you where to get this but i do know it’s disgusting that you have to pay that kind of money to have something that should be rightfully yours. It really makes me angry that people can take money and make money out of someone else’s suffering. I am so sorry that i can’t help you but i wish you well in your search.

Hi there

My mother has managed to get Tyverb on NHS - not as a trial. We live in Scotland which IS different but surely this is a president set now!?? Please visit press and journal web site ( newspaper ) and look for our story printed last week - Nicola(me)and Jackie (mum) we did this to try to help others get the drug!

Im now trying to get Tyverb with Femara coz I think we may be coming to the end of the effectiveness of Tyverb within maybe 6 months or so.

I just e mailed GSK constantly, e mailed my MP, Royal Marsden hospital ( where we got a 2nd opinion) and somehow we got it!!!

Good luck!!

Feel free to contact me anyone

Thats good, your persistance paid off. Was the Royal Marstons 2nd opinion to try and get Lapatinib and was there opinion different to that of your usual oncologist.

I was on this prior to my main treatments for bc.
To date its been used in people with secondarys or reocurances but due to good results they are seeing if it helps shrink growths in pre op people.
I was on it for a month and it worked well on me (almost 2/3 shrinkage), aparantly not yet sure why but does not always work for everyone - hence lots of bloods for DNA and stuff, side effects were initially horroble (diarrhoea, nausea) but improved as body got used to it.
Always worth a go if they are offering it too you, dont think it does too much harm in comparison to all the other s**t they pump into us to get rid of this disease. If they try to ban you fight it your life and quality of is worth more than money, hope if you do get it it works for you.
All the best g