Stopping Herceptin after 10 years stable...

After being stable for 10 years on Herceptin with secondaries in the Sternum, my Oncologist has now suggested I stop treatment all together. This terrifies me as there has been no severe side effects, ie, heart problems, so I can’t see any advantage to me by stopping. Is there anyone in a similar position? Not sure if they can just refuse me treatment or not.

Hi I’ve just started herceptain and perjeta so I’m new to all this. I have read a few posts on an American site where people have stopped and done ok. I would be like you if it was working I’d rather keep taking it. Have you asked if you would be able to go back on once you come off ? Best wishes Julie X X 

Thank you for your replies Julie and Lynn.  Julie, I wish you all the luck in the world, apparently Herceptin and perjeta are an excellent combination drug. Lynn,  your treatment sounds extremely positive. I have just had another ct scan and heart scan and everything is still clear, apparently the tumour in the sternum now just looks like scar tissue. I know I’m very lucky but am very apprehensive about coming off a drug that has kept me alive for 10 years. I realise I’m going to have to talk in more detail about this with my oncology team and I will let you know how that goes xxxxx

Thank-you hope all goes well and tell the oncologist how you feel maybe ask for a second opinion somewhere X X 

Hi Chris, like you I would be very apprehensive at stopping a drug that had kept me alive for 10 years. And like you I was on herceptin for 10 years! although my bone mets were very extensive. I believe too that I am still here today because of that drug. I had been on several chemotherapies from 1990 to 2004 but none of them had held back the spread of breast cancer at the primary stage. It was early days for herceptin in the UK and my onc must have been delighted when he thought of checking my her2 status and found it was +++. At that stage I had a lot of lymph node activity around the chest and neck area and at the start of herceptin they all shrunk and have never given problems since. My situation does differ though because my onc felt that although it was very slight there was some progression and if that was to get any worse I would be heading for nerve root compression and with a lumbar spine in quite a mess surgical intervention wasn’t really an option. The one thing that really bothered me and still does is that it would be highly unlikely that I would be allowed to go back on herceptin although my Consultant has said he would appeal if it came to that. I have been on Kadcyla, which is part herceptin, for 15 months now but am struggling with low platelets so can only have it every 6 weeks . So do check if NICE would allow you to go back on herceptin if you needed to. Hopefully he is just testing if you would like to stop treatment - so if you are not happy with that make sure he knows.




Thanks Dawn for your reply. My goodness you have been through the mill, but what a wonder drug Herceptin is. I remember when I had my primary they were only giving Herceptin to people with secondaries but they asked me if I would like to join a trial for it, obviously I said yes but they then said I didn’t qualify as I had a breast in plant after my mastectomy and they could not see my heart. I’ve always thought that if I had been on that trial I might never have got secondaries. Anyway, I’ve learnt that it no good thinking about what if, only what is. One thing I’ve realised is that I need a very good back-up plan if I do decide stop. Hope you continue to control this bloody disease for many more years Dawn, you are an inspiration xxxx