I have been stable for 9 years on Herceptin after SBC diagnosis in 2006. My Oncologist has said that they are thinking of taking me off Herceptin in 12 months time. Her reasoning is that my other organs, ie heart, is deteriorating, but in 9 years it has hardly deteriorated at all. I can’t help but feel that the only reason to do this must be either, money, or, they want to see what happens, ie, turn me into a guinea pig. They said I’m not the only one in this situation. Is there anyone else in this precarious position, would love to hear from you.
Can you get a second opinion?
Chris I was stable on herceptin for 10 years. My heart remained reasonably stable on MUGA scans. If that is the reason they are giving you then you need to ask why they are saying this. Do you have a PALS in your hospital? If so it might be a good idea to have a chat with them. It is a bit strange that they are talking about ‘maybe taking you off it in 12 mths time’. A year is a long time in SBC terms and I think she is a bit naughty to cause you unnecessary anxiety telling you this.
In the past year I have been taken off herceptin because they think I have very slow progression with risk that a tumour on my spine could compromise my spinal cord. I have been switched to kadcyla which is part herceptin. It is proving a problem after a year as it is dragging my platelets down and if things don’t improve I would have to come off it and would not be allowed to go back to herceptin and that decision is all about funding!
Dawn
xx
I am on long term Herceptin and Pertusamab since January 2014 with my condition stable. At my last oncologist visit she said they won’t change anything whilst it is clearly still working. The results of my heart tests are good although the last test was down by 1% but the oncologist said it would have to get quite bad before they would stop the Herceptin while it is still working. Obviously not as long on it as you, but definitely a different message.
can you get a second opinion on it?
I’ve been on the standard 3 weekly shots ever since 2011 when I was dx with both primary and secondary breast cancer, my heart scans have been good and I’ve been stable when I asked onc about when they might take me off of it I was told it would come back more aggressive than before! However, I have spoken to a woman on the american breast cancer forum who had been on it for 13 years and took a break who is still cancer free and not on it anymore as with everything connected to this disease we are all individual and react in different ways. I would definitely look into PALS at your hospital to help you with this. Hope you get some help soon xxxx