Thanks for sharing your experience, its an inspiration to those of us who are on indefinate herceptin. I have been on herceptin since 2008. I have SBC in my bones and liver, DX age 42. Last scans in March 2011 showed improvement. I will get scan results week of MRI scan on my liver, so keeping fingers crossed that everything is still ok. I am also on Tamoxifen.
Congratulations on your 100th herceptin. I asked my onc the other week what was the longest one of his patients on herceptin has gone without progression. He said 4 years. You are well past that milestone.
Hi I have not been on the Forum for a long time so thought I should update. I am still on Herceptin - over 7 years and just awaiting scan result. I have not had a scan for a year so hoping all is well - coping with waiting for scan results never seems to get any easier! Herceptin has been great for me. I have just been on to the USA forum for Her2 support group and discussion seems to be that there is consideration to stopping Herceptin after some years by some oncologists but others are very much for continuing.
Is anyone aware of research into the data about long term herceptin?
7 years on herceptin, that’s marvellous. I have been told by my onc that I will be on herceptin indefinately. From what I can see from other patients, if it progresses he usually adds capecitabine and continues with the herceptin. I think I read somewhere that those people who continue with herceptin post progression achieve better outcomes. I am not sure where I read this so not able to find the source.
I am aware of one person who chose to stop herceptin after 4 years without progression, however this is not a choice that I would make.