Coming off Herceptin

[jolly_tots]

Is there anyone out there who has chosen to come off Herceptin?

[Hidden]

I haven't chosen to come off so can't help on that score, however I am 4 injections of it away from completing the years course of it (18 all said). Are you having it and considering coming off it then? I felt like I wanted to in the early days of having it but I'm used to it now and I've read so many wonderful things about it that I've not been given a good enough reason to come off it. A lady I know in her 30s had to be taken off it when she had BC few years ago, as her heart function depleted and is now on heart pills rest of her life, which hearing this did make me panic but I've been fine on it and am near the end!

[jolly_tots in reply to Hidden]

Thank you for your comments. I don't want to wait until my heart fails lol i am on my 65th herceptin and now have no measurable cancer. Its gone out of my liver and my lymphs leaving residue in bones and the original breast tumour which is also not showing on CT scan. I know there is no research on coming off it. My consultant laughed when I suggested it but said it was my choice. Pretty scary choice though.

[Hidden in reply to jolly_tots]

Blimey....65 rounds of herceptin!! You deserve a medal, I'm not ever going to complain about having 18! Great to hear its done such a wonderful job for you, thanks for sharing that x

[jolly_tots in reply to Hidden]

I remember asking for a medal when I had my tenth lol

[Emmaedeering]

Hi,

I had to come off Herceptin after four rounds of it due to developing cardiomyopathy as a result of it (quite a rare occurrence as far as I know). That was four years ago and thankfully I am cancer free and my heart is back to normal (although I'm on heart medication too but it's a small price to pay). Can I ask why you want to come off it? If I had the choice, I would have stayed on it, it's another barrier to prevent the recurrence of cancer. Best of luck in your treatment.

[jolly_tots in reply to Emmaedeering]

That's great news! Well done! I'm on my 65th herceptin and don't want to wait till my heart fails before I come off it. My results continue to improve and I have no measurable cancer at the moment. There is no research about coming off herceptin I just wanted to find out if anyone had had a positive outcome and obviously you have (even though it must have been a pretty scary journey). Thank you and I hope your health continues to improve.

[BernM59]

My goodness 65!! I am in the last third of one year of herceptin - 7 more to go! I hate it - body swells up but my heart has been fine - they do an egg every few weeks... Hat off to you for doing 65 - and congratulations on achieving cancer free status..... I can understand your reluctance to come off after all this time - maybe get another medical opinion on it?