Today I had a strange phone consultation with my oncologist who wants me to stop having herceptin. I’ve been on it for 15 years as I had spread to both lungs and liver, the herceptin has kept the cancer at bay all this time and now no longer shows up in scans (although the same oncologist told me years ago that the cancer cells are always gonna be there just we can’t see them as they are that small). I’m worried sick about this, I don’t want to upset the apple cart, messing with cancer is serious business. If I come off herceptin, will the cancer come back? If so will it be unresponsive to herceptin and maybe mutate (initially I was told by my first oncologist that in his experience coming off herceptin would bring the cancer back worse than before). I also feel this isn’t about my health but more about money. Are there any other patients on herceptin for life and have had the same? ie: coming off Herceptin. I was told I’d be on it for life. Just to be clear I have no problems with my heart and manageable side effects, so it’s not a clinical reason for me coming off of it. Also can my oncologist force me off of the drug against my wishes? Thanks in advance for any advice, I’m totally shocked and worried sick.
Hi, while I wish to be in your place one day, I would really push back on this if you do not feel comfortable. I don’t think they can force you to stop the treatment if you do not agree. I wouldn’t if I was you especially as you don’t suffer massive side effects. Was any justification given either then you have been on it for so long and did they provide an answer to your questions? I am aware of a trial, currently ongoing, where they are studding exceptional responders (either stable or those with no evidence of active disease for a number of years) once they come off the treatment, is this why they proposed you to stop treatment? Did they speak about Signatera testing and regular scans for monitoring?
Thank you for your reply ladybug. I’m not aware of a study and actually feel like I’m a guinea pig in relation to this. I have decided I’m not ready to come off herceptin, yes I’ve been on it a long time and yes it is responding well, however, I don’t want to rock the boat and start messing around with it, and definitely don’t want to see if the cancer comess back. It’s working and that’s all that matters to me if it was failing me then that would be a different story. Fingers crossed for you that you have the same good response I’m having.
Since typing this I’ve found other woman who have been on it 16, 25, and 29 years.
This does sound v odd. I would get a second opinion.
I’m on a different drug, palbociclib, but I’ve been on it for 5 years and been told I won’t come off it until I get growth or can’t tolerate it any more.
Hi, I’m currently on phesgo (herceptin and perjetta) and have been for five years with scans NED. It has been mentioned the only way they could find out if my secondary cancer was still there would be to stop the treatment. I don’t want this and my oncologist agrees, also if they stop it you cannot go back on it due to NICE guidelines if there is any sign of disease. I would ask a lot of questions as to why and push to stay on it, where in the country are you ? It must be very worrying, please let us know how you get on x
I’m in South West, Devon, I’ve decided I’m not going along with her plan, I’m not going to be her guinea pig on this, it’s saved my life so far. I don’t want to stop it and then wait and see if it comes back, I will be a nervous wreck. I’ll keep you all informed. Xxx
@sarahlousie do you mind me asking if you only had lung mets or also liver? If liver, did liver mets disappear while on phesgo only or did you perform any local intervention like an ablation? It is so inspiring to hear phesgo has worked so well for you and fingers crossed for the rest of us!
I had lung mets too many to count on both lungs and a mark shows up on my liver but it’s in such a tricky position they can’t determine exactly wether or not it’s a liver met, we assumed it was because of the lung involvement. Herceptin has been working on all mets so far along my journey. Also lymph nodes which were removed during mastectomy number 1. X