long term herceptin?

Hi - are there many other people who have been on herceptin for a number of years?
I have been on it for 3 years now (four if you count adjuvant)with no problems - but suddenly after my last dose I got all shiver/shakey and slept for about two days! Only just coming round now and still feel strange.
I don’t really understand it - has anyone else had problems after a period of not having them?
Justy xx

Hi Justy,

I am another one that has been on herceptin long term. I started in January 2004 - five years now. I hope you are an exception cos I don’t fancy having problems with it. I have noticed the odd cycle where I am more tired than usual but don’t know if that has anything to do with herceptin.


Hi Dawn
That’s great to hear that you have been on herceptin for so long - I presume it is still working well for you or they would have withdrawn it!!?
My onc says she will probably review it after five years - but generally they don’t know enough to know how long I should be on it for (I am currently NED but only because I had all my tumours removed!)
Anyway it’s nice to know you have been on it for so long with no problems. Hopefully my last episode was just a blip or maybe I simply had something else brewing.
Do you think you are more tired than before? I think I have been trying to deny the fact that I am - but I do rush around alot as if I am on nothing, and should maybe slow donw slightly, not sure!
Justy x

Hi justy,

My oncologists feeling is that so long as my secondaries are kept in check he is happy for me to stay on the herceptin. As for tiredness :slight_smile: sometimes i need a sleep during the day but generally i think it is now due to medication - like morphine. Then again I am not getting any younger at 64 and my OH and I make a good pair with our ‘power’ naps !!! I dont do an awful lot outside of my armchair these days.


Hi Dawn
Power naps and a comfy armchair sound like a very good idea!
Thanks for the message
Justy x