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?
Thanks
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.

Dawn
xx

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to hear that you have been on herceptin for so long - I presume it is still working well for you or they would have withdrawn it!!?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.

Dawn

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