Sisters with Mets...should I stop Herceptin?

[Ellie F]

Hi kstrahm
I have been on herceptin since 2008 and totally understand where you're coming from. Most of the symptoms you describe are the same as I am experiencing. The only difference seems to be that my neuropathy is not as severe as yours.i truly believe that herceptin side effects are cumulative.
The question of staying on or coming off herceptin is so difficult. My own onc believes that if you are NED at stage 4 for over 5 years then its time to come off. He says he has a number of patients who have come off before this time and remained cancer free and others that did herceptin to five years and also remained NED. It very much feels like this cancer journey is a lottery.
Good luck with your decision, please let us know how it goes
Ellie