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

[kstrahm]

Hi Ellie - thanks for your response. It is helpful to me to know that others are experiencing neuropathy as well. When it first started for me I think it took a while before my onc. would believe that it was from the Herceptin.

It just seems to me there is not much research out there for people who have taken Herceptin long term and how it affects our bodies. I as you truly believe it is cumulative. I do hope that your neuropathy does not increase as mine did.

I will be updating here over the months as I get scans and let everyone know how it goes. I hope that all goes well with you and that if your time comes to stop Herceptin that you will know when and will have peace about it. It is encouraging for me to hear that your onc. has had some patients off after 5 years that are still NED. I think you are right it really does seem to be like a lottery in this crazy world we call cancer.
Hugs to you!