Looking for Answers from Christine or other long term Herceptin users

[kstrahm]

1. Hi - I am new here (not sure where to post this so I this is the second place I have posted) - I am 36 and have stage IV breast cancer with liver mets. I have been taking Herceptin for this since April of 2006 so almost 6 years. My liver mets have been NED for awhile and I am starting to experience some symptoms of neuropathy in my hands and feet and my skin on my hands is peeling off daily as well as increased pain and head pain and a general unwell feeling. My doctor previously has said that I will stay on this drug forever. I will be seeing him in April and I am going to try and see if I can go off of it - I saw on another breast cancer board that Christine the founder of this board took Herceptin for about 8 years and after meeting with Dr. Dennis Slamon the oncologist who came up with the drug that she was able to stop it - I am wondering if this would be an option for me and also if I should try to go see Dr. Dennis Slamon for his opinion. I am hoping for some advice from Christine or from other long term Herceptin users. Thanks in advance for your help.

Hugs to all of you.