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I've been on Herceptin for Stage IV since January 2001, and had a port placed shortly after starting on Herceptin, to save my veins in my right arm for emergencies as I have lymphedema in my left. I'm on my third port(!)because I wore out the first one, we didn't like how the second one was positioned so had it replaced with the third one which is now one and a half years old.
Do your research before going off Herceptin. It wouldn't hurt to get a second opinion. Even after I was considered NED in August of 2001, I continued on Herceptin every 3 weeks and when I eventually recurred in spring of 2004, the cancer was very slow-moving, totally unlike the first recurrence. My onc and I attribute this to the Herceptin continuing to "work" in spite of recurrence. I am starting chemo again tomorrow for my 3rd recurrence which again is acting quite sluggish as it tries to stage a "come back". My onc would only consider taking me off Herceptin if I was NED for a few years, and ONLY if I wanted it.
He has also said that if I were likely to have heart problems, it would have shown up by now, but we continue to monitor with Echo or MUGA every 6 months. At least one person on this site has temporarily stopped Herceptin due to heart trouble, had the heart repair after a few months, and then started Herceptin again with no further problem. So that's possibly an option if you DO develop trouble.
I think long term Herceptin along with great quality of life is doable; Ginger Empey, a member of this group, has been on Herceptin for 10 years! You can read about her by going to the Home page, then to Community, then Member's Stories.
Good luck with your decision, I know it's not easy.
<3,
Lolly
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