[Lolly]

Hi; Cathy is right, I've had recurring disease in my neck, supraclivacular and right axilla nodes, so based on that have been receiving Herceptin maintenance with/without chemo since 2001 for this type of "systemic metastasis". I have had various degrees of response, ranging from complete response(no evidence of disease) to stable disease, but I've always remained on Herceptin with the only change being whether or not we add chemo in for extra punch as I seem to need that occasionally to keep things in check. My onc and I view my situation in this way; I may never be cured by the standard definition, but I have a chronic disease which so far is manageable and treatable with ongoing Herceptin and chemo. I have excellent quality of life, and my goal is to live out a normal life.

I agree with Cathy in that I would be asking your oncologist some hard questions about why you would discontinue Herceptin after one year when you are diagnosed as Stage IV. Ongoing maintenance Herceptin is "Standard Of Care" for Stage IV disease.

Hope this helps, don't hesitate to ask more questions and especially research this site for articles to print out to show your onc, if you feel you need to stay on Herceptin and need more ammunition. The time to make that decision will be when you've been on Herceptin for the year that's been recommended, and if you're in complete remission(meaning absolutely NO EVIDENCE OF DISEASE or NED), and if YOU are comfortable going off Herceptin. It's become something of a security blanket for many of us Stage IV'ers, but the fact is that some of us do have evidence of resistance to Herceptin after long use, meaning that we need chemo added in more often to help Herceptin do it's job. There is a school of thought that says, if you can afford to take a break from Herceptin before you develope resistance, then if you have a recurrence it will work as well as if you've never been "exposed" to it.

This is a big decision and requires total open discussion with your oncologist.

<3 Lolly