MAJOR clarification....

I was thinking about Herceptin in the ADJUVANT setting...OFF LABEL....NOT Herceptin in the Stage IV setting. In the adjuvant setting, there is more "caution" exerted, obviously, since there is no evidence of disease present to treat. In the mets setting, the risk envelope may be pushed more. And that is how drugs COME to the adjuvant setting...they are first tested on the metastatic population. If they work AND they are safe, then they get tested next in the adjuvant setting.

I think it is GREAT that you can continue to use Herceptin indefinitely.

Hi lauren -
I did understand that you were mainly addressing the adjuvent use of Herceptin, since I know that is where you currently stand. Just wanted to go another step and say that once you are on it - that there are only a few reasons to go off.
You get it as long as you want and are going reasonably well on it.
Keep up the good fight to get Herceptin as long as you can talk them into it! I believe that it would have helped me to have gotten it in the adjuvent setting.

Steph I have to agree...I feel if I was given Herceptin in the adjuvant setting, I wouldn't have had the recurrence!
Hugs
Sheila

I am sure your instincts are correct, both of you...Steph and Sheila. But it is helping you now, right? That is what matters NOW....

My doctor told me that there has been some research showing that when metastatic women are taken off Herceptin that the cancer becomes more aggressive than it was before. But I've never looked to confirm this research.