Stopping Herceptin after 3 years

[Lolly]

Hi Barb,

I think sometimes there are gremlins about
Anyway, I'll try to answer your earlier questions again:

Yes, I'm on Herceptin indefinitely now and Xeloda until scans in January will hopefully show me to be NED (No Evidence of Disease) again. Then I'll stay on Herceptin maintenance.
I only know one person who is Stage IV, NED, and been taken off Herceptin. She's still NED going into her 3rd month of no treatment, after lung mets. Her onc is in the same group as mine, but my onc has been leaving the decision up to me. So far I'm not anxious to test the waters. I'll have to be NED for awhile before I'd feel comfortable stopping H. The closest I came was after first recurrence, when I was in remission for 2 & 1/2 years and we were starting to discuss going off Herceptin, but then I recurred again. There is a school of thought that a Herceptin holiday in Stage IV disease is beneficial to the heart, and that if the rest period is long enough Herceptin could be restarted if needed and still be effective, as the cells sort of "forget" they've been exposed to an agent. My onc's group uses this stop and start protocol with chemo agents quite effectively, so I think that's the theory behind the Herceptin Holiday.
I would definitely ask your onc lots of questions, and ask for whatever data he's using to back this up.

Good luck to you!

<3 Lolly