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Lolly · 12-09-2006, 07:06 PM

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

12-09-2006, 07:06 PM	#6
Lolly Senior Member Join Date: Aug 2001 Location: Oregon Posts: 1,756	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 __________________ Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation. Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.