HER2 Support Group Forums - View Single Post - Sisters with Mets...should I stop Herceptin?

mamacze · 04-11-2013, 04:49 PM

Hi Laura4252,
I am so happy to hear you are doing well on TDM1. My oncologist says that TDM1 will likely be my next line of treatment when my mets start to act up.
I continue on Herceptin infusions every 3 weeks. That is it. Except for my one short 2011 holiday from Herceptin, I have been getting Herceptin infusions since May 26, 2004. The one small tumor in my lungs remains - and is stable. It doesn't get bigger or shrink thus far. I had a biopsy done on that tumor. It has a PIK mutation and there is an off label drug that has shown some promise against that type of mutation if I need it. And while the Herceptin isn't intended to address a PIK mutation, the tumor is behaving. So we figure, if it ain't broke....
I will keep you posted.
And YOU, hanging in there and doing so well - are you experiencing any side effects from TDM 1? How are you and your family handling all of this?
XO Kim (from CT)

04-11-2013, 04:49 PM	#59
mamacze Senior Member Join Date: Sep 2005 Location: Madison, Connecticut Posts: 639	Re: Sisters with Mets...should I stop Herceptin? Hi Laura4252, I am so happy to hear you are doing well on TDM1. My oncologist says that TDM1 will likely be my next line of treatment when my mets start to act up. I continue on Herceptin infusions every 3 weeks. That is it. Except for my one short 2011 holiday from Herceptin, I have been getting Herceptin infusions since May 26, 2004. The one small tumor in my lungs remains - and is stable. It doesn't get bigger or shrink thus far. I had a biopsy done on that tumor. It has a PIK mutation and there is an off label drug that has shown some promise against that type of mutation if I need it. And while the Herceptin isn't intended to address a PIK mutation, the tumor is behaving. So we figure, if it ain't broke.... I will keep you posted. And YOU, hanging in there and doing so well - are you experiencing any side effects from TDM 1? How are you and your family handling all of this? XO Kim (from CT) __________________ 2001 - Stage 0, lumpectomy, radiation, tamoxifen 2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only. 2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle 2011 - Still Herceptin only and NED 2011, June - STOPPED Herceptin and kicked up my heels! 2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable. 2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only Received U of W vaccine clinical "booster" Vaccine 2022 On Herceptin and NED continues - WOOT WOOT!