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

mamacze · 04-26-2011, 06:47 PM

Hi Girls!
I love reading your opinions and ideas...and I am sorry for being absent for a while...I have this trouble of getting distracted with kids, holidays, sunshine...
StephN! How wonderful to see you and hear that you are still doing well! Is the wine store still doing well? And Kim! I feel like this is old home week and I am getting caught up with life long friends. I am just so darn happy that you both are doing well.
Yes, I did sleuth this out and here is what I found out. I spoke at length with Dr. Dang at Sloan. She has several her2 patients who are being maintained with mets. Her opinion is that yes, we can take a holiday from Herceptin. Many of her patients have stopped their Herceptin but they have all reoccurred at some point. Some as soon as 4 months and others have not reoccurred for 2 years. When she sees a renewal of cancer activity, she restarts the Herceptin and they continue to respond.
I am also worried about the radiation from all those scans. I have decided to stop the scans and go instead to tumor markers; traditional and Cell Search Circulating Tumor Cells. If one or both markers rise; then I will get a scan. Finally, I have decided to take the summer off from Herceptin from mid June through Mid September.
OK, enough yakety yak from me. While thanking God for many years of NED we will also have to continue to compare notes! I love hearing from you!
Love Kim from CT

04-26-2011, 06:47 PM	#25
mamacze Senior Member Join Date: Sep 2005 Location: Madison, Connecticut Posts: 638	Re: Sisters with Mets...should I stop Herceptin? Hi Girls! I love reading your opinions and ideas...and I am sorry for being absent for a while...I have this trouble of getting distracted with kids, holidays, sunshine... StephN! How wonderful to see you and hear that you are still doing well! Is the wine store still doing well? And Kim! I feel like this is old home week and I am getting caught up with life long friends. I am just so darn happy that you both are doing well. Yes, I did sleuth this out and here is what I found out. I spoke at length with Dr. Dang at Sloan. She has several her2 patients who are being maintained with mets. Her opinion is that yes, we can take a holiday from Herceptin. Many of her patients have stopped their Herceptin but they have all reoccurred at some point. Some as soon as 4 months and others have not reoccurred for 2 years. When she sees a renewal of cancer activity, she restarts the Herceptin and they continue to respond. I am also worried about the radiation from all those scans. I have decided to stop the scans and go instead to tumor markers; traditional and Cell Search Circulating Tumor Cells. If one or both markers rise; then I will get a scan. Finally, I have decided to take the summer off from Herceptin from mid June through Mid September. OK, enough yakety yak from me. While thanking God for many years of NED we will also have to continue to compare notes! I love hearing from you! Love 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!