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

Kim in CA · 04-28-2011, 10:01 AM

Hi Kim and Everyone!

Well..... I saw my Oncologist yesterday and I have his blessing to STOP the herceptin. I'm still a little giddy, and overwhelmed at the same time.

The plan is to do Tumor markers and Her2 Serum in 6 weeks, and see how things are at that point. After almost 10 years of getting my Vitamin "H" every 3 weeks, I haven't quite processed how I feel about all of this. I unexpectedly burst into tears twice yesterday, just feeling overwhelmed by what seemed to be this monumental decision I've been pondering for so long.

I'm going to stay on the Femara for now. If I'm able to stay NED without the Herceptin, we will consider dropping the Femara next year, as it will have been 10 years for it too.

Kim (or anyone else) , can you tell me where I can find out more about the "Cell Search Circulating Tumor Cell" test you spoke of ? I would like to use all tests available to monitor things without having to do more scans.

I'll keep you all posted on how things go.

Kim in CA

04-28-2011, 10:01 AM	#31
Kim in CA Senior Member Join Date: Sep 2001 Location: California's Gold Country Posts: 404	Re: Sisters with Mets...should I stop Herceptin? Hi Kim and Everyone! Well..... I saw my Oncologist yesterday and I have his blessing to STOP the herceptin. I'm still a little giddy, and overwhelmed at the same time. The plan is to do Tumor markers and Her2 Serum in 6 weeks, and see how things are at that point. After almost 10 years of getting my Vitamin "H" every 3 weeks, I haven't quite processed how I feel about all of this. I unexpectedly burst into tears twice yesterday, just feeling overwhelmed by what seemed to be this monumental decision I've been pondering for so long. I'm going to stay on the Femara for now. If I'm able to stay NED without the Herceptin, we will consider dropping the Femara next year, as it will have been 10 years for it too. Kim (or anyone else) , can you tell me where I can find out more about the "Cell Search Circulating Tumor Cell" test you spoke of ? I would like to use all tests available to monitor things without having to do more scans. I'll keep you all posted on how things go. Kim in CA __________________ Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin. 5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation. 9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara . 11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED! 7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal! June -Dec 2004 UW Vaccine Trial. 7/2005 MRI single 11mm brain met 8/2005 Gamma Knife. Brain MRI @3 months NED! 2006-2011 brain/body still NED 8/04/11 Taking Herceptin break, will monitor with tumor markers. 6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month. 7/23/12 CA15-3 now 49.3 Her2 Serum 26.8 8/6/12 Back on Herceptin CA15-3 now 76 Her2 Serum now 49 11/7/12 Add weekly Taxotere for 4 cycles 2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta. November 2014 Continuing on Herceptin, Perjeta, and Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully! Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara Jan 2016 Begin Kadcyla March 2016 PET scan shows tumor now barely visible, still NED everywhere else. 2016/2017 continue Kadcyla November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...