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Kim in CA · 02-02-2018, 10:44 PM

Hi Colleen,

Just my 2 cents here, but I wish that I had never stopped my good old Vitamin H! I too was in Long term remission, and really thought perhaps I was cured. Inspired by our own Steph N. and Andi B. (and others whom I can't remember now) I decided to take a break from Herceptin.

Well, the beast came back again big time. Even with Herceptin, Taxotere, and Perjeta, and now Kadcyla, I've not been able to get to a point where my tumor markers are steadily in the normal range, like they were prior to stopping the Herceptin. I am now on the Kadcyla indefinitely, and though I've tolerated fairly well, it's certainly not as easy as the Herceptin was!

Who knows, I may have eventually recurred on just the Herceptin, but there will always be that ? in my mind.

This just goes to show you how incredibly different we all are in our response to these drugs. Like my old oncologist used to say, "we are in uncharted territory here" Sigh.....so true!

02-02-2018, 10:44 PM	#6
Kim in CA Senior Member Join Date: Sep 2001 Location: California's Gold Country Posts: 404	Re: When to consider ending treatment? Hi Colleen, Just my 2 cents here, but I wish that I had never stopped my good old Vitamin H! I too was in Long term remission, and really thought perhaps I was cured. Inspired by our own Steph N. and Andi B. (and others whom I can't remember now) I decided to take a break from Herceptin. Well, the beast came back again big time. Even with Herceptin, Taxotere, and Perjeta, and now Kadcyla, I've not been able to get to a point where my tumor markers are steadily in the normal range, like they were prior to stopping the Herceptin. I am now on the Kadcyla indefinitely, and though I've tolerated fairly well, it's certainly not as easy as the Herceptin was! Who knows, I may have eventually recurred on just the Herceptin, but there will always be that ? in my mind. This just goes to show you how incredibly different we all are in our response to these drugs. Like my old oncologist used to say, "we are in uncharted territory here" Sigh.....so true! __________________ 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...