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

Kim in CA · 04-21-2011, 09:39 AM

Hi Kim,

Glad to hear you are doing so well, and glad you brought this up.

I am going to be talking to my Onc. about stopping Herceptin at my next appt. I have been NED in my body since 2002. My brain tumor was in 2005, but I suspect that those "seeds" were already there from my massive liver involvement in 2001.

I had always thought that if I made it 5 years since any recurrences I would try going off the vitamin "H" , but my Onc sort of talked me out of it. He had gone to a symposium last year and mentioned me to a colleage, who was a specialist in BC (can't remember his name now) , and his oppinion was that I should stay on it forever.

I feel in my heart that I wan't to at least give stopping a try. I am also concerned about being on the Femara for so long (9 yrs.) My cholesterol is now elevated and I had to go on blood pressure meds 3 yrs ago. I have always had extremely low blood pressure so this is a concern for me.

I don't do scans anymore, just monitor things with tumor markers and occasionally Her2 serum test. This is because of the concern over so much radiation exposure. If I were to stop the Herceptin, I would be a little worried about not doing scans, so that might have to change.

So much to consider.......but I'm still going to pursue it.

Kim

04-21-2011, 09:39 AM	#20
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, Glad to hear you are doing so well, and glad you brought this up. I am going to be talking to my Onc. about stopping Herceptin at my next appt. I have been NED in my body since 2002. My brain tumor was in 2005, but I suspect that those "seeds" were already there from my massive liver involvement in 2001. I had always thought that if I made it 5 years since any recurrences I would try going off the vitamin "H" , but my Onc sort of talked me out of it. He had gone to a symposium last year and mentioned me to a colleage, who was a specialist in BC (can't remember his name now) , and his oppinion was that I should stay on it forever. I feel in my heart that I wan't to at least give stopping a try. I am also concerned about being on the Femara for so long (9 yrs.) My cholesterol is now elevated and I had to go on blood pressure meds 3 yrs ago. I have always had extremely low blood pressure so this is a concern for me. I don't do scans anymore, just monitor things with tumor markers and occasionally Her2 serum test. This is because of the concern over so much radiation exposure. If I were to stop the Herceptin, I would be a little worried about not doing scans, so that might have to change. So much to consider.......but I'm still going to pursue it. Kim __________________ 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...