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Kim in CA · 08-22-2015, 02:34 PM

Hi Katherine,

I've been on Herceptin and Perjeta alone for over 2 years now. Prior to that, I had been maintaining on Herceptin and Femara for many, many years. I was doing so well in fact, we thought maybe I was cured, and tried going off the Herceptin. My liver mets came back big time within a year. We started me back on Herceptin, but things were not improving fast enough, so added Taxotere, and Perjeta. As you can see by my signature, the Taxotere and Herceptin had gotten me to NED once before, so It seemed like the best choice. However, the Taxotere side effects were once again pretty bad, so we stopped, and I've been on just the H&P and Femara ever since.

My tumor markers have been slightly elevated in recent months, but I don't have any symptoms, so we just keep on this path, until something changes.

I asked my doctor a few months ago about going off of the aromatase inhibitor (Femara) that I've been on since 2002, because I don't like how it's ageing me, but she said "I'm afraid to rock the boat". So you see, as Amy said, we really are guinea pigs, at this stage.

I find the Herceptin and Perjeta are quite easy to tolerate, after your body has time to adjust. In the beginning the Perjeta caused diarrhea that was very unpredictable, so I never ventured far from the potty!

I still have to watch what I eat, but all in all, quite do-able.

08-22-2015, 02:34 PM	#5
Kim in CA Senior Member Join Date: Sep 2001 Location: California's Gold Country Posts: 404	Re: lung mets, CT scan, and going off chemo Hi Katherine, I've been on Herceptin and Perjeta alone for over 2 years now. Prior to that, I had been maintaining on Herceptin and Femara for many, many years. I was doing so well in fact, we thought maybe I was cured, and tried going off the Herceptin. My liver mets came back big time within a year. We started me back on Herceptin, but things were not improving fast enough, so added Taxotere, and Perjeta. As you can see by my signature, the Taxotere and Herceptin had gotten me to NED once before, so It seemed like the best choice. However, the Taxotere side effects were once again pretty bad, so we stopped, and I've been on just the H&P and Femara ever since. My tumor markers have been slightly elevated in recent months, but I don't have any symptoms, so we just keep on this path, until something changes. I asked my doctor a few months ago about going off of the aromatase inhibitor (Femara) that I've been on since 2002, because I don't like how it's ageing me, but she said "I'm afraid to rock the boat". So you see, as Amy said, we really are guinea pigs, at this stage. I find the Herceptin and Perjeta are quite easy to tolerate, after your body has time to adjust. In the beginning the Perjeta caused diarrhea that was very unpredictable, so I never ventured far from the potty! I still have to watch what I eat, but all in all, quite do-able. __________________ 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...