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Old 05-19-2014, 10:26 AM   #2
Kim in CA
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Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
Re: Herceptin + Perjeta - what side effects have you encountered?

Hi qpdawlsmom,
I too was on a taxane with Herceptin and Perjeta, and am now just getting the Herceptin and Perjeta every 3 weeks. I lost my sense of taste while on the Taxotere, and had, and still battle with, neuropathy in my hands and feet. My sense of taste gradually returned after stopping the Taxotere.

Currently the only side effect I can attribute to the Perjeta, is intermittant bouts of diarrhea. The bad thing is I'm never really sure when it's going to strike, so get nervous about ever being too far from a toilet!

When my doctor first prescribed the Perjeta, my insurance denied it because it wasn't my first line treatment for metastatic disease. I had to go through Genentech's patient access program to get the drug. Shortly after that, I switched health plans, to Kaiser Permanente, and they had no problem at all giving me the Perjeta.

I just had an MRI of my brain, which was clear....yay! but declined the PET scan because I am concerned about the cumulative level of radiation I've had over the years of fighting this disease. I prefer to use watch my tumor markers and scan if they show an upward trend.

Hope this helps,
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...
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