HER2 Support Group Forums - View Single Post - Stage IV

Kim in CA · 04-20-2007, 02:23 PM

Dear Steph,

I'm sorry to hear your Dad is still in ICU. Sure hope they can get him off the ventilator soon.

I have been wondering about your Herceptin break, so was very glad to read your post. I have been wanting to take a break myself, but I'm CHICKEN! I have been on Herceptin for over 5 years too with the only recurrence being the brain met in 2005.

We check my tumor markers(CA 15-3) every time I get Herceptin and have run the Her2 Serum test 3 different times now (which has always been in the normal range). Because my markers have always been in the high normal range (at least for the last couple of years) we have been hesitant to take a break.

My range over the last couple years seems to be in the mid to high twenties, with 31.3 of course being the cutoff. We only recently did a full body CT/PET scan because I had been having pain in my shoulder, but that came back clear. That was the first scan I had in over two years because I have been trying to decrease my exposure to radiation and felt that running the tumor markers and Her2 Serum would be better.

So, I just keep on with my Herceptin and am thankful to still be NED, but would love to take a break. I am due for a brain MRI and a MUGA , so will be scheduling them soon. Thanks for the reminder about colonoscopies (never had one of those, Oh Joy!)

Anyway, just glad you were able to take a little break and that it went well. Maybe I'll work up the nerve to try it too!

Love Kim

04-20-2007, 02:23 PM	#3
Kim in CA Senior Member Join Date: Sep 2001 Location: California's Gold Country Posts: 404	Dear Steph, I'm sorry to hear your Dad is still in ICU. Sure hope they can get him off the ventilator soon. I have been wondering about your Herceptin break, so was very glad to read your post. I have been wanting to take a break myself, but I'm CHICKEN! I have been on Herceptin for over 5 years too with the only recurrence being the brain met in 2005. We check my tumor markers(CA 15-3) every time I get Herceptin and have run the Her2 Serum test 3 different times now (which has always been in the normal range). Because my markers have always been in the high normal range (at least for the last couple of years) we have been hesitant to take a break. My range over the last couple years seems to be in the mid to high twenties, with 31.3 of course being the cutoff. We only recently did a full body CT/PET scan because I had been having pain in my shoulder, but that came back clear. That was the first scan I had in over two years because I have been trying to decrease my exposure to radiation and felt that running the tumor markers and Her2 Serum would be better. So, I just keep on with my Herceptin and am thankful to still be NED, but would love to take a break. I am due for a brain MRI and a MUGA , so will be scheduling them soon. Thanks for the reminder about colonoscopies (never had one of those, Oh Joy!) Anyway, just glad you were able to take a little break and that it went well. Maybe I'll work up the nerve to try it too! Love 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...