HER2 Support Group Forums - View Single Post - Any Stage IV deciding to go off Herceptin?

StephN · 10-06-2008, 09:15 PM

Dear Kim -
Great to learn that you are still doing so well and here "taking advice." Way to go, Lady!

I still get my Herceptin each three weeks. I did take a short 3-month "Herceptin Holiday" beginning of 2007, but huge stresses came along that I had no control over and I did not like feeling that my body was to at its best as well as unprotected from a cancer flare-up. So cut it short at the 3 months.

Used the Bayer (now Siemens) HER2 serum test three times and had nearly the same result each time.
I asked to have it again recently and my onc replied that she did not feel it was necessary as my other markers are taken regularly and have not moved. She would order it if there was suspicion of progression, since I have a solid baseline.

Scans to check body are PET/CT every 6 months, only this next time I am just having a plain CT (my idea).

My MUGA did drop some this last time, but we feel it happened due to other causes than Herceptin. It will be checked at 6 months instead of a year.

10-06-2008, 09:15 PM	#16
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Dear Kim - Great to learn that you are still doing so well and here "taking advice." Way to go, Lady! I still get my Herceptin each three weeks. I did take a short 3-month "Herceptin Holiday" beginning of 2007, but huge stresses came along that I had no control over and I did not like feeling that my body was to at its best as well as unprotected from a cancer flare-up. So cut it short at the 3 months. Used the Bayer (now Siemens) HER2 serum test three times and had nearly the same result each time. I asked to have it again recently and my onc replied that she did not feel it was necessary as my other markers are taken regularly and have not moved. She would order it if there was suspicion of progression, since I have a solid baseline. Scans to check body are PET/CT every 6 months, only this next time I am just having a plain CT (my idea). My MUGA did drop some this last time, but we feel it happened due to other causes than Herceptin. It will be checked at 6 months instead of a year. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.