HER2 Support Group Forums - View Single Post - for those whose doctors, insurance cos. or govt.heath services want to stop herceptin

StephN · 11-28-2007, 12:21 PM

Interesting post, Lani.

In my case it took about 2.5 years after I achieved complete remission from my extensive liver mets for the tumors to show up in my head. My med onc told me he thought they had been "seeded" when my cancer was very active with those liver mets. Just took longer to show themselves, as I had NO symptoms from them when I had my annual brain MRI.

No way would he have recommended I stop Herceptin, even though it does not normally pass through the blood/brain barrier. By keeping the mets in body/organs at bay, we are protecting our brains just the same. (He did feel that with as much Taxol I took, my BBB could have become "leaky" and let some of the Herceptin through thereby killing off any more little seedlings.)

I certainly hope with the more recent information on the spread of mets to the brain, the docs would not be so cavalier about stopping a drug like Herceptin for NED patients, even though it is expensive.

11-28-2007, 12:21 PM	#3
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	No thoughtfullness with that guy! Interesting post, Lani. In my case it took about 2.5 years after I achieved complete remission from my extensive liver mets for the tumors to show up in my head. My med onc told me he thought they had been "seeded" when my cancer was very active with those liver mets. Just took longer to show themselves, as I had NO symptoms from them when I had my annual brain MRI. No way would he have recommended I stop Herceptin, even though it does not normally pass through the blood/brain barrier. By keeping the mets in body/organs at bay, we are protecting our brains just the same. (He did feel that with as much Taxol I took, my BBB could have become "leaky" and let some of the Herceptin through thereby killing off any more little seedlings.) I certainly hope with the more recent information on the spread of mets to the brain, the docs would not be so cavalier about stopping a drug like Herceptin for NED patients, even though it is expensive. __________________ "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.