HER2 Support Group Forums - View Single Post - After Whole Brain Radiation -now what?

StephN · 02-01-2009, 01:12 PM

Hi Lani -
Well, you have hit "it" on the head. We members here are constantly butting our heads on the brick wall of ignorance, which budges what seems to be only a millimeter at a time even with all of us pushing. Some of occasionally are lucky enough to have come upon an enlightened care team or at least an onc, but recall how many posts we have had from women needing to change oncs because of such ridiculaous statements or treatment decisions.

Our presence at all these meetings so far is the best we could do to put "a new face" on Her2 primary and metastatic breast cancer. We stand there as proud pillors of our group. If you were hanging around our booth and heard some of the conversations we have with the convention attendees, you would see that they get a real wake up call from seeing us there in the flesh.

I don't know when the "official" stats that are "out there" will change, but hopefully soon. We could not get even Genentech to do a followup on long term survivors who are stage IV and on Herceptin! I remember getting in Debu Tripathy's face about that at ASCO a few years back.

02-01-2009, 01:12 PM	#5
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Hi Lani - Well, you have hit "it" on the head. We members here are constantly butting our heads on the brick wall of ignorance, which budges what seems to be only a millimeter at a time even with all of us pushing. Some of occasionally are lucky enough to have come upon an enlightened care team or at least an onc, but recall how many posts we have had from women needing to change oncs because of such ridiculaous statements or treatment decisions. Our presence at all these meetings so far is the best we could do to put "a new face" on Her2 primary and metastatic breast cancer. We stand there as proud pillors of our group. If you were hanging around our booth and heard some of the conversations we have with the convention attendees, you would see that they get a real wake up call from seeing us there in the flesh. I don't know when the "official" stats that are "out there" will change, but hopefully soon. We could not get even Genentech to do a followup on long term survivors who are stage IV and on Herceptin! I remember getting in Debu Tripathy's face about that at ASCO a few years back. __________________ "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.