Brain Mets - Advice and Encouragement Needed

[pattyz]

Since I have avoided WBR since 9/02, this is what I have to offer. I wish it was not so long:

Dec. 1999: Age 50, Dx'd Invasive Ductal & Inflammatory.

Jan. 2000: Mast., 6/26 pos. nodes. ER+PR-, Heu2+++ StageIIIb

July 2002: Dx'd mets, mediastinal node/s , (surgical biopsy), 'spot' on lung and pelvis.

Sept. 2002: Dx'd brain mets. (mininally symptomatic) Two lesions, 1.5cm, 6mm. SRS focalized tx successful. Refused WBR.

Nov. 2002: Navelbine/Herceptin 4rnds for systemic mets, scans show NED.

March 2003: Progression of brain mets. 14 new lesions visable throughout brain, including a 3mm in brainstem/pons. Asymptomatic. Continue to refuse WBR. "Watch and wait " approach, treating in small batches (choosing largest, most problematic first) with two more SRS, two CyberKnife procedures through May 2004 (that's over the course of just over a year!) NED in body.


March 2005: Progression brain mets - maybe 10 new lesions, asymptomatic. (otherwise NED) 'watch and wait' approach until...

Aug. 2005: Dizzy 24/7 in the course of just one day. Begin Temodar/Xeloda.

Sept. 2005: Following 2 rnds T/X, MRi shows response of nearly 50% shrinkage in many brain mets, including one 'new' in brainstem/pons area. Dizziness gone.

Nov. 2005: MRi duplicate of previous films- after 4rnds T/X, mets remain responsive w/ more shrinkage nearing 50%. Continue Temodar/Xeloda.


Dec. 2005: Onc confers w/rad onc re: past scans. Determine that some of the 'new' lesions are not new at all, but old treated spots just vaguely visable. Current count 6-8.

Jan. 2006: MRi shows all stable. Continue chemo combo.


May 2006: Mri reports "stable, minimal edema, no new lesions." This report details the eight remaining brain lesions, 6 clustered in cerrebellum with one on pons/brainstem, one frontal lobe. Most being 2-5mm. Just one of 8mm and one of 1.5cm. No symptoms. Continue on chemo break, no other tx's currently.


July 2007: After 9 mos. 'Stable': Progression. After a break, resume Temodar (w/the Xel) and add Tykerb for first time.


Wow. I am still doing the Temodar w/Xeloda for FOUR YEARS..and the Tykerb for almost two. Without ever doing WBR....

See onc tomorrow to see what latest report says on last wks. Mri.

You can do it, too, Courtney!!
xoxoxpattyz