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Brain Mets - Advice and Encouragement Needed
Are there any brain mets ladies out there to offer advice and encouragement? I am feeling a bit scared and overwhelmed and wondering if I should be doing more, getting second opinions, etc.
I was NED until a December scan showed 6 small spots (largest is 6mm) in my brain. Body is still NED. My onc put me on Tykerb (1250 mg/daily) at the beginning of January. My most recent (2/4/09) Brain MRI showed no new mets. Four of the mets were the same and two of them have grown by about 5%.
The new plan is to add Temodar and wait another 6 weeks to scan again. Then we will decide if either Gamma Knife or WBR is needed.
Has anyone out there been successfully treated for brain mets with drugs alone? Should I seek a second opinion? Are there any long-term brain mets survivors here? From the statistics I find online they speak of survivorship in terms of months. Its all pretty scary. I just need to hear from some of you who have traveled this road. What should I do?
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4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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