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Old 05-03-2017, 11:12 AM   #1
meo
Senior Member
 
Join Date: Aug 2011
Posts: 85
Re: How Her2+ BC patients develop brain metastases

To my sisters that have had brain mets....how was it first detected?
Scan, or did you have symptoms?
__________________
dx 7/2011
open incisional biopsy w/o clear margins
IDC IIa Her2+++ ER-PR- Ki-67 72%
changed doctors
9/2011 Rt breast mast w/expander
Sentinel node neg
scans clear
10/2011 port in
10/2011 began TCH
2/2012 last TC. Herceptin through 10/2012
severe osteopenia
7/2012 prophylatic left mast, node clear
11/2012 anemic
12/2012 began MDAnderson clinical trial
1/2013 implants in, port out!
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Old 05-08-2017, 12:15 PM   #2
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
Re: How Her2+ BC patients develop brain metastases

Seven years after finding Brain mets on a MRI scan (November 2 2009) and five years after new brain mets and 20 to 25 spine mets (December 15, 2011) my wife is still alive. Doctors are now finding they have to do MRI scans of the brain and spine for HER+ patients for six to ten years. The problem has been that most doctors don't know what to do. I have helped a significant number of patients get Intrathecal Herceptin (now paired with a chemotherapy also IT) with pretty decent results. The problem is that a clinical trial takes took long to recruit a patient, so they are rarely healthy enough to participate. I challenge doctors with how many patients do they have that have gone into remission. Then I say that the vast majority of the patients that have tried the MD Anderson protocol have gone into remission. There is hope for patients, but you have to ask your doctor to look at the treatments. That can be hard for a medical professional's ego. If you run into CNS mets from HER+ ask about this treatment. If your doctor says it does not work, ask for the evidence in clinical trials or other documented cases.
There is the ability to raise the 20% to 90% or higher, but it takes patients asking the question.
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