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Old 05-15-2014, 10:58 AM   #2
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
Re: looking into CSF level of Ca15-3 to follow intrathecal leptomeningeal tx efficacy

Still at Genentech trying to see about Intrathecal Perjeta alternating with Herceptin for CNS involvement. The problem is that implanting an Ommaya reservoir appears to be more risky than I thought. If the surgeon does not perform 3-4 of these placements every two weeks, the risk of compromise of the implant due to contamination or bad placement is pretty high. The good news is that Nina's is still working well. She is still symptom free. We had MRI scan false positives for the past three visits (determination finally made that no growth of lesion and probably late term radiation necrosis) on this last visit.

I asked four labs about the samples and received no response from any. It sounds worthwhile. As CNS involvement becomes more prominent, things seem to be getting a push. Still only about 200-300 women per year are dying of CNS involvement, but the concern is that it will become more frequent if systemic Perjeta/TDM-1 clears the disease in non-CNS locations. I am pushing hard to get an answer for my wife and all others.

Paul
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