Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases)

[embur102]

Hello everyone!
I am late to this party,
Just found this thread today, 9-6-14.

I was initially diagnosed April, 2012...had R mastectomy May, 2012....A/C chemo July, 2012, followed by Taxol/Herceptin, then Herceptin only until Sept 2013.

Discovered one 2 cm brain lesion in June 2014, following a seizure. No other symptoms. Did one Gamma knife treatment at Cleveland Clinic....follow up MRI showed 50% reduction of lesion, no necrosis, no new lesions. Finished steroids in late July, currently considered "stable" , no symptoms, and scans show no evidence of disease elsewhere in body.

My question is: should I be doing more treatment? (ie IT Herceptin, etc.)
All of my docs are saying "It's all good, could be isolated incident, scans every two months, treat as needed."

I felt ok with that, but now, after reading thru this thread, I am questioning our decision. My quality of life is pretty much normal...I am working, exercising, participating in life as usual, feeling healthy and fine.

Really disliking HER2+ and all of the "grey areas" !!!

Very appreciative of all of the love and support on this board!!! Thankyou!!