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

[marvass]

Carol still doing fine. She started to walk again this summer. She has been off IT herceptin for last 16 months now. Last MRI and CT scan done in May showed she is still NED and stroke clearing more and more. Quality of life getting better day by day. Will scan brain again next week. She is only taking 6mg/kilo IV herceptin and nothing else. Been taking this only treatment for past 16 months now. She has lost 35 kilos in 16 months. Now standing at 77 kg.

[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!!