[Rolepaul]

Sorry to be off the board so long. There were other matters that were pressing. My wife had leptomeningeal Brain mets. She was treated with IT Herceptin and Toptoecan. She is in remission.
The 40% mets to the brain really meant that 40% of the women that had mets were found to have mets in the brain/spine at autopsy or based on MRI scans. Brain/Spine mets are typically more slow growing than other organs, but can be devastating when they occur. I still recommend, as I did in November 2008, that if mets are found that a brain MRI scan also occur. If you do the math, the number of patients that are likely to have death occur from brain mets is 850 to 2000 patients per year. There are many proposed therapies, but I think the success of 80 to 100 mg of IT Herceptin (with or without Toptoecan) has shown real promise in the treatment of patients. Xeloda/Tykerb has shown benefits, as has OMT 380 for those patients who do not respond to surgery and radiation. I have helped many (over 35) women get this treatment. It is hard for me to recommend something different at this point, but I hope to do so in the future.
Nina started IT Herceptin at half dose on Jan 2012, and full dose on Feb 8 2012. She is still alive and doing well. The percentage of patients with both deep brain and lepto mets who have responded well to this treatment is over 80%. Start with a request for Compassionate care as soon as you find the CNS mets, and fight hard. The ability to get the meds and to get US Insurance to pay for it is 100% at this point. Getting compassionate care from your cancer center is getting easier as well. Let me know if you need help. I am not a doctor or medical practitioner, so this is a recommendation from someone with a lot of experience in helping patients with this issue.