PattyZ,Steph and Mickey,Lisa I Need your Help

[kristen]

Ladies, I have read all your posts on this page, I need your help to see if what Patty is on is my friend Wendy's best option, her onc's told her this past Friday that she is out. This will be her second time she was told she only has 6 months to live. Her first dx was 6 mths ago stage IV with mets to liver and brain, her liver would look shot on film but function test says it's at 99.9% capacity. Good news! Wendy gets scanned every 3 months, last one, everything was stable with no new growths. This last Friday she has a new tumor in her brain, can it be this size? 23cm? It has wrapped itself around the brain with tentacles and you know it's inoperable. The radiation she recieved last time was the max, they say. I have some questions and I know Patty is out of town and was wondering if you could shed some light on what she was saying? I really would like to give her some options she is only 35 with a toddler, please help me, help her. Patty said this may only be temporary, but the results were good only after 2 treatments. What would cause it not to keep the mets in check? Is the Temodar only good for small mets, not one large one? What does the leaky bbb mean, is that good or bad? I am thinking it's good it lets in chemo? If it makes her sick with the Xeloda, there is an option of cutting the dose down? The regemine is Temodor for 7 days plus Xeloda, 2000mg for her bwt. cut in 1/2 is that once a week then again the other half the following week? or every day for 14 days? Then one week off? With a tumor this size she is on decadron, she isn't sleeping well, told her about Ativan, Mickey didn't take it but they were small, should she continue to take it? Is there a chance to cut the dose down? Patty also wrote and this gives me hope, treatment stops when there is permenate disabling brain damage, she feels great and has no symptoms, she is just now feeling like a plastic glove is starting to squeeze around her head. Or Patty said severe progression of other mets indicitive of something, I can't read my writing, but she doesn't have that. That brain mets progression alone there is not a lot of good information that it doesn't happens very often. With a tumor this size is a MRS scan applicable? Could some of it not be active? She has 2 oncs. The onc who delivered the news is very impersonal and looks at charts where as the other one knows her by name and her daughters name and tells her options. This one didn't. Just told her to come back and to continue to get Herceptin every week. I am really scared for her, but still have hope. Have any of you known anyone who has a tumor this large and beat it? Would she have a chance with Patty's combo? Is there ANY thing else you can advise me on? I feel time is of the essence with the size of this monster, seizures, etc. Thank you for endurng this long post. I just know you all will pull together and help me, help her. Your the best! Thanks for getting back so soon, I know you will. God Bless you all. LOL