Dear Barbara,
I'm very very sorry this had to happen to you. Life really sucks some times!!!
Here's what I would suggest to linda if this happened to her (God forbid):
1. get on the phone and make about 45 phone calls to various clinics, hospitals, etc (LA, Dana faber, MD Anderson, U of Philly, Cleveland BC centre, Cancer centres of America, Mount Sinani.......) and get some interest going in your case. I know that I had 4 hospitals in the states ALL have case conferences oon Linda's case within
24 HOURS AND WE LIVE IN CANADA. It's time to consider clinical trials:
http://www.clinicaltrials.gov/ct/gui/show/NCT00098605
http://www.clinicaltrials.gov/ct/gui/show/NCT00098605
All from our clinical trial page.
Probably most important is for you to snag an advocate and get them to go with you to your appointments and make your phone calls as you are probably too rattled to remeber a lot of the conversations.
The biggest issue: DON'T PANIC!! We've come a long way. BE POSITIVE, you will beat this on your terms, just research them and hunt them down, take no prisoners. This isn't a time to panic, it's time to do homework.
You are without symptoms so the urgency isn't there yet. Also, let's reach-ouyt to our brain mets friends on the Board to help with your course of action. This may not be the thing you can do alone so it is very important to get your advocate and move forward.
I'm sure that all of us will be praying for you as well.
Hang in,
Al and Linda
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