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Old 08-28-2008, 08:32 AM   #34
pattyz
Senior Member
 
Join Date: Mar 2006
Posts: 306
Marie,

The best part of the report was: no edema or mass effect. That's a good thing, as you've probably heard from the doc by now.

My current 6-(8?) brain mets include one on my posterior brain stem, too. Most others are in cerrebellum. They are from 5mm up. Including three that are over 1cm.

I concur with what Joe and Brenda have said.

Mainly, you want Ed to be treated by a person/facility with MUCH experience when it comes to choosing the type of focalized rads.

When I had my 2nd occurance, those numbered 14. One on brain stem then, too.

Two headframe type SRS procedures were done...... leaving 6 mets to deal with. Those 6 were treated with CyberKnife in two sessions two days apart. (no headframe)

My current, (3rd occurrance), of 6-8 have been treated with mixed results with Xeloda/Temodar. Tykerb was added last fall, but I had some small progression after that.

My onc created my dosing schedule for me, from information I brought him. We have tweaked both dosage and schedule over the past THREE YEARS. My last scans, end of last month were read: No change. That is what I like to hear

After the first four months on my X/T combo, scans came back at 50% shrinkage, twice! That was the best, ofcourse. Smaller shrinkages have been the more common. And slight progressions. And 'stable', no change.

WBR would not be in anyones thoughts at this point. Too soon since Ed's. If EVER again.

So, if Ed is not symptomatic at this point? You DO have some time to look around and see what is available in your own area.

That's my story and I'm sticking to it... 6 yrs with brain mets, refusing WBR all the way.

I know you will do all you can for Ed, finding and getting the best tx under all known circumstances.

xoxopatty
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