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06-03-2004, 01:40 AM

Ron,

This has been my personal experience. I have been able to get co-operation from docs who have LISTENED to me.

I have had as many as 15 visiable brain mets. I have been nearly asymptomatic. Since I have refused WBR since first dx in Sept. 02, I opted to have the four largest treated. One on brain stem. Then watch the remaining tumors with 2 month MRI's.

I had an additional four treated six months later still leaving the smaller ones.

Finally got a referral to our new CyberKnife Center where I had the remaining (turned out to be six) treated with CK in two treatments a few days apart.

Was originally dx'd with two met tumors. A 1.5cm and 6mm. Was told then, as you have been, that not doing WBR would probably show up more eventually. It took me 6 mos.

So, I have had three SRS procedures (like GK) and two CyberKnife treatments treating a total of 16 brain mets. With latest MRI showing no new ones.

Again, this has been my experience, with my personal health history. I have been lucky not to have 'more than can be counted' appear to this point.

I tend to get upset when friends of mine who have had the WBR end up with more brain mets anyway. Then desperate for treatment. Not to mention the side effects.

Best of luck to you both with your treatment decisions and in finding compassionate care givers.
pattyz

06-03-2004, 01:40 AM	#2
pattyz Guest Posts: n/a	Ron, This has been my personal experience. I have been able to get co-operation from docs who have LISTENED to me. I have had as many as 15 visiable brain mets. I have been nearly asymptomatic. Since I have refused WBR since first dx in Sept. 02, I opted to have the four largest treated. One on brain stem. Then watch the remaining tumors with 2 month MRI's. I had an additional four treated six months later still leaving the smaller ones. Finally got a referral to our new CyberKnife Center where I had the remaining (turned out to be six) treated with CK in two treatments a few days apart. Was originally dx'd with two met tumors. A 1.5cm and 6mm. Was told then, as you have been, that not doing WBR would probably show up more eventually. It took me 6 mos. So, I have had three SRS procedures (like GK) and two CyberKnife treatments treating a total of 16 brain mets. With latest MRI showing no new ones. Again, this has been my experience, with my personal health history. I have been lucky not to have 'more than can be counted' appear to this point. I tend to get upset when friends of mine who have had the WBR end up with more brain mets anyway. Then desperate for treatment. Not to mention the side effects. Best of luck to you both with your treatment decisions and in finding compassionate care givers. pattyz