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Old 07-31-2007, 08:25 AM   #16
pattyz
Senior Member
 
Join Date: Mar 2006
Posts: 306
Nicola,

This may be too late to be of any use to you... however:

My first dx with brain mets was in Sept of 2002. I had a total of 16 brain mets treated with five focalized radiation treatments over the course of 20 mos. I lived with 14 lesions at once, treating in small batches the largest/most likely problematic. My symptoms were minimal. I refused WBR througout.

Since April of 2005, I've lived with 8 additional brain mets. These have showed a good response to Xeloda/Temodar, twice shrinking nearly 50%, stable with no new lesions now for two yrs. (knockwood)
The largest mets have been 1.5cm, down to 3mm in size. Two small mets have shown up on my brainstem/pons. Others have been throughout brain, front to back, sides to top.

My body mets have been NED since treating with Navelbine/Herceptin late in 2002.

WBR is the first automatic response as treatment. But do your research. IF effective, it is not a 'cure'. Many gals who do WBR have more brain mets appear anyway. Even tho' they will tell you: "there are most likely more mets seeded that do not appear in the MRi." yes, that was true in my case, yet I was able to treat these WITHOUT undergoing WBR.

From April until Aug. of 2005 I waited to treat these current 8 brain mets, doing MRis every two months to keep an eye on them. In Aug then, I became dizzy 24/7 and immediately began my chemo combo. More focalized rads were then not an option as they are cummlative and I had reached the said max amount.

I had to fight to get the treatment I chose. Going in with good information, keeping calm and having my partner there to show his support of what I wanted to do, were really key, I believe.
and that is my experience only....... hope some of it is helpful to you,
best wishes,
pattyz
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