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I guess I already shared my brain mets history with you, so for now just have a few comments on your current questions.
From my understanding the Tykerb can help keep brain mets from recurring, but not do much in the way of 'shrinking' current lesions.
I have had remarkable good results with shrinkage and stable, no new brain mets for the past 20 months using Xeloda/Temodar.
I have waited for treatment for a full yr when I had my second set of 14 brain mets show up... This was from treating the largest most problematic lesions first, the rest in stages.
With my current 8 brain mets, I waited four or five months to begin treatment at all.
And yes, they were right in my case about 'more being already seeded'. Those 14 showed up six months after my first focalized rads to orginal two mets.
It has also been my observation (and research) that WBR does not have the kind of success rate, IF effective in the first place, that they would like us to believe. You are right that recurrances happen time and again AFTER undergoing WBR.
It is all scary decisons. I was nervous about all of mine, but my gut told me to trust the knowledge I'd gained from the deep research I'd done. Yet, I put all my affairs in order, just in case...
Lucky for me that my mediastinal mets, plus spots, responded so well to Navelbine/ Herceptin back in late 2002. Have remained NED in bod since then.
The brain mets have been throughout my brain, including brainstem/pons. Many in my cerrebellum, too. But, the largest was just 1.5cm and that was at first dx.
I have never regretted refusing WBR inspite of the recurrances and additional treatments.
You need to finally just go with the plan that you feel safest with. It is all a crap shoot afterall, no matter what treatments or stages we go through. I hate to be bullied, and felt that the advice I received was of that ilk. I may have felt different if someone came across with compassion and an understanding of my desire for good QOL in the 'long term'.
very best wishes to you...and a big hug,
pattyz
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