Sorry for the length of this, I tried to be 'concise', but no luck!
Sept. 2002: dx'd brain mets. Opted for focalized tx, SRS Linear Accelerator - 'screwed on' headframe the worst of it. All day with frame on for about an hr on table. Totally successful. 1.5cm and 6mm lesions.
Scanned about every two months...
March '03 dx'd with 14 new brain mets, no symptoms, all small: 8mm down to 3mm. Fought tooth and nail, but had the support of my partner to keep refusing WBR when confronted by dire warning and angry rad onc.
? April '03: 4 brain mets, including 3mm on brainstem/pons treated with 2nd SRS. Successful, but needed a weeks worth of low dose decadron.
?July '03: 4 more brain mets done successfully with 3rd SRS procedure.
Dec. '03: 'Final' six mets treated in two CyberKnife procedures two days apart. These were all in my cerrebellum. I lost hair in tx'd areas, but it fully grew back in 'normal' time. The CyberKnife was also successful and I much preferred it. No screwed on headframe, but a very tight form fitted face mask.
I did 'need' a low dose of dec for a week after each procedure. None treated have recurred or become necrotic.
Back then, I didn't have the information to ASK for any added drug concurrent with tx's. So, no, I didn't have X or T along with rads.
May '05: MRi showed new 8 lesions. Nearly 1-1/2 yrs after last radiation.
My onc created a schedule of dosing just for me with the Xeloda/Temodar. Shortly afterwards, I found the small study done on bc brain mets using these two drugs with some small successes. My schedule: 2000mg Xeloda per day tot. x 14das. Along with 250mg Temodar per day x 7 days. two weeks off.
I have had no side effects other than fatigue and complicated constipation. Have missed my Zofran ONCE before taking the Temodar... never to be repeated!!! vomiting in wee hrs not fun at all......
And now, the reason for my current tx with my latest brain mets: the focalized rads are
cumulative. All but two of these 8 are in my cerrebellum (one again on brainstem, one frontal lobe)... any more focalized rads to the area carry high risk of permanent damage.
yet......... I was once again advised to do WBR. sigh..... so you see, it has been one fight after another, yet my medical onc is totally 'on board' with my decisions. He likes being able to use me as encouragement to others
)
Right before my first brain mets dx, I was dx'd with mediastinal nodal mets, spots on lung and pelvis. Following my initial rads tx for the brain, I became NED in body after a short time on Navelbine/Herceptin. Knock wood, still NED body.
If there is anything else I may be able to help you with, ofcourse! you can email me...
with hugs,
patty