[pattyz]

Hey Brenda,

Ok...

Spring 2005 I had a progression showing 8-10 new brain mets, but no symptoms and all were fairly small.

Mri's every 2 months, watching/waiting.

Number of lesions lowered from the 10 down to eight, as others seen earlier were remnants from earlier rads tx's.

Aug. 2005 - 'we' decided to start my Xeloda/Temodar based on the increase in size and the info I brought to my onc re: the combo of Xeloda/Temodar specific to bcbmets.

The very next day, I became dizzy 24/7! Good timing... And that dizziness seemed to lessen after only a weeks time on tx. And in fact it did. Dissapeared totally after first round.

MRi at 2 months (two rounds) showed: 50% shrinkage to most lesions.

MRi at 4 mos. (four rounds) showed: (again!) near 50% shrinkage.

My dosage/schedule of Xeloda/Temodar was 'designed' for me by my onc. To start:

Xeloda @2000mg tot. per day x 14 days.
Temodar @250mg per day x 7 days. (the first wk of Xeloda)

Repeat in two weeks. Giving me the Temodar just one week out of four. ('premed' of Zofran for barfing/nausea just for the Temodar).

Over the course of these past 3 yrs. we have tweeked the dosage and schedule a number of times. Sometimes dropping the Temodar for a few months. Dosage of Xeloda down to just 1000mg tot. a day.

However, I did have progressions and stable periods. So, perhaps the 20/20 visions says I should have stayed the original course...

It now appears that I have just 6 brain mets... but no reader actually specifies, damn it. Some say 6-8 and leave it at that.

With my last progression and 3/4 of the lesions being just over 1cm, including the pons/brainstem, we started a 'new' schedule.

Xeloda back @2000mg tot. day x 7 on/7 off.
Temodar back @250mg tot. day x 7 on/21 days off.

We added the Tykerb last fall... but I still had this latest progression. Yet, I take it, full dose, every night on top of the X/T.

Mri after first 'new' schedule showed: Stable, no change, no new. No edema nor mass effect. I'm ok with that, but sure would like a bit of shrinkage along with it!

Next Mri is Thurs. the 18th. See onc for results the following week. I can let you know what the report says then if you want...

The 16 brain mets I had treated with Linear accelerator/SRS w/headframe (10 lesions) and CyberKnife, no headframe YEA!(6 lesions), totally resolved and have not returned these last four years.

I'll be sure to watch for your updates... I use YOU as an example of yet another way to tx brain mets successfully!

wishing for the best outcome, and good people to see you through,
hugs,
patty

p.s.
I need to use a timer when I'm on my chemos. AS: 30mins b4 taking the Temodar I take Zofran. Then, the Temodar on empty stomach. 60mins later, eat fruit cup as: Xeloda WITH food.... oh boy.....