Brain mets update...

[Emmay]

When I last posted in early October '07, my sister had just switched from the Temodar/Sorafenib rx (which had worked well for about 8 months, but was discontinued because of uncontrolled weight loss due to loss of appetite & diarrhea- and her MRI showed slight enhancement at end of Sept) to Tykerb/Xeloda.

She has tolerated Tykerb/Xeloda very well since October - but her last two MRIs (1/31 & 3/14) have shown slight to increasing enhancement in some areas already treated by Cyberknife radiosurgery (my sister already had WBR in Nov.'04). We looked at the MRI and felt very discouraged until her neuro-oncologist said that they'd seen a similar response in a couple of other bc brain mets patients who had had WBR and were now on Tykerb-- when biopsies were done they found necrosis - not tumor growth.

They suspect that Tykerb may be boosting the effects of radiation, causing swelling. My sister's next MRI is on 4/14; until then, she is off Tykerb, still taking Xeloda, and is taking 2mg/day of Decadron to control the swelling (her balance had been off and was getting headaches). They are waiting to see if stopping Tykerb for a few weeks results in a reduction of swelling (will be hard to discern for sure because she needs Decadron for now) without signs of growing disease.

[Christine]

I have had brain mets since 1999. Originally 3, treated with Gamma Knife then WBR and had 2 pop up since, 2002 and 2006. Most of the mets grew slightly before they died off. Rad Onc told me the same thing.

Hugs
Christine

[Emmay]

Thanks so much, Christine. You are a beacon of hope and encouragement to all who visit this site, as is your dear husband Joe.