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rentrac · 10-08-2008, 08:14 PM

Dear Joan,
Part of me feels like I'm reading my own very recent history! I just had a craniotomy on my right cerebellum on 8/08/08 and am just now finishing the AWFUL Decadron. I had failed 2 trials of GammaKnife that starrted 4/07 on the cerebellum and L temporal lobe. My team advised Whole Brain, but I went to my training as an engineer - why a universal fix at first? I have been taking Tykerb/Xeloda for over a year and feel like it's the reason I've had only 2 brain mets (cerebellum was 2.9 cm when found), and my R lung apex lesions have disappeared.) I do tend to walk like I'm drunk and wish I'd had the enjoyment of a drink to get that way, but I'm getting more like myself with each decrease of the Decadron, according to family. I did a lot of reading and thnking before I made my decision. In the end, I went with my gut feelings, and feel comfortable with the result. Getting out of the hospital early, and my neurosurgeon (and staff) reports about how well I'm doing have helped alot as well. I'll be thinking of you and am always available if you ever want to talk it out. What ever you decide, trust yourself... we don't get to make too many decisions in this particular game!
Best of luck and love,
Rentrac

10-08-2008, 08:14 PM	#19
rentrac Senior Member Join Date: May 2007 Location: Eastern NC Posts: 65	Dear Joan, Part of me feels like I'm reading my own very recent history! I just had a craniotomy on my right cerebellum on 8/08/08 and am just now finishing the AWFUL Decadron. I had failed 2 trials of GammaKnife that starrted 4/07 on the cerebellum and L temporal lobe. My team advised Whole Brain, but I went to my training as an engineer - why a universal fix at first? I have been taking Tykerb/Xeloda for over a year and feel like it's the reason I've had only 2 brain mets (cerebellum was 2.9 cm when found), and my R lung apex lesions have disappeared.) I do tend to walk like I'm drunk and wish I'd had the enjoyment of a drink to get that way, but I'm getting more like myself with each decrease of the Decadron, according to family. I did a lot of reading and thnking before I made my decision. In the end, I went with my gut feelings, and feel comfortable with the result. Getting out of the hospital early, and my neurosurgeon (and staff) reports about how well I'm doing have helped alot as well. I'll be thinking of you and am always available if you ever want to talk it out. What ever you decide, trust yourself... we don't get to make too many decisions in this particular game! Best of luck and love, Rentrac __________________ Oct. 2003: Dx age 48, Stage IIIA Ductal Ca. dense dose neoadjuvent AC. BrCa 1&2 -, ER+, PR-, Her2+. 2004: R mastectomy, 3+ nodes, dense doseTaxotere ( allergic), total hysterectomy, radiationx36 . Tamoxifen x6 mo., Arimidex x9 mo. Jan. '06: Multi left metastatic nodes left neck. Stage IV. Taxol, Carboplatin (allergic to both), Herceptin, radiationx27. Herceptin cont'd. 1 mediastinal met in old rad field. April: 2 brain mets - Rcerebellar, Ltemporal lobe. Gammaknife. Stop Herceptin, Start Tykerb. May: CyberKnife-mediastinal node, Zometa restart. July: New RLung mets. Xeloda add. Jan. 2008: CT: Lung mets shrinking. Fatty liver w/increased liver function panel. Feb '08: MRI: brain mets back, 2nd GammaKnife. June: Migraine headaches from cerebellar tumor. Team for WBR - Choose Craniotomy on Cerebellum only. Aug: Crainiotomy successful. Sept: PET -right lung apex clean; left internal mammary artery appears malignant. Herceptin in future. Left mastectomy?