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pattyz · 10-10-2006, 07:23 AM

Dear 'jones',

I have had brain mets for four+ yrs. A total of 24 tumors. At first dx there were two that I had treated with SRS, the headframe type focalized tx similar to Gamma Knife. I was indeed warned that there could be more that would show up without doing WBR.

Six months later the MRi showed another 14. But, I had no symptoms. These 14 brain mets were then treated (MY CHOICE) over the course of the next 12 months with two more SRS procedures and two CyberKnife tx's. I faced off with rad onc many times about refusing WBR. A hard thing to do, when speaking with THE EXPERT.

About a year later ('sp. 2005), I was dx'd with an additional 8 brain mets. Was then told that I was no longer a candidate for focalized rads as they are cummulative. Yet, WBR was once again recommended. Now that was a real brain twister to me!!!

I still had no symptoms at that time and waited and watched progression. Finally in Aug. of '05 I began a chemo cocktail cooked up for me by my onc with two drugs I had given him research material on. I also became dizzy 24/7 just a few days prior to beginning my chemo schedule.

After less than a week on my Xeloda/Temodar the dizziness decreased and was gone in 7 days.

Mri's showed near 50% shrinkage TWICE, with no new lesions. The following 2 MRis' showed stable. I then went on chemo break with 2 MRi's showing 1: stable 2: minimal increase in two of the 8 lesions.

I have now been back on chemo with Mri again showing decrease in all 8 brain mets, no new lesions. I have been responding to chemo in the brain now for just over a year with one short break.

My tumors have been throughout my brain. Twice (one now) on brainstem/pons. The largest was at first dx: 1.5cm. Others ranging in size from 3mm to 12mm.

I had 24 hrs to do some research after my intial dx of brain mets... That is all it took for me to decide to refuse WBR. I have had no regrets; only reinforcement from further research and personal stories in my decision.

Hope that is helpful and what you were looking for...

Best to you,
pattyz

10-10-2006, 07:23 AM	#2
pattyz Senior Member Join Date: Mar 2006 Posts: 306	Dear 'jones', I have had brain mets for four+ yrs. A total of 24 tumors. At first dx there were two that I had treated with SRS, the headframe type focalized tx similar to Gamma Knife. I was indeed warned that there could be more that would show up without doing WBR. Six months later the MRi showed another 14. But, I had no symptoms. These 14 brain mets were then treated (MY CHOICE) over the course of the next 12 months with two more SRS procedures and two CyberKnife tx's. I faced off with rad onc many times about refusing WBR. A hard thing to do, when speaking with THE EXPERT. About a year later ('sp. 2005), I was dx'd with an additional 8 brain mets. Was then told that I was no longer a candidate for focalized rads as they are cummulative. Yet, WBR was once again recommended. Now that was a real brain twister to me!!! I still had no symptoms at that time and waited and watched progression. Finally in Aug. of '05 I began a chemo cocktail cooked up for me by my onc with two drugs I had given him research material on. I also became dizzy 24/7 just a few days prior to beginning my chemo schedule. After less than a week on my Xeloda/Temodar the dizziness decreased and was gone in 7 days. Mri's showed near 50% shrinkage TWICE, with no new lesions. The following 2 MRis' showed stable. I then went on chemo break with 2 MRi's showing 1: stable 2: minimal increase in two of the 8 lesions. I have now been back on chemo with Mri again showing decrease in all 8 brain mets, no new lesions. I have been responding to chemo in the brain now for just over a year with one short break. My tumors have been throughout my brain. Twice (one now) on brainstem/pons. The largest was at first dx: 1.5cm. Others ranging in size from 3mm to 12mm. I had 24 hrs to do some research after my intial dx of brain mets... That is all it took for me to decide to refuse WBR. I have had no regrets; only reinforcement from further research and personal stories in my decision. Hope that is helpful and what you were looking for... Best to you, pattyz