pattyz
10-12-2004, 10:49 PM
Oh, I sure remember that call, Alicia. It was just paralyzing... at first. Then I spent the next 24 hrs researching so I had a partial plan when I spoke to my doc at appt time.
My first dx of brain mets in Sept of '02 was the same as yours: two tumors, 1.5cm and 6mm. All things considered, it was agreed that I was a 'perfect' candidate for ONLY Stereotactic Radiosurgery. Much like Gamma Knife, with the screwed on headframe, but using a different machine etc.
Annemarie said it so very well. I would have said the exact same thing! Inspite of this being the most frightening of dx's, after two years and five focalized treatments for a total of 16 brain mets, I have been NED for seven plus months.
Even as recently as last fall, I didn't expect to make it until spring. But, I am now feeling and doing very well.
I never had whole brain radiation, which was only my choice to fight against. The procedures I had were spread out over a year and a half, taking up just a day at most, a few hrs at the least.
If you opt to go for WBR, you may want to try to get into the trial of RSR13. It is a drug that improves the response and length of response of WBR by nearly 50%.
Also there are a number of different other drugs used in conjunction with WBR trying to increase it's effectiveness. Even the supplement Melatonin at high dosage has been shown to be effective to some degree and help with some side effects. I have been taking a medium dose for over a year now.
The studies show that the combination of WBR and a focalized treatment have the best outcome. Yet, there have been too few studies done using only a focalized treatment. My case could be used as a 'retrospective' and I know there are more like me out here.
Hope this has helped somewhat...Please take to heart what Annemarie has said..
hugs,
pattyz
Posted by: Alicia - October 12, 2004 (7:44 p.m.)
hi all,
got the call today I have two brain mets. One is 1.5 cm. and the other is smaller. I have my apt with the radiation oncologist. My regular onc said we may be looking at a combination of gamma and whole brain?? But I will not have exact info until I see rads doc. Any suggestions... I am in dc area. Good gamma ray facility? Any infor orgood questions to be aware of is greatly appreciated! Thanks alicia
My first dx of brain mets in Sept of '02 was the same as yours: two tumors, 1.5cm and 6mm. All things considered, it was agreed that I was a 'perfect' candidate for ONLY Stereotactic Radiosurgery. Much like Gamma Knife, with the screwed on headframe, but using a different machine etc.
Annemarie said it so very well. I would have said the exact same thing! Inspite of this being the most frightening of dx's, after two years and five focalized treatments for a total of 16 brain mets, I have been NED for seven plus months.
Even as recently as last fall, I didn't expect to make it until spring. But, I am now feeling and doing very well.
I never had whole brain radiation, which was only my choice to fight against. The procedures I had were spread out over a year and a half, taking up just a day at most, a few hrs at the least.
If you opt to go for WBR, you may want to try to get into the trial of RSR13. It is a drug that improves the response and length of response of WBR by nearly 50%.
Also there are a number of different other drugs used in conjunction with WBR trying to increase it's effectiveness. Even the supplement Melatonin at high dosage has been shown to be effective to some degree and help with some side effects. I have been taking a medium dose for over a year now.
The studies show that the combination of WBR and a focalized treatment have the best outcome. Yet, there have been too few studies done using only a focalized treatment. My case could be used as a 'retrospective' and I know there are more like me out here.
Hope this has helped somewhat...Please take to heart what Annemarie has said..
hugs,
pattyz
Posted by: Alicia - October 12, 2004 (7:44 p.m.)
hi all,
got the call today I have two brain mets. One is 1.5 cm. and the other is smaller. I have my apt with the radiation oncologist. My regular onc said we may be looking at a combination of gamma and whole brain?? But I will not have exact info until I see rads doc. Any suggestions... I am in dc area. Good gamma ray facility? Any infor orgood questions to be aware of is greatly appreciated! Thanks alicia