patty z
02-18-2004, 04:46 AM
I'm sorry, I guess I repeated myself to you as well! This information may help others so don't apologize. I have included my email address here for you now.
My radiation onc keeps insisting that I should have WBRT, because that is as you say, the standard protocal. He is quite upset with me for refusing. But it is afterall, MY brain. The response rates are low, the length of response is not long when response has been seen, the side effects, both given and possible, are not acceptable to me, personally.
But, since it is 'standard protocal' the doctors must push it. Even though there are other options now.
IF I were to concede at a later date, I would wait until the drug RSR13 is available. That has been shown to almost double the response rate of WBRT and length of response. Although it still does nothing for the multitude of side effects, some of which are potentially severe and permanent.
I have not had GammaKnife, but SRS. Different machines and type of radiation but otherwise very similar.
more hugs,
pattyz
My radiation onc keeps insisting that I should have WBRT, because that is as you say, the standard protocal. He is quite upset with me for refusing. But it is afterall, MY brain. The response rates are low, the length of response is not long when response has been seen, the side effects, both given and possible, are not acceptable to me, personally.
But, since it is 'standard protocal' the doctors must push it. Even though there are other options now.
IF I were to concede at a later date, I would wait until the drug RSR13 is available. That has been shown to almost double the response rate of WBRT and length of response. Although it still does nothing for the multitude of side effects, some of which are potentially severe and permanent.
I have not had GammaKnife, but SRS. Different machines and type of radiation but otherwise very similar.
more hugs,
pattyz