Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello, me was diagnosed 8 mets with the brain. 4 mets of 4 mm and 4 mets 1 to 4 mm. One offers to me to treat the brain in entirety with the radiotherapy and then to treat the mets visible with gamma knife. I cannot too what make. IT seems to to me that Charity had same the protocle, but I am not certain. Is the rate of success good?

Thank you for your council,

Cricri

CriCri, 8 mets is a big number but since the volume is relatively small the Gamma Knife is a good choice anyways. The procedure is known to cause the temporary edema and brain swelling so may be WBRT before of the Gamma Knife will be to much. Could they do a Gamma Knife before, then let it heal and then they WBRT can be done if they still fell it is needed. Charity had Linac (it is also a radiosurgery as Gamma Knife is but using a different type of radiation) before and WBRT later. Since then she had some other problems so I am not sure if she is reading this discussion now.

Hello Olga, your information is always very iimportant.

The neuro prefers that I receive the radiotherapy before gamma knife. You know the doctors here are not informed any for the ASPS. Then, will be able you to inform me about different point.

Do you know the effectiveness of the radiotherapy on cerebral metastases? Are the side effects difficult? Does the hair push back?

I want to have the best quality of possible life for me and I would like to make the good choice.

Thank you for your help,

Cricri

Dear Cricri,
I am not a doctor so I can't provide medical advice, but on the basis of our knowledge and networking with other ASPS patients, I agree with Olga's opinion and recommendation that you possibly have Gamma Knife first, and then perhaps the Whole Brain Radiation if it is determined that it is necessary once you have recovered from the Gamma Knife procedure. We were told by our daughter Brittany's neurologist that Gamma Knife could be done as many times as necessary if new tumors developed. Although the Gamma Knife procedure was heartbreakingly unsuccessful in destroying Brittany's tumors and she ultimately had to have them surgically removed five months later, we think that the Gamma Knife may have not worked because the tumors were already too large (about two centimeters) However, several ASPS patients have had a successful response when their tumors were smaller, as yours are. I would urge you to read the entries in this Brain Metastases forum from Charity and Beth regarding their experience with WBR, and to possibly contact them for further information about the outcome of the treatment. Our continued special caring thoughts, best wishes, and special prayers will be with you.
Reaching out to share special caring and continued Hope,
Bonni Hess