Hi, just wondered if there is anyone knowing something about brain metastasis of SS?
My husband did have mets on his brain during the course of his “journey” with SS. It was not primary site, rather we found it when he had to have a brain MRI as part of his participation in a clinical trial. He was treated twice with gamma knife radiation. I’m happy to answer more specific questions if you have them.
Traceyb
Thanks Traceyb. My mother had SS several years ago. she was treated with surgery and radio-therapy. Last year, there were several mets found in her lungs. she was treated with surgery and chemo. But she couldn't tolerate the side effects of chemo. She took Votrient instead. Votrient seems to be working. Recently there are about twelve mets found in her brain. The largest one is about 4 cm. She is going to be treated with Cyberknife. Does Cyberknife or Gamma knife work? Can she still take Votrient during the period of treating brain mets?
I don't know a lot about cyber knife but gamma knife did work on my husband's brain mets, however they were much smaller than 4cm which could be why cyber knife is being recommended. I would definitely ask the radiation oncologist about the difference and when one would use one over the other. Regarding the use of votrient while treating the brain mets -- that is a very good question and one that should be discussed with the oncologist and radiation oncologist doing the procedure. Our experience with votrient was not good. My husband experienced tumor bleeds almost immediately once he started taking the drug. First, a tumor in his spleen had a bleed and it was suspected it was from the votrient. His oncologist wanted to keep him on the drug however, as it was really our last treatment option. Once he recovered from the spleen tumor bleed, he went back on the votrient and one of the mets we were planning on treating with gamma knife bled causing mobility issues. One can't say for certain it was from the votrient, but it is suspect. There are a lot of questions on whether votrient can break the brain barrier and impact mets and therefore, the bleed was something we knew could have happened at any time. I would suspect they would take your mom off of the votrient for a period of time before and after the brain met procedure, cyber or gamma knife. Again, this was our isolated experience, and I don't think the norm for votrient, but something you should absolutely discuss in great detail with your doctors. Best of luck to you and your mom in fighting this horrendous and vile beast. Please keep me posted and feel free to ask any other questions you might have.
Traceyb