Hmmm....I'm thinking I'd go for a second opinion if I were in your shoes. My husband did not have a good response to Temodar. He had some shrinkage from the initial treatment in the primary tumor--about 25%--but he also had some cystic areas with cancerous linings progress in size during treatment. Eventually, they stopped chemo and completed a second craniotomy, and removed all the "bad stuff" they could see. Since then, we have gotten the opinions of three other oncs. and they all have said he needs additional treatment with more aggressive chemo so we are basically starting over almost a year into this disaster. I wish we would have gone for a second opinion a long time ago. Maybe he would be nearing the end of treatment and feeling better by now. It is not good to second guess the decisions you make along the way, but it is hard not to do so. The first onc wanted to just stop treatment after the second surgery because he said there was "no data to support that stopping and restarting chemo will have any therapeutic benefit".
Getting a second opinion can be as easy as sending his records for review at another facility. If you can get to a neuro-oncologist, do so. Many people on this board speak highly of Duke in NC. We will be going to Dr. Arenson in Denver next week. We will then return home to Ohio and he will begin treatment locally with a medical oncologist that has agreed to work with us and coordinate treatment with Dr. Arenson.
Good luck!
Jackiekay