Thanks for the information.  Sorry about you husband! This is such a terrible disease breaks you heart to watch a loved one suffer and feel helpless.

Thank you Marion for your feedback.  I did find the just the little bit of info you shared on the  Burzynski Clinic after I made the post.  I do appreciate all of your information.  I am just grasping at straws at this point.  She did do radiation when we first found out and it helped with the pain a bit, but now it is worse than ever.  Thanks Lainy, you are right.

Lainy, thanks for your response. No we live in N.H.  This Clinic was suggested by someone.  Many people say that it is a scam, just looking for money and some say it saved them. It is very expensive and most insurance companies don't cover the cost.  We have a second opinion scheduled at Dana Farber in Boston to see if she would be able to do any clinical trials. Her Dr. is doing pallative care (chemo) did rad. already she says at best time left is 12 months, but with her weakness and pain levels the ONC says probably less time.  Right now she is in the hospital recovering from a flu and uti, soon to be going to rehab to try to rebuild her strength.  We just found out in November that this was back and she is going downhill so fast.  Just concered about  precious time and how uncomfortable she has become.

I am heartbroken, my mom has been in remission from this terrible disease for the past 15 months and now we have just learned that she has spinal metastases, and her time is very limited.  She is in so much pain and just went down hill over night.  I am desperate and looking for anything to help her.  Has anyone been to the Burzynski Clinic in Texas???