KMPonder Member Posts: 102
My hubby, whose GBM was only in the optic chiasm and thus caused blindness, now has two new areas of GBM tumors - corpus callosum and near the basal ganglia. He had Temodar in '09/'10 for the three inoperable AA tumors, which still mind you look great. His Duke doctor is trying him on CCNU, but she's advised the prognosis is poor and this is "salvage" chemotherapy. We do love her and hope to prove her wrong with her expectation of months, but wondered if anyone had been on this CCNU before.

He had been on Etoposide for one cycle and these two new areas of GBM presented themselves, so that nor the Temodar seems to want to stop these darn tumors.

Going back to a local rad onc and neurosurgeon tomorrow to see if the gamma knife is still an option. Duke still says no, since he's had WBR and stereotactic, and I suspect with the spread of this disease it will no longer be recommended.

It's too surreal to think he's endured three malignant types of brain cancer. A cure can't come too soon.


  • Rory1987
    Rory1987 Member Posts: 120
    My rad onc showed us a
    My rad onc showed us a pamphlet during my last treatment about a cancer drug used for a different cancer and according to the pamphlet one doctor used it for GBM and it worked, I forgot the name of the drug though. But it was still experimental

  • patriciam
    patriciam Member Posts: 39
    My daughter was on CCNU a year ago due to AA3. CCNU dropped her blood counts down and it took a few weeks to recoup, but other than that, it was tolerable.
  • jstepp
    jstepp Member Posts: 1
    I saw your post from April, indicating your inquiry into treatment for your husband's brain tumors. You mentioned that he is being treated at Duke.

    I am 46 years old & recently had my 2nd brain surgery (at Johns Hopkins in Baltimore) to resect a recurrent gbm (grade 4 astrocytoma). I managed to make it 3.5 years before it grew back after my first resection surgery (in most cases the tumor returns within a year).

    I visited Duke last week for a second opinion for my treatment. While it may not be applicable for his specific case, you may want to ask if Avastin might be an option. This is not chemo therapy but an angiogenesis inhibitor. This drug restricts blood flow to the tumor so it can't grow. Duke was instrumental in getting this FDA approved for certain cancers.

    I wish your loved one success in his fight against this disease.