Let me apologize in advance for all those privately emailing me for an update...things have just been so chaotic lately between work, kids, and traveling all over the country. So here goes...
We have 3 new tumors. 2 on the motor strip that are responding to avastin and one extending into his occipital lobe that is not responding at all toavastin.Wehave been evaluated by several people at different facilities for surgery, gamma knife, radiotherapy, autolitt/neuroblate and got turned down by all. Apparently the growing tumor is too diffuse /multi-focal. Cleveland clinic was also a big flop for us.
Because he has failed Avastin after only 8 weeks, it has eliminated him from many different trials. There are 2 in particular that we are waiting on. The temodar/parp inhibitor with avastin should be re-opening soon. It was shut down for a toxicity event that was not related to the therapy so it should be opening back up. The other trial consists of avastin/cd105. The avastin is helping two of the tumors so we want to keep using it. The cd105 may help the growing tumor if it is related to egfr expression. We havent made a decision yet and wont be able to until we see the neurosurgeon on thursday.
So, heres the good news (maybe). After getting back from Cleveland clinic, my husband's original neurosurgeon called and said he would consider surgery for the growing tumor. We will know for sure on Thursday, so, in the meantime, we have stopped Avastin. He needs 6 weeks off before the surgery can be done.
Currently, my husband has remained pretty stable except for some episodic visual stuff (flashes or stripes of light, blurriness) in his left eye. It is becoming more frequent so Im sure it is directly related to the new tumor. We are not on decadron but there doesn't seem to be too much mass affect at present and he wants to stay away from it as long as possible.
Thats it for now...Im putting it all in God's hands.