May 10, 2012 - 5:28 pm
My husband Dave was dx with a GMBIV in Nov 2011. He is 40. It is in-operable. His tumor is towards the back of the Corpus Callosum and it has tentacles and some tumor intertwined into the Corpus Callosum He is being treated at Yale New Haven Smilow Cancer Center and has gotten a second opinion from Dr. Gutin at Sloan Kettering. He has gone through 6 weeks of temodar and radiation which shrunk the tumor by around %50. He is now gone through 2 Cycles of 5/23 at 320mg temodar. during the first cycle the poor guy got hit with a stomach bug so they left the dose the same on the second round to make sure it was not the temodar.
This past Tue they did and MRI and the NO said that he had new enhancements, some parts of the tumor were more prominent. The tumor did not grow or shrink but there was a thickening in places. His NO said it could be Tumor growth or it could still be necrosis from radiation. He said that we are still in that window of time (feb 1 we finished) that it could be the radiation. He said it is a 50/50 that it could be tumor. I could tell he was choosing his words carefully. I go to this NO for my tumor and have been seeing him for myself since 2006 So I know him pretty well. I have also told him that my husband mental status has been very fragile (it would have to be another post).
He asked my husband if he had any new symptoms and Dave told him that his legs and feet were tingling, he was numb under his arms and that he was having balance issues. His NO asked if fell and he said no. I suggested he elaborated on the balance so Dave stood and was describing about being in the shower Dave stumbled right there in front of his NO. I did not know about these symptoms until the morning of the appointment. I have been getting a lot of "I thought I told you" and then a blank stare.
Dave's NO decided to put him on Avastin. If those enhancement (spots?) go away then he can stop Avastin if not he will probably keep him on Avastin. He is also raising the Temodar dose by 25%.
I tend to try to read between the lines. His NO tries to keep things sounding like we are having treatments and going forward and thats that which what Dave needs. (I need the truth but can't really ask hard questions in front of Dave. I know that I could call his NO but sometimes I don't have a specific question.) He never gave Dave the you have x months to live. And I don't think he wants to break whatever spirit Dave has. Dave does not have a positive attitude and he is not a fighter. and we have an 8 year old son.
So here are some of the conclusions I have come too. He has his age helping. But it being intertwined into his Corpus Callusom and being in-operable is not a good thing.
So opinions from people who have greater knowledge than I?? Please be hard core honest.
Thanks for sharing and taking the time to read my post.