Need feedback please. Brother dx 9/11/07 inoperable 4 cm. GBM IV, right frontal lobe, basal ganglia, some midline shift very near brainstem. he received the usual simultaneous Temador and radiation (EBRT) for 6 weeks and is now cycling the Temador 5/23. MRI's done Dec., Feb., and Apr. 7th have shown that his tumor has remained stable but he has steadily declined since Jan. with a major decline starting Apr. 14th. He is now bedridden, is not always in control of bowels, has had a urinary catheter since leaving hosp. left side of body, including vision wasting away.
I'm frustrated with his neuro-onc. at Indiana Univ. He always chooses to continue the cycling of Temador and nothing else since the tumor appears stable on the MRI. How about some more aggressive treatment I say. At this point my sister and I (making most of the decisions) are ready to quit the treatment and MRI's (he can barely get through one) and also veins are very hard to get into and esp. getting the contrast dye in: it takes 30 to 40 min. to find a vein that won't blow under the pressure of the thick dye insertion and he is not at all tolerant of pain. He's a screamer.
He's decided he still wants to fight even tho blood draws etc. are extremely hard for him. I wonder what can be done. I'm pretty much fed up with the 5/23 Tem. regimen.
I wonder if he is too weak to endure Avastin CPT-11 treatment of if our Dr. would do it. He has said in the past that he could use it off label without us having to go to a trial to get it. We've thought about getting him to another oncologist for 2nd opinion but would have to hire a medical transport as it is now impossible to transfer him from wheelchair to vehicle by any traditional means.