My husband was diagnosed with GBM on August 2007, surgery+temodar, temodar for 4 months (did not help), Avastin+Cp11 for 4 months (after 2 months considerable shrinking, after another 2 months the tumor was regrowing), two weeks ago we started BCNU. A week ago he started having headacks and got more and more confused. MRI showed a stable tumor but growing swelling. He was in the hospital since Thursday getting IV decadron (4mg x 4 times a day) and pain killers when needed. He is getting better as far as the confusion and disorientation but still has the headacks.
I am wondering if this is how the end starts. Since I am working full time and want to take time off to spend with him toward the end, it is important for me to know more or less how much time is lest. I am already spending more quality time with him but I am running out of days off and I want to keep enough to the end. The doctors keep saying that it is hard to tell how things will develop from here. Was anyone in the situation I described and can tell me what happened next? I know each person is different but in average we all going through the same nightmare.
By the way, I expected this swelling to start since we stopped with the avastin. I bagged the doc to combine the BCNU with avastin but he refused since they don’t have this protocol at MSKCC. I have an app at duke after our next MRI (they can’t do anything now since BCNU stays in the body for 6 weeks) but I am not sure how well he’ll function by then. Unfortunately, the less functional the patient is the less options he has as far as clinical trials (that is why we need to be careful when reading results of clinical trials. There is a considerable bias in the selection of patients – but this issue for another posting…)
Thank you all and god bless,