My wife, aged 48, was diagnosed with a fairly large GBM-4 in April. Surgery was able to remove 50% of the tumor, and she has had the usual radiation and chemo (Temodar), along with Decadron, Kepra, etc.
About a month ago, she lost the ability to stand up. The doctors thought it might be due to the relatively high dosage of Decadron, but they also thought it might be due to the tumor location (frontal and parietal lobes) and the irritation from the radiation. After initial re-hospitalization, she was released to a “hospital-to-home” facility, which is a nice euphemism for a nursing home. She has to be transported via wheel-chair van to Hopkins Monday-Friday for her radiation.
Mentally, she is very confused, especially short-term memory issues. She has little appetite, and although she is getting PT and OT, and the Decadron has been tapered to 6 mgs per day, she has not regained much strength or motivation.
We are almost at the end of radiation and the first round of chemo, and she has been approved for Avastin which will start about two weeks after the end of radiation.
The doctors tell me that theoretically, after the irritation from the radiation subsides, and the Avastin kicks in, she might see an improvement in her quality of life.
Question: has anyone had as similar experience? What is realistic? Are the doctors blowing smoke? Is there anything that you can recommend?
Mike