My husband was diagnosed a year ago with GMB 4 and prognosis was 12 to 15 months if he had treatment. He had standard of care, radiotherapy and chemotherapy for six weeks - the tumour was inoperable on the left temporal lobe. He then had three more treatments at home of Temolozide. After MRI scan in December the consultant advised against further treatment as could see no value particularly as my husband had a blood clot on his lungs in January this year so was very poorly.
Two weeks ago he started being agitated at night and was prescribed 0.5mg. Lorazepam to be taken at bedtime. It helped with the agitation but now he sleeps more and more and I don’t know if it’s the Lorazepam or the general progression of the disease. He can sleep 18 hours a day easily - the prescribing nurse said Lorazepam doesn’t build up in the system but I’m not sure. I want him to have a good night’s sleep of course.
No-one seems to be able to tell you anything about the progression of this awful disease and I’m struggling. Thank you for reading this.
Did the consultant say anything much about the MRI scan results other than no further treatment? My wife had a scan in November when they refused further treatment because he said the rate of growth since her last scan 4 months ago indicated that it really wouldn't provide much benefit i.e. the tumour was just too aggressive. It was at that point we were referred to hospice.
Before the consultant meeting she was already sleeping a lot like nearly all the time without any meds that would make her drowsy. Then she started to have seizures so we had to give diazepam or midazolam to keep her mildly sedated which of course meant she slept even more.
As we got nearer the end I was glad when she slept because she was so peaceful then. It's so hard though knowing that their time with you is so limited.
Sending a hug
Chris
