How much Decadron for end-stage gbm?

Not sure if I chose the right "topic" for this question.

My brother has fought a two year battle with gbm. For the past six weeks, he's been under hospice care, needing total care because he can do nothing except hold a cup with his left hand. He hasn't been out of the hospital bed since he got into it six weeks ago. He cries when we visit and begs to be released from his suffering. It almost seems like something is prolonging the dying process against his wishes.

He's on 16 mg/day of Decadron. I'm interested in hearing the experiences of others. Is this a pallative dose or is it only prolonging the dying process? I have a call in to his oncologist but I haven't heard from him yet.

Further info: my brother is/has been eating very little, drinking only a small amount of water/day. He's lost so much weight and muscle mass. He has little pain--small doses of morphine control that pain. He has much more agitation than pain. Ativan and Haldol seem to bring it under control. But sometimes, his wife doesn't get it into him quickly enough.

I've looked at the timelines on the brainhospice website and it seems like he's stuck at 1-3 weeks from death for the past 6-8 weeks.

I almost feel guilty for posting this question. It might seem like I want my brother to die. His death will be very hard but seeing him as he's been for the past six weeks is horrible also.

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It seems I went thru similar conflicting feelings with my mother. She was dying of primary liver cancer. She was my rock in life and I could not imagine life without her.
Don't feel guilty; we only want what is best for our loved one. I had been told that the dying will hold on to life out of love for their survivors, so I ended up giving Mom permission to leave us; it was hard on me but I didn't want her to continue in her current state out of duty to family.
She died in 2001 and I still catch myself amazed that I have done so well without my "rock." My husband has become my rock in my struggle with GBM.

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Hi sisternancy,
I know I've read discussions about your question here on one of these threads, but I can't remember which one. I thought it might have been "GBM IV Related", but I just scanned through there and didn't see it. It might be under the topic of Living with a brain tumor. See if there are Hospice related discussions on there. People who could answer your question are on the discussion "How are you," where ttree just lost her husband to GBM this past weekend. Unfortunately, there are a number of people on here who are facing late stage/end stage GBM. My husband is only 9 months since diagnosis and doing really well. I'm not in that club of the soon to be widowed yet. I dread it more than anything. I know my turn will come, but I'm trying to focus on the blessings of today. I pray a lot for all my online friends at Inspire. I hope you find the information you are looking for. My husband only took decadron for a very short time immediately after his craniotomy last December. Praying for a end to the suffering for your brother.
Becky

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Hi Becky, I did see some other Decadron posts but they didn't quite answer my question.

I pray that your husband does well for a long time. My brother fought a good fight against gbm and did very well for much longer than I expected. He was dx in June 2010 and came through surgery and treatment with NO deficits. His first bad MRI came in Nov 2011 but even then he did not have any symptoms until Feb 2012. Since then, he's been in decline and since about June it's been very difficult. But all this to say that my brother survived for more than 2 years after dx. Don't give up hope.

Blessings, Nancy

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Dear Nancy,

I'm so sorry for what you and your family are going through. I would call this a palliative dose. I posted earlier about use of dexamethasone in end stage use, I think it was titled something to that effect. There was a nice discussion in that thread if you can find it.

Let me know if you can't find it, I will forward it to you.

Blessings,
Liz

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