Mom has GBM4, they say it's inoperable

celluloidheros · Regular Joined: 23 Aug 2007 Posts: 21

hello, I sent a few notes a couple months ago when my mom first came down with GBM4 July15th. She is now in the hospice on about 12 differnt medicines. dilantin, Decodron, Oxycontin, haldol, ativan etc... She is bedridden and did something odd today, she started started screaming likw she was in severe pain but seemed to calm down when the nurse came, she did this 2-3 times over a two hour period, I am trying to find out what the cause is. is she dilusiional, is it the tumor or a medicine interaction etc.. has anyone seen this ? thanks, DC
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Thanks, CH

Noid · Experienced user Joined: 16 Oct 2007 Posts: 57

can your mother speak normally otherwise? Perhaps if not, she was calling for the nurse??? or trying to tell you something before she came in. My heart goes out to you.

celluloidheros · Regular Joined: 23 Aug 2007 Posts: 21

Hello, she can communicate some like yes or no and is lucid most of the time. She just started saying no no no and then screaming like she was in pain, the nurse came in and calmed her down but we can't figure out what is making her upset. it's a terrible desease. take care, dc
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Thanks, CH

brainman

I wish I knew with 100% certainty the answer to your question. I have seen many long-term patients who could only communicate be screaming. Some times it is delirium. Some times it is the interaction of the medications. There is a condition that is unofficially called ICU Psychosis because people in long-term care in an ICU seem to go psychotic and see or hear things that are not really there.

I am very sorry about your mother's condition. My mother died of a GBMIV over 9 years ago, just two months after it was originally diagnosed.

You and your mother are in my thoughts and prayers.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

nell · Regular Joined: 19 Aug 2007 Posts: 25 Location: Ohio

My mom also had GBM4. My biggest fear was that my mom would be in pain. She never verbally communicated that she was in pain, so I looked for combinations of signs, like a grimace when dressing or moving her, raising of arms or legs when sleeping, a furrow of the brow when sleeping, etc. When I saw these signs, I would increase her ativan and or moraphine slightly (with Hospice permission, of course) and see if pain signs went away. They always did. It was a delicate balance of steroids and pain meds that I feel kept my mom comfortable and yet not over drugged. It is hard to know when a brain tumor patient is in pain—under the advice of a great Hospice nurse, I believed that treating for possible pain was better than not treating for pain at all. I hope this helps. My thoughts and prayers are with you.
Nell

celluloidheros · Regular Joined: 23 Aug 2007 Posts: 21

Hello, My mom was rehabing in the nursing home for two months, then at home for another 6 weeks or so, she them could not move her right side very well so was forced to go back in the nursing home last week. she is very frustrated with her plight but is more sad and weepy because of this. She also has lost the abilty to speak in coherent sentences. I called her cell phone by accident and heard her voice yesterday and it really hit me hard. She seems to be having odd dreams at night and also is having trouble swallowing her pills. They have started her on liquid Oxycontin but it is sublingual and she can't hold it under her tongue for long. She seems so with it some of the time and then starts screaming. she says " No No No No ... Whoa Whoa Whoa .... and then Screams" like she is in terrible pain. We will work on this and try to comfort her. She is still eating and has developed as weet tooth. My sister is coming to visit again on thursday and she is a dentist so she helps out quite a bit. I am looking into the Novo100 ttf device. Take care, DC
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Thanks, CH

ksplat

Dear CH
So sorry to hear of your Mom's plight. We went through similar experiences with my Dad & his dementia. It was so very hard to see him like that, you are in my thoughts & prayers.
I pray for your strength & love for your Mom to help you through this awful illness.
Cheers, Aussie Angie.
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Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman

CH, I feel very sad, as if my heart was going to break, when I read this further information about your mother's condition. My parents never became that way. However, in the hospital and nursing facilities where they spend much of their last days, I did hear a lot of man and women yelling and screaming as if they were in great pain. I do not know why this happens to some and not to others, but I can imagine how difficult this must be for you and how frustrating is must feel not to be able to do anything do ease their "pain." I really do not think it is physical pain as much as it is a deep, otherwise inexpressible emotional pain she is feeling. Like a baby crying out, you first make sure that there really is no physical reason. If no reason can be found, you hold them for as long as it takes. Just hold her hand to speak or sing gently to her.

God be with you and your mother.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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