GBM – end stage question – Brain Tumors Forum – Cancer Forums

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Thread: GBM – end stage question

Re: GBM – end stage question

Dear Imli, sorry to know what you are going through. As I understand, that is the way this disease progresses. The patient switches to coma later and then passes away in sleep. When death is close, breathing pattern changes and the color of urine goes darker due to lack of sufficient oxygen in the body. Death is usually painless.

My mother is in the end stages of GBM. She is currently completely bedridden, cannot talk or comprehend and sleeps all the time. When she does open her eyes, her gaze is unfocussed and glazed. Her vitals are strong, and she is being fed via a tube. Has a catheter- Urine and stools normal. I know this is progression of the disease, but I am still at a loss and its hard to see a loved one deteriorate. We were told that the symptoms in her case were due to edema and swelling post Gamma knife, may not be the tumor. This has been going on for 5 weeks now.How long can this go on? I know a lot of you have lost loved ones to the disease, and am hoping your collective response can give me a better picture on how much more time she has. She is diisplaying symptoms ( of the timeline chart on brain hospice) of 1-2 weeks for over 1 month now.

New User Join Date Jan 2010 Posts 14

An update on the situation and a little confused. Mom had been sleeping and opening her eyes for a few minutes at most, occasionally-when she was physically moved. This has been the situation for approx 6 weeks. No response to any other stimuli, no recognition or cognition. Last week she had low grade temperature for a few days and still feels warm occasionaly. Since the last 3 days however, her eyes are open and gazing at the ceiling for hours. Her breathing sounds like she is snoring lightly.Her last MRI was in Nov ’09 which showed lots of Edema, post Cyber knife ( Aug 2009). CT in Dec ’09-showed heavy midline shift, when she became paralysed. bedridden and non-cognizant after which she was given steroids that only marginally helped her.
I’m not sure what to make of this, in that she has gone from sleeping continuosly, to opening her eyes and gazing for hours. Is this a sign of improvement? Should I push for another MRI?

Administrator Top User Join Date Oct 2005 Location Tennessee Posts 7,967 Blog Entries 5

Hi Imli. I don’t know what it means that your mother now has her eye open for a long time but still not responding to others. Does she track? That is, if you put your finger in front of her eyes and move it, do her eyes follow your finger? If not, she is probably not really seeing anything just sleeping with her eyes opened. She needs to blink her eyes or they will dry. In hospitals, some times they go so far as to tap eyes closed when someone sleeps with their eyes open so that they do not dry.

In terms of getting an MRI. for sure you need to make her doctor aware of this change and let him/her advise you on what needs to be done.

New User Join Date Jan 2010 Posts 14

Brainman- No, she does not track. Keeps Gazing and but does blink on her own though. She has been off steroids for approx a month now as well.

Regular User Join Date Oct 2009 Posts 18

response to your queries

Sorry imli, as far as my experience with this disease goes, it appears that the disease is spreading within the brain and is taking away your mom slowly. I am not sure if scans can reveal anything since growth and spreading could be at microscopic level. A doctor would be able to advise you better. Sorry again, it is painful to observe the patient at this stage.

Regular User Join Date Oct 2009 Posts 18

Re: response to your queries

signs of increasing body temperature are also common, as I understand. I am not sure how that connects with the disease.

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Just a quick word about the Brain Hospice timeline – Brain Tumors

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Thread: Just a quick word about the Brain Hospice timeline

Just a quick word about the Brain Hospice timeline

So, I’ve recommended the brainhospice dot com symptom timeline as a reference point to others in the past. I’m not finding it very accurate as we wind down.

At this time it is about six weeks since my sister fulfilled the timeline’s descriptors for 2 to 5 days left, and for roughly two weeks she’s fulfilled the descriptors for just hours .

I knew the top of that timeline was kind of iffy but now I’m finding the bottom is too.

Thank you all for your good thoughts and kind wishes. I send ’em back atcha.

Top User Join Date Jan 2013 Location Central Wyoming Posts 720

This process must just be so heartbreaking for you. God bless you, pal. God bless your sister.

64 yrs old
March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
3 rounds of CHOP unsuccessful.
Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
Autologous bone marrow transplant in November of 2012.
17 radiation treatments for consolidation purposes between Dec. 26 and Jan.17.
100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
One year post transplant check-up: Still fine; NED.
18month post-translant scans, etc. All fine, save a bit of arthritis.
11/14/14: 24 month post transplant check-up–still NED. Scanziety still sucks.
5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
Relapse confirmed/ started every 3 week brentuximab
Allo transplant in Feb 2016.
100 day post transplant scans in June 2016 fine.

Sib we are going through the same thing here. I’ve been searching for a better lung cancer death timeline. Jody

May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
December 2011 CT scan shows all clear.
April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
October didn’t work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, I�m going for door #2 and will continue to live well and enjoy myself until I don�t. I�ll keep you posted. Live it up everyone!

7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldn�t but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!

I’ve taken a couple of nasty falls this last week. (first of mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!

There is another node swelling on the other side of my neck. Still small.

April51’s (Jody) daughter posted that her Mother’s journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!

Senior User Join Date Feb 2013 Posts 291

dear sibling maybe its yours sisters age and young heart that keeps her alive. i havent read the timeline (out of fear ) and i cant imagine what she is feeling these moments. do you think she can hear you if you whisper something? i suppose it can relief her in some way

Moderator Top User Join Date May 2011 Location Illinois Posts 717

Sorry you are going through this (yet again). She sure is lucky to have you in her corner.





Just a quick word about the Brain Hospice timeline – Brain Tumors

#brain hospice

#

Thread: Just a quick word about the Brain Hospice timeline

Just a quick word about the Brain Hospice timeline

So, I’ve recommended the brainhospice dot com symptom timeline as a reference point to others in the past. I’m not finding it very accurate as we wind down.

At this time it is about six weeks since my sister fulfilled the timeline’s descriptors for 2 to 5 days left, and for roughly two weeks she’s fulfilled the descriptors for just hours .

I knew the top of that timeline was kind of iffy but now I’m finding the bottom is too.

Thank you all for your good thoughts and kind wishes. I send ’em back atcha.

Top User Join Date Jan 2013 Location Central Wyoming Posts 720

This process must just be so heartbreaking for you. God bless you, pal. God bless your sister.

64 yrs old
March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
3 rounds of CHOP unsuccessful.
Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
Autologous bone marrow transplant in November of 2012.
17 radiation treatments for consolidation purposes between Dec. 26 and Jan.17.
100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
One year post transplant check-up: Still fine; NED.
18month post-translant scans, etc. All fine, save a bit of arthritis.
11/14/14: 24 month post transplant check-up–still NED. Scanziety still sucks.
5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
Relapse confirmed/ started every 3 week brentuximab
Allo transplant in Feb 2016.
100 day post transplant scans in June 2016 fine.

Sib we are going through the same thing here. I’ve been searching for a better lung cancer death timeline. Jody

May The Odds Be Ever In Your Favour. Born 1960. Diagnosed 4/2011 with one tumor, LUL, NSCLC. Tumor size 1.1 inches. Thoracic surgery 6/1/2011. No action taken. Eight weeks of radiation and chemo. Carbo and Taxol. Follow up with four rounds of Carbo and Alimta.
December 2011 CT scan shows all clear.
April 2012 CT scan shows all clear. July 2012 had several x-rays taken at the chiropractor for shoulder pain. Took them to the onc and nothing suspicious noted. See them again in Oct.
October didn’t work out. Pain in the left shoulder continued to worsen and lymph nodes in the supraclavical swelled so I called the onc and they bumped the regular scan up to September 19 and we went for the results on the 24th. The tumor is back and the spread is extensive. Option 1: Try targeting chemos that may work and then on to clinical trials. These would give me about a year or so if the cancer responds. Option 2: Do no treatment and let nature take its course. This will give me six months give or take. As good as I feel right now, I�m going for door #2 and will continue to live well and enjoy myself until I don�t. I�ll keep you posted. Live it up everyone!

7 months into hospice and palliative care. It has been a very good relationship with the organization as a whole with a minor glitch. April 2013 spent the night at hospice facility, PICC line inserted for morphine drip. I said I wouldn�t but, had a hospital bed delivered. Started 10 rounds of palliative radiation to shrink the neck tumor. Busy month for me!

I’ve taken a couple of nasty falls this last week. (first of mid-May) Right on the cancer shoulder. So I have a life alert necklace on me now. I wish I could get my hands on a small scooter!

There is another node swelling on the other side of my neck. Still small.

April51’s (Jody) daughter posted that her Mother’s journey in this world had ended on July 8th 2013.You touched so very many lives. Soar high Jody!

Senior User Join Date Feb 2013 Posts 291

dear sibling maybe its yours sisters age and young heart that keeps her alive. i havent read the timeline (out of fear ) and i cant imagine what she is feeling these moments. do you think she can hear you if you whisper something? i suppose it can relief her in some way

Moderator Top User Join Date May 2011 Location Illinois Posts 717

Sorry you are going through this (yet again). She sure is lucky to have you in her corner.