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Thread: Want info on end stage of GBM IV

  1. #1
    Experienced User DeborahR's Avatar
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    Want info on end stage of GBM IV

    My brother was diagnosed with a GBM IV tumor on 1/27/11. Unfortunately, it was inoperable and has not responded to treatments. We were told yesterday that he has less than a month to live. I have an idea of what to expect, but want more info. I sure would appreciate hearing from anyone who has been through this. What can I expect as the end gets near?

    You can get more info at the following link:
    http://www.cancerforums.net/threads/...her-has-GBM-IV

    Thank you very much!
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

  2. #2
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    This is a helpful link but remember that each person is different and this is pretty generalized. http://www.brainhospice.com/SymptomTimeline.html

  3. #3
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    Hi Deborah. I'm so sorry to hear about your brothers situation. Two weeks ago tomorrow, my uncle died of a GBM 4. He lived out his last month and a half in a wonderful hospice facility because 2 weeks before Christmas he had a grand mal seizure and could not recover enough to walk. Most of the time he was in Hospice, he was in a lot of pain and very agitated. Amazingly, the pain and agitation subsided around 2 weeks before he died. He was very calm. Two weeks prior, he stopped all food intake but continued to drink a lot. Was still talking, very calm, no agitation. Then about 4 days before he died, he stopped drinking. Every sip of liquid was making him choke, still speaking but very little and it was a very light whisper, he was very weak. The day before he died, he seemed to develop this god awful cough, very wet cough and he was no longer speaking but was aware of everyone and would use hand signals to let my aunt know he was ok. The nurse put a patch behind his ear to help with the wet cough. My aunt got a call the next morning, to gather the family. When we got there, he was unconscious and breathing very short breaths and very fast. He wasn't rattling because of the patch behind his ear, that was so helpful. He took his last breath at 1 pm that afternoon.

  4. #4
    Experienced User DeborahR's Avatar
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    Thank you so much for your replies. I am still praying for a mircle, but I need to be prepared if God chooses to heal him in Heaven. God bless you.
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

  5. #5
    Experienced User DeborahR's Avatar
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    Lindsay, this link is very helpful. According to it, my brother has 1 -2 weeks left.
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

  6. #6
    Experienced User DeborahR's Avatar
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    Just wanted to give you a quick update on my brother. We went to visit him today. He is still at the hospice. He sleeps much of the time. Some days are better than others, of course. He was having a pretty good day today. He woke up throughout the afternoon, and I was able to talk to him some. It was wonderful, though he cannot respond. He is having to take pain meds, Ativan to help him with agitation, a steroid for the brain swelling, and something for seizures. On 2/22 the doctor gave him 2 weeks to a month to live, but he is still with us, thank God. We appreciate the prayers on his behalf!!
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

  7. #7
    Deborah, I am so glad to see your post. I have been thinking of you and your family and praying for your brother. Defying the odds and still being able to see your loved ones is a blessing in it's self. My husband is still be a warrior and moving on to the next step of this journey. He is weak but he is stable enough to start the Avastin today. I am scared and excited at the same time. Wish us luck!!! Hugs to you and your family.

  8. #8
    Administrator Top User brainman's Avatar
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    Oh Deborah, some how I missed this thread until now . I am so sorry to hear that your bother continues to get worse. I am glad that you are able to have quality time with him
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  9. #9
    Experienced User DeborahR's Avatar
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    Bless your heart, Love. I can understand that feeling of fear and excitement at the same time. I pray that your husband will remain stable. This is such a hard thing to see our loved ones go through. I keep finding myself, as I'm planning things, wondering if my brother will still be here by then. It's also hard to not know how much he understands, since he can't respond. I can only imagine what he must be going through. Can your husband speak and express himself? If he can, what a blessing. My thoughts and prayers are with you. Hugs back to you!!
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

  10. #10
    Experienced User DeborahR's Avatar
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    Thank you, Jim. Yes, it is a blessing to have time with him. It is a special blessing when he opens his eyes and looks at you. I thank God for those special moments.
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

  11. #11
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    Im not a great writer and I hope this isnt too hard to follow but I feel obliged to help fellow people out. I lost my Father last Tuesday to GBM IV. The signs leading up to the final days was not a fun experience at all and I wouldn't wish it upon my worst enemy. But it is valuable information and it needs to be shared. Dad was diagnosed in Sept 2009(saw spots in both eyes, saw a doc, got a scan, found the brain tumor immediately on right frontal lobe), tried every imaginable medication and clinical trial(Novocure head device), 2 brain surgeries, roughly 12 months of chemo and radiation, and all these things really did was buy him more time. We even had doctors install an Ommaya Port in the top of Dads head that would drip chemotherapy directly onto the tumor site. Another thing we tried was to have some sort of box installed on his chest that would allow liquid medications to be injected directly into his bloodstream for instant relief. We rarely used it though. It became very helpful in administering morphine later down the road though. Oncologists said they caught the tumor rather late in its development and was still capable of multiplying very fast. It was an 18 month adventure from start to finish.

    The final month was by far the hardest. He had become bedridden the final 3 months and needed considerable assistance in every single thing he did. The first significant thing that arose in our situation letting us know the end was near, was that it took less and less food to make Dad "feel full". The final week of his life, he was essentially eating probably 80% of the amount of food he had eaten the day before. Now imagine that over the span of one week and you go from, say, an entire hamburger to just one or two bites. I fed him his last meal as a matter of fact; less than 1/4 of a chopped BBQ beef sandwich. The night before I think he had half of a banana. Anyways, he did have all of the other normal signs that suggest the end could be soon; dark urine(almost tea colored), sleeping roughly 20 hours a day, constant headaches, moans of pain throughout the body, and a general disconnect of brain-to-body functions. He was able to feed himself with the one good half of his body(left side was totally useless. couldn't move left arm or leg) up until a week and a half before death. Another significant symptom was his sudden loss of the ability to focus with his eyes on his surrounding. He just had a blank stare on his face looking up at the ceiling for the last 2-3 days of his life. But some of that had to do with the amount of morphine he was being given(1mL per hour). Morphine can cause patients to keep their eyes open unknowingly and not be able to blink. So his eyes were brutally bloodshot the final 2 days. A few other signs began popping up; his knees became very cold suggesting blood was beginning to stop circulating in his legs. And unavoidably, the worst symptom to witness of all, chest gurgling and erratic and shallow breathing. There were probably 20 instances when we thought he had stopped breathing completely, only for him to inhale again. His breaths would sometimes be more than 15 seconds apart, mixed with the chest gurgling noise. It was sad to see, and I wont ever forget it, but thats just part of life. I fear this post may upset you, but I feel that since I have just experienced what you are experiencing right now, I want you to know when the end is near because it is very important. My mother wasn't as prepared for the funeral as she would have liked to be, so this past week has been utter chaos to say the least for my mother especially.

    {Link deleted per Forum Policy}
    Last edited by brainman; 03-31-2011 at 01:58 AM. Reason: Delete link

  12. #12
    Experienced User DeborahR's Avatar
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    Thank you for your reply, Brad. Unfortunately, my brother passed away last night. We will be attending his funeral tomorrow and buries and memorial service on Saturday. He lived in Memphis, but is being buried in our home down, so they are having services in both towns. I last saw him on Sunday. He would kinda look at you, but couldn't respond. I'm not sure how much he understood. I know what you mean by that blank stare. He had that, but then it improved, but it kind of came back near the end. When we saw him Sunday, I heard something a little different in his breathing. There seemed to be more phlegm that he was having trouble clearing. I'm just glad to know that he is at peace now. However, I'm very concerned about my mother. She has really taken this hard. I'm sorry for your loss. May God be with you and your family.
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

  13. #13
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    Deborah, I am so sorry about the loss of your brother. It is so hard to lose a sibling, you just don't expect it to happen at this stage in life. My prayers are with you and your family as you go through the time time of loss. Take care of yourself and come back to visit us whenever you feel the need. God Bless.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  14. #14
    Deborah, It breaks my heart to read the post about the passing of your brother and I am so sorry for your loss. I pray for you and your family every night and I was so hoping that a rally would occur and you all would have more time with him. Please give your Mom a HUGE HUG from all of your GBM friends in VA. Saying good bye is so hard and if you need us, we are here for you!!!!!

  15. #15
    Administrator Top User brainman's Avatar
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    Deborah, my heart and prayers go out to you . {{{{Deborah}}}}
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  16. #16
    Experienced User DeborahR's Avatar
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    Thank you all for your kind words. I appreciate them so much. This site and the people on it have been so helpful through my brother's illness. I have learned so much from reading your posts. I so appreciate the encouraging words and the information that you have provided. I tend to fear most when I don't have information. Thank you for making this terrible cancer a little less scary for me. I pray for each of you and for your loved ones. May God hold you in His hands always. I will try to check in from time to time. Thank you again for being so kind of me during this ordeal. God bless you!
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

  17. #17
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    Deborah,

    Prayers and condolences to you and your family. Your posts have really helped me and my family's struggle this past year. It is such a dual personality journey. One plays the cheerleader optimist, whilst the other is the realistic pessimist wanting to know specifics and timelines. That in turn causes guilt. What a ride.

    I pray your mother will be able to come to terms in her own time and it sounds like she has a good family to surround her. God Bless.

  18. #18
    Experienced User DeborahR's Avatar
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    Thanks, Kbee. Momma is doing good. She has good days and bad days, but is hanging on to her faith in God and that gets her through.
    Deborah

    Brother - diagnosed with inoperable GBM IV 1/27/11 Passed away 3/30/11 (62 days after diagnosis)
    Mom - colon cancer survivor
    Dad - prostate & colon cancer survivor

 
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