Glioblastoma Multiforme Grade 4 question

Deliriou5
Deliriou5 Member Posts: 1
edited March 2014 in Brain Cancer #1
Hello. Late last September, my father was DX'd with Glioblastoma Multiforme Grade 4. In October he had the Tumor removed, and treatment seemed to be going great till about a month ago. They said that the swelling was going up and not sideways, but it was found that the tumor came back. They advised my father that if he would have it removed again, it would paralize his left side of his body. He did not want to do that. He simply did not want to live that way.

So here is my question. Does anybody here know what I can expect to see. in the last few weeks, his left side (Tumor is on the right side) has started loosing its strength. His hand has tremors, his eye is going lazy, cant hardly walk and is now using a walker and a wheel chair to get around. Sad to say he is only 54, but that is beside the point.

Does anyone know what we (my family) can expect. The doctors basically gave him 1 week to 3 months to live. That was 3 weeks ago. Considering the fact the tumor is on the right side, does anyone know what organs will go first? Has anyone had experience with the progress of such a tumor, compared to where my father is now? For example, when they start showing the kind of symptoms my dad has now, does anyone know how much longer it might be? Any info on the progress of these things is greatly appricated.

Thank you.

Comments

  • ruslan
    ruslan Member Posts: 1
    #2
    Deliriou5
    My wife was diagnosed with GBM stage 4 in Nov 2002. She had surgery and radiation. In Feb 2003 she was started on Temodar. She was doing well until Aug 2003 when a scan showed a possible reoccurence. We went to Johns Hopkins for a second opinion. A further scan showed no chnge and she was put back on temodar. She has remained stable tumor wise. Unfortunately this March she had a stroke. The tumor had weakened her left side and the stroke has weakened her right. But the temodar was a God send. She was treated at Sloan Kettering in New York. We now live in Florida and she will be going to Mayo Clinic. My wife was 54 when diagnosed.
  • mschaben
    mschaben Member Posts: 87
    #3
    Hi, I am so sorry you are having to see your father like this. I just lost my mother to the grade 4. She was diagnosed in last June and passed away this April. She made it nine months from the time she was diagnosed. She went through suregery right away and did very well for several months. She did all the radiation and chemo. She never gave up she was very positive. In January she went into acoma and we found out the tumor was back even bigger and she had massive brain swelling. They gave her some meds and brought her out of the acoma. She then went home and had two fairly good months at home. Then She got bad again and they gave her two weeks to live. She was put in the hospital and then into longterm care. She lived three weeks. It was very hard to watch her slowly die. It is very emotionally and physically draining for everyone. My mother was only sixty. I am twenty-eight and have two children that miss her very much. Her tumor was on the right side also. Toward the end she lost use in her left side, she could no longer stand, she was kind of confused. Also toward the end of the dying process she started to be kind of mean and hurtful to us. She knew she was dying and that was her way of letting go of everyone. We told her it was okay to go and that made her feel better. It is such a hard time. If you have any other questions I can try to answer them for you. You can email me at kountryliving26@yahoo.com
    Mary
  • JennyLynn
    JennyLynn Member Posts: 1
    #4
    Here is what happened and anyone that can answer please do. On june 29,2004 My husband went to work from there something happened and his boss decide that he need to go to the hospital. It was a small hospital. For some reason I still don't know why the Doctor decided to run a cat scan. When the results came back it show that my husband was bleeding on his brain. So he was sent to a bigger hospital. There they did an MRI. It showed the bleeding and that he had, had another bleeder that had stopped. They had to put my husband under because he was really out of it. The next morning they did surgery and they took 80% of the tumor but could tell me very much. They thought that he has a grade 1 or 2. They would have to wait for path. They didn't know if he would wake up or how much damage was done. They slowly let him wake up after a couple of days. On July 4, 2004 I found out it was a grade 4. They told me that he would have a year to 1 1/2 to live. We did the radiation and he is taking Temozolomide. His oncologist said that they only keep people on it for a year. Ok so what happens next? Will the tumor start growing again right away? Is there a chance it won't grow what. The not knowing is the hardest. He is doing fine lost alot of his ability to say thing the right way. He know what he want to say but can't get the words to come out right all the time. He seems to have lost the ability to show emotions. He doesn't seem to cry or is able to say how he feels. He didn't get that chance. It took him a few month to remember everyone. His last MRI show no new growth or swelling. We have been married 22 years.Have three children,one grand child that is four,and he is only 41 years young. It scary to not know what is going on. He is a brave man and very loved by all of us. Anyone that can help feel free to email me. I need to know something, anything. jennywoollums@iowatelecom.net
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #5
    JennyLynn said:

    Here is what happened and anyone that can answer please do. On june 29,2004 My husband went to work from there something happened and his boss decide that he need to go to the hospital. It was a small hospital. For some reason I still don't know why the Doctor decided to run a cat scan. When the results came back it show that my husband was bleeding on his brain. So he was sent to a bigger hospital. There they did an MRI. It showed the bleeding and that he had, had another bleeder that had stopped. They had to put my husband under because he was really out of it. The next morning they did surgery and they took 80% of the tumor but could tell me very much. They thought that he has a grade 1 or 2. They would have to wait for path. They didn't know if he would wake up or how much damage was done. They slowly let him wake up after a couple of days. On July 4, 2004 I found out it was a grade 4. They told me that he would have a year to 1 1/2 to live. We did the radiation and he is taking Temozolomide. His oncologist said that they only keep people on it for a year. Ok so what happens next? Will the tumor start growing again right away? Is there a chance it won't grow what. The not knowing is the hardest. He is doing fine lost alot of his ability to say thing the right way. He know what he want to say but can't get the words to come out right all the time. He seems to have lost the ability to show emotions. He doesn't seem to cry or is able to say how he feels. He didn't get that chance. It took him a few month to remember everyone. His last MRI show no new growth or swelling. We have been married 22 years.Have three children,one grand child that is four,and he is only 41 years young. It scary to not know what is going on. He is a brave man and very loved by all of us. Anyone that can help feel free to email me. I need to know something, anything. jennywoollums@iowatelecom.net

    Hello,

    You may want to consider contacting the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day to help you with your questions. They can be reached at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of the page.

    Take care and be well,

    Dana
    CSN Dana
  • jim1328
    jim1328 Member Posts: 1
    #6
    JennyLynn said:

    Here is what happened and anyone that can answer please do. On june 29,2004 My husband went to work from there something happened and his boss decide that he need to go to the hospital. It was a small hospital. For some reason I still don't know why the Doctor decided to run a cat scan. When the results came back it show that my husband was bleeding on his brain. So he was sent to a bigger hospital. There they did an MRI. It showed the bleeding and that he had, had another bleeder that had stopped. They had to put my husband under because he was really out of it. The next morning they did surgery and they took 80% of the tumor but could tell me very much. They thought that he has a grade 1 or 2. They would have to wait for path. They didn't know if he would wake up or how much damage was done. They slowly let him wake up after a couple of days. On July 4, 2004 I found out it was a grade 4. They told me that he would have a year to 1 1/2 to live. We did the radiation and he is taking Temozolomide. His oncologist said that they only keep people on it for a year. Ok so what happens next? Will the tumor start growing again right away? Is there a chance it won't grow what. The not knowing is the hardest. He is doing fine lost alot of his ability to say thing the right way. He know what he want to say but can't get the words to come out right all the time. He seems to have lost the ability to show emotions. He doesn't seem to cry or is able to say how he feels. He didn't get that chance. It took him a few month to remember everyone. His last MRI show no new growth or swelling. We have been married 22 years.Have three children,one grand child that is four,and he is only 41 years young. It scary to not know what is going on. He is a brave man and very loved by all of us. Anyone that can help feel free to email me. I need to know something, anything. jennywoollums@iowatelecom.net

    Dear jennylynnn, boy if your husband doesnt sound like me. I have recentlty been dx with a GBM 4/05 had surgery 4/4/05.followed by temodar tx and 33 days radiation.(Endinding Monday). My Karnofsky Performance Scale is 90, which is a good measurement. I am constantly reminded of the statictics of this dreaded disease but I am confident in the course of treatment and take one day at a time .I wish you & your husband well and to live one day at a time. regards... jim1328
  • suzi191
    suzi191 Member Posts: 4
    #7
    Your case sounds alot like mine....my mom has gbm 4. She was diagnosed 4-05. Had surgery, they couldnt get it all..had radiation. But she only got worse suring it. She had a seizure 2 weeks ago and had to go to the hospital. It left her with more deficits. And she has sone down hill rapidly since. She cant feed herself, walk, talk, or even hold her head up. It slumps to the right all the time. She seems unable to move i much. She has good days now and then when it seems like she is more aware. But mostly she isnt doing well at all. Did you find the answers you had about whats to come. And how long myabe left judging by the symptoms...? I have hunted thatinfo too. But havent found answers yet. I hate to see her suffer so. And it is so hard to watch her fade away.........

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