GBM IV astrocytoma PLEASE HELP

momica
momica Member Posts: 1
edited March 2014 in Brain Cancer #1
My husband (41) has just been diagnosed with GBM astrocytoma (IV) and we are still in shock and horror. The prognosis is not good. It's 2" diameter. One tumor was removed, one is inoperable. We're beginning a case study at U Penn and we have 4 children all under eight years old. 8, 5, 2, 3 months. We need to talk with someone in a similar situation. I need to keep his hopes up and his attitude positive. We are devastated and are lost.

Comments

  • TAremote
    TAremote Member Posts: 56 Member
    #2
    Hello, I'm a 53 yr old male and was diagnosed in July with a grade 4 Glio Blastoma multiform. They operated on Aug 21st and removed 80% of the tumor. Since thenI have completed radiation and chemo. And have now started my second phase of chemo (temador), 5 days on chemo and 28 days off. Through the rad and chemo I have not had any side effects to speak of. I have lost some vision in my left eye along with some memory issues. They had to increase my steroids due to some swelling that was causing some headaches and dizziness. I know how you must feel. The shock of one day living your lifes, and then wham, someone tells you there is a tumor in your brain. It can be overwhelming to say the least. My wife and I sat in the car and cried after hearing what I had. But from that point on, crying and fear have to take a back seat to living. I look at this thing as a blessing. And I feel that I have touched many people with my story. God has allowed me to be put in front of poeple who need help. Not mnay people get the chance I have, to make a difference. Before I was just another person,nothing special. Now I have something that causes people to listen, andif I can provide a small sliver of hope to someone, or help them see that we must focus on the journey, and not the destination.
    When they first told me, they said I had 4 months to live without treatment, adn 12 months with treatment.. Well, I'm past that 4 month deal. The numbers the Dr.s give you are averages, don't focus on the time frames. Focus on LIVING....

    If I can help you or your husband, please let me know..
    God Bless.
    Tom
  • JuleG
    JuleG Member Posts: 3
    #3
    TAremote said:

    Hello, I'm a 53 yr old male and was diagnosed in July with a grade 4 Glio Blastoma multiform. They operated on Aug 21st and removed 80% of the tumor. Since thenI have completed radiation and chemo. And have now started my second phase of chemo (temador), 5 days on chemo and 28 days off. Through the rad and chemo I have not had any side effects to speak of. I have lost some vision in my left eye along with some memory issues. They had to increase my steroids due to some swelling that was causing some headaches and dizziness. I know how you must feel. The shock of one day living your lifes, and then wham, someone tells you there is a tumor in your brain. It can be overwhelming to say the least. My wife and I sat in the car and cried after hearing what I had. But from that point on, crying and fear have to take a back seat to living. I look at this thing as a blessing. And I feel that I have touched many people with my story. God has allowed me to be put in front of poeple who need help. Not mnay people get the chance I have, to make a difference. Before I was just another person,nothing special. Now I have something that causes people to listen, andif I can provide a small sliver of hope to someone, or help them see that we must focus on the journey, and not the destination.
    When they first told me, they said I had 4 months to live without treatment, adn 12 months with treatment.. Well, I'm past that 4 month deal. The numbers the Dr.s give you are averages, don't focus on the time frames. Focus on LIVING....

    If I can help you or your husband, please let me know..
    God Bless.
    Tom

    My dad was just diagnosed last week with GBM IV. Yes, it is quite a shock. Still tough to handle. Tom, you seem to have a great attitude and your comments are truly reassuring. Thanks.

    Momica, I too am looking for better guidance with clinicals. Sloan Kettering has offered us a phase two with Poly-ICLC and and phase I with R115777. At this point we are still searching. Temodor is always there if we need it. Tom, how were the side effects?

    Steven
  • TAremote
    TAremote Member Posts: 56 Member
    #4
    JuleG said:

    My dad was just diagnosed last week with GBM IV. Yes, it is quite a shock. Still tough to handle. Tom, you seem to have a great attitude and your comments are truly reassuring. Thanks.

    Momica, I too am looking for better guidance with clinicals. Sloan Kettering has offered us a phase two with Poly-ICLC and and phase I with R115777. At this point we are still searching. Temodor is always there if we need it. Tom, how were the side effects?

    Steven

    Steven, So far I have completed 4 rounds of Temadar, and all has gone well. Side effects are minimal, with some heartburn and constipation. I have not gotten sick while taking the temadar, but I also take three anti nausea pills during those times. My last MRI on Jan 2, 2004 showed no new growth of the tumor, and I have now completed 4 rounds of temadar. It seems like my treatments are working at the moment. I take steriods to keep the swelling down, since that caused dizziness and headaches when I would stand up. Since increasing the steriods, the headache and dizziness have gone away. Take each day as a gift, and all I ask from my caregiver (Wife, kids) is nothing special, all they that to do is just be there, and understand, as I have to understand what they are going through. I think it is harder on the caregivers, they are always having to wonder, how you feeling, whats going on, etc, etc.....

    Steven, what treatments are the Dr.s telling your Dad? Where is the Tumor located?

    Momica..... Where is your Husbands tumor located? What treatments are they suggesting? Are they looking at Radiation, usually 6 wks, and Chemo?.. I had both at the same time, which I think was the right thing to do. I also had the glio wafers installed during my operation, chemo wafers placed next to the remaining tumor...

    Please let me know how each of you are doing.....

    God Bless
    Tom
    TAremote@aol.com
  • TAremote
    TAremote Member Posts: 56 Member
    #5
    TAremote said:

    Steven, So far I have completed 4 rounds of Temadar, and all has gone well. Side effects are minimal, with some heartburn and constipation. I have not gotten sick while taking the temadar, but I also take three anti nausea pills during those times. My last MRI on Jan 2, 2004 showed no new growth of the tumor, and I have now completed 4 rounds of temadar. It seems like my treatments are working at the moment. I take steriods to keep the swelling down, since that caused dizziness and headaches when I would stand up. Since increasing the steriods, the headache and dizziness have gone away. Take each day as a gift, and all I ask from my caregiver (Wife, kids) is nothing special, all they that to do is just be there, and understand, as I have to understand what they are going through. I think it is harder on the caregivers, they are always having to wonder, how you feeling, whats going on, etc, etc.....

    Steven, what treatments are the Dr.s telling your Dad? Where is the Tumor located?

    Momica..... Where is your Husbands tumor located? What treatments are they suggesting? Are they looking at Radiation, usually 6 wks, and Chemo?.. I had both at the same time, which I think was the right thing to do. I also had the glio wafers installed during my operation, chemo wafers placed next to the remaining tumor...

    Please let me know how each of you are doing.....

    God Bless
    Tom
    TAremote@aol.com

    momica , What is the latest on your husband?? An Astrosytoma is more treatable than a GBM, and has a slower growth rate. What kind of questions do you havedo you have??
    Ley us know how oyu doing.. Also join the chat room where you will be lost of support and guidance...

    God Bless
    Tom
  • Unknown
    Unknown
    #6
    Hello, I am 33 years old. I was diagnosed with a grade III astrocytoma in October of 2001. My tumor was the size of a baseball and pressing hard against my brain stem. I have had 2 surgeries, a maximum dose of radiation, 40 weeks of chemo alternating Temodar and CeeCeeNU, and I will have been taking Tomoxifen for a year in April. After making a mistake with my original neurologist I decided to contact Duke. The Brain Tumor Center at Duke has an entire staff dedicated to brain tumor and I have been very pleased with them. The mato at Duke is "At Duke There Is Hope". You may also want to contact the American Brain Tumor Association for more information.
    Best of luck!
  • mroeders
    mroeders Member Posts: 3
    #7
    I am 31 last march I discovered I had GMB IV Multform. First surgery they took out 95% of tumor. Second surgery was July with MRI machine in the operiting room the did scans while did surgery, they got all they tumor out, and placed in radidion seeds. Now I'm i'm Temodar 5 times a month for a year. I get MRI scans every 2 months.

    GOOD LUCK! I know its scary. I lost use of my right arm and talk funny now, but I'm working again and speech is improving ever day, so is arm.
  • HopeOne
    HopeOne Member Posts: 9
    #8
    TAremote said:

    Hello, I'm a 53 yr old male and was diagnosed in July with a grade 4 Glio Blastoma multiform. They operated on Aug 21st and removed 80% of the tumor. Since thenI have completed radiation and chemo. And have now started my second phase of chemo (temador), 5 days on chemo and 28 days off. Through the rad and chemo I have not had any side effects to speak of. I have lost some vision in my left eye along with some memory issues. They had to increase my steroids due to some swelling that was causing some headaches and dizziness. I know how you must feel. The shock of one day living your lifes, and then wham, someone tells you there is a tumor in your brain. It can be overwhelming to say the least. My wife and I sat in the car and cried after hearing what I had. But from that point on, crying and fear have to take a back seat to living. I look at this thing as a blessing. And I feel that I have touched many people with my story. God has allowed me to be put in front of poeple who need help. Not mnay people get the chance I have, to make a difference. Before I was just another person,nothing special. Now I have something that causes people to listen, andif I can provide a small sliver of hope to someone, or help them see that we must focus on the journey, and not the destination.
    When they first told me, they said I had 4 months to live without treatment, adn 12 months with treatment.. Well, I'm past that 4 month deal. The numbers the Dr.s give you are averages, don't focus on the time frames. Focus on LIVING....

    If I can help you or your husband, please let me know..
    God Bless.
    Tom

    I admire your courage. Your family is a model for others facing this illness. My sister in law was diagnosed with this illness recently and I am trying to find out as much information as I can. Thanks

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