Scared to post, but I too have GBM V

Luvphotog68
Luvphotog68 Member Posts: 3
in Brain Cancer #1
I was diagnosed with the tumor on 11/15, surgery on 11/17 and home on 11/22. He got 99% of the tumor on my left side. Got the diagnosis about 10 days later and it completely turned my world, my family and friends, and my dreams, upside down. He told me on average survival rate is about 18 months for people that choose not to be radically treated and he had a female patient in his practice that has survived 10 years. I have bee "lurking" here for weeks since I am home from work and it has scared me beyond words. I am off all meds until March 8 where I will get another MRI and be re-evaluated. I am only 42 with twin 14 year old girls and a fabulous husband. I cannot leave them. I have no idea where to turn. I feel terrible burdening my family and friends just about everyday with what I face.

I had radiation/chemo (Temodar 140mg) for 30 days and now I am on "the break" waiting for the next shoe to drop. Is it unrealistic to feel hopeful? Or is it possible to be normal? I need some good news....

Comments

  • KMPonder
    KMPonder Member Posts: 102
    #2
    I am so sorry to hear of
    I am so sorry to hear of your news. Unfortunately, my 45 year-old hubby has gotten the same news this week. He's had germinoma in 1987, healed after treatment. Went 22 years tumor free then was diagnosed in '09 with Anaplastic Astrocytomas (three of them). He was healed of those in October '10 after a year of treatment. Started losing his vision last November and he had two clean PETs, which detected no cancer. After two lumbar punctures with elevated protein and low glucose, and 17 HBOT treatments thinking it was necrosis, he just had a craniotomy last week on the optic chiasm. We got the devastating news this week it's a GBM. A third type of malignant brain tumor in his lifetime. It's surreal to write.

    We have some chemo options, (no more radiation is possible, nor is surgery) but we always remain hopeful he can be healed a third time.

    This is not the news anyone expects to hear, but I urge you to remain completely hopeful, as there are many people living long lives with GBMs. Cherish every day, as we will. We are still trying to recover from the surgery, but today was his best day yet and the sun is shining and warm. We will celebrate life!
  • Rory1987
    Rory1987 Member Posts: 120
    #3
    KMPonder said:

    I am so sorry to hear of
    I am so sorry to hear of your news. Unfortunately, my 45 year-old hubby has gotten the same news this week. He's had germinoma in 1987, healed after treatment. Went 22 years tumor free then was diagnosed in '09 with Anaplastic Astrocytomas (three of them). He was healed of those in October '10 after a year of treatment. Started losing his vision last November and he had two clean PETs, which detected no cancer. After two lumbar punctures with elevated protein and low glucose, and 17 HBOT treatments thinking it was necrosis, he just had a craniotomy last week on the optic chiasm. We got the devastating news this week it's a GBM. A third type of malignant brain tumor in his lifetime. It's surreal to write.

    We have some chemo options, (no more radiation is possible, nor is surgery) but we always remain hopeful he can be healed a third time.

    This is not the news anyone expects to hear, but I urge you to remain completely hopeful, as there are many people living long lives with GBMs. Cherish every day, as we will. We are still trying to recover from the surgery, but today was his best day yet and the sun is shining and warm. We will celebrate life!

    Too many rads?
    How many rads did your husband receive when he had radiation 20 years ago how come his doctor wont give him radiation anymore? I've read one brain cancer survivor story that this guy had whole brain radiation when he was just 11 years old (he's now 50+ years old) and he had even more gamma knife treatments as an adult.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #4
    possibly helpful website.....
    Hi, Luvphoto68.

    I am so sorry to read about what you are going through. My heart breaks when I read about the situations that people are facing.

    My son was diagnosed in May of 2009 with an anaplastic oligodendroglima. We were not given a very good prognosis. Someone on this website (csn) posted a link and it really helped me a lot. It's not about the same kind of cancer that my son is battling, but I'm always encouraged when anyone is beating any form of cancer. Here's the link: http://livingwithbraincancer.com/default.aspx

    I hope that this man's victory with GBM IV will bring you a measure of hope. I believe that there are people who are beating cancer and living good lives. Please be sure you visit the link to his earlier website and to the other sites for more survivor stories.

    Please keep us updated here on this site. I will be thinking about you and praying for you and your family.

    Blessings, peace, and healing to you,
    Cindy in Salem, OR
  • KMPonder
    KMPonder Member Posts: 102
    #5
    Rory1987 said:

    Too many rads?
    How many rads did your husband receive when he had radiation 20 years ago how come his doctor wont give him radiation anymore? I've read one brain cancer survivor story that this guy had whole brain radiation when he was just 11 years old (he's now 50+ years old) and he had even more gamma knife treatments as an adult.

    Hubby had WBR in 1987. He
    Hubby had WBR in 1987. He had more focal radiation in 2009 for his AAs. Duke rad onc says he cannot give him the beneficial dose now with his GBM to benefit him. Gamma knife is not an option. Location of the GBM on the optic chiasm is the big problem. (INSERT SCREAM HERE) :/
  • Luvphotog68
    Luvphotog68 Member Posts: 3
    #6
    cindysuetoyou said:

    possibly helpful website.....
    Hi, Luvphoto68.

    I am so sorry to read about what you are going through. My heart breaks when I read about the situations that people are facing.

    My son was diagnosed in May of 2009 with an anaplastic oligodendroglima. We were not given a very good prognosis. Someone on this website (csn) posted a link and it really helped me a lot. It's not about the same kind of cancer that my son is battling, but I'm always encouraged when anyone is beating any form of cancer. Here's the link: http://livingwithbraincancer.com/default.aspx

    I hope that this man's victory with GBM IV will bring you a measure of hope. I believe that there are people who are beating cancer and living good lives. Please be sure you visit the link to his earlier website and to the other sites for more survivor stories.

    Please keep us updated here on this site. I will be thinking about you and praying for you and your family.

    Blessings, peace, and healing to you,
    Cindy in Salem, OR

    Thank you...
    I appreciate the encouragement and send all my love and prayers to you and your family.
  • Roland1957
    Roland1957 Member Posts: 4
    #7
    Rory1987 said:

    Too many rads?
    How many rads did your husband receive when he had radiation 20 years ago how come his doctor wont give him radiation anymore? I've read one brain cancer survivor story that this guy had whole brain radiation when he was just 11 years old (he's now 50+ years old) and he had even more gamma knife treatments as an adult.

    too many rads?
    I'53 year old 5 year survivor of a glioblstomor stage 4 I went through 6 weeks of radiation right after the resection where 90% was removed 2.5 years later it was active again and
    went through a single treatment of the gamma knife again the tumor started to grow about a year later I asked to receive gamma knife surgery was told I had to much radiation my reply was so what do I have to loose? They agreed and gave me 5 days of treatment in a row low dose so in my opinion you have a say in what you receive.
  • Rory1987
    Rory1987 Member Posts: 120
    #8
    KMPonder said:

    Hubby had WBR in 1987. He
    Hubby had WBR in 1987. He had more focal radiation in 2009 for his AAs. Duke rad onc says he cannot give him the beneficial dose now with his GBM to benefit him. Gamma knife is not an option. Location of the GBM on the optic chiasm is the big problem. (INSERT SCREAM HERE) :/

    If your hubby received less
    If your hubby received less than 40gy of WBR then I guess he is still safe to have radiation and maybe ask the doctor to give him fractionated GKS.
  • KMPonder
    KMPonder Member Posts: 102
    #9
    Roland1957 said:

    too many rads?
    I'53 year old 5 year survivor of a glioblstomor stage 4 I went through 6 weeks of radiation right after the resection where 90% was removed 2.5 years later it was active again and
    went through a single treatment of the gamma knife again the tumor started to grow about a year later I asked to receive gamma knife surgery was told I had to much radiation my reply was so what do I have to loose? They agreed and gave me 5 days of treatment in a row low dose so in my opinion you have a say in what you receive.

    Well, this would be
    Well, this would be radiation for the 3rd time for my husband, and the Rad Onc at Duke's brain tumor center said he couldn't give the proper dose for it to be beneficial this third round of brain cancer. I do think what makes my husband's situation very different from most, is that we KNOW the WBR he had in 1987 caused his AA tumors of '09 and the GBM of '11. So while radiation does have its benefits, it also has proven to create new long-term issues as well. Duke is seeing more and more of radiation-induced tumors many years after treatment for initial tumors. What can you do, though?

    I suspect the Rad Onc doesn't want to be liable for "damage" if he radiated again. My husband also is doing remarkably well cognitively, and the nature of this GBM tumor on the optic chiasm has not been seen by Duke in any adult patient. We are dealing with a beautiful and rare bird (my hubby, not the tumor). I have to trust these amazing doctors have his best interest at heart. Honestly, his blindness has posed more challenges than the GBM at this point.

    I wish you all every success.

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