Clinical Trail for Brain Cancer

Praying4All
Praying4All Member Posts: 8
in Brain Cancer #1
I have a daughter who was recently diagnosed with a brain tumor. She has had surgery, radiation and chemo. I was wondering if anyone has any advice for clinical trails that has helped them. The doctor make things seem so gloom, but I see that their are surviors out there and there is HOPE.

Comments

  • connsteele
    connsteele Member Posts: 232
    #2
    I can't help you with
    I can't help you with finding a clinical trial, but I do want to say something about doctors, and how some can be so postive, while others not. Our son (age 34, dx 4-13-11 with inoperable anaplastic astrocytoma 3) was first diagnosed in Virginia, where he was living at the time. He had his surgical biopsy, radiation, and first round of Temodar there. The docs there were really pessimistic, said that treatment won't make "it" go away, just slow things down.
    After his break in chemo, we had to move him back home with us in Ohio as he has some deficits that prevent him from being totally independent. We also got new doctors at Ohio State's The James Cancer Center. His doctor is Dr. Caveleire. He is so much more positive and even says, "I don't make projections because everyone is different."

    Just wanted to let you know that there is always hope and that people beat the odds all the time.
  • palmyrafan
    palmyrafan Member Posts: 396
    #3
    You know my
    favorite word: HOPE. I haven't had any experience with clinical trials; they will not work on my brain tumors.

    However, I am a BIG proponent on HOPE. It is what keeps us sane. Don't lose it!

    Hugs,
    Teresa
  • Praying4All
    Praying4All Member Posts: 8
    #4
    connsteele said:

    I can't help you with
    I can't help you with finding a clinical trial, but I do want to say something about doctors, and how some can be so postive, while others not. Our son (age 34, dx 4-13-11 with inoperable anaplastic astrocytoma 3) was first diagnosed in Virginia, where he was living at the time. He had his surgical biopsy, radiation, and first round of Temodar there. The docs there were really pessimistic, said that treatment won't make "it" go away, just slow things down.
    After his break in chemo, we had to move him back home with us in Ohio as he has some deficits that prevent him from being totally independent. We also got new doctors at Ohio State's The James Cancer Center. His doctor is Dr. Caveleire. He is so much more positive and even says, "I don't make projections because everyone is different."

    Just wanted to let you know that there is always hope and that people beat the odds all the time.

    Thanks
    Thanks for responding. I love the positivity, I sure need it.
  • Praying4All
    Praying4All Member Posts: 8
    #5
    palmyrafan said:

    You know my
    favorite word: HOPE. I haven't had any experience with clinical trials; they will not work on my brain tumors.

    However, I am a BIG proponent on HOPE. It is what keeps us sane. Don't lose it!

    Hugs,
    Teresa

    Hope
    Thanks for responding. If you don't mind me asking, when were you diagnosed?
  • KellyAK2011
    KellyAK2011 Member Posts: 20
    #6
    Praying4All said:

    Hope
    Thanks for responding. If you don't mind me asking, when were you diagnosed?

    Tumor type and grade?
    You didn't say what your daughter's tumor type and grade was. If you provide a little more detail perhaps we can be a better resource for you.

    Kelly
  • Praying4All
    Praying4All Member Posts: 8
    #7
    KellyAK2011 said:

    Tumor type and grade?
    You didn't say what your daughter's tumor type and grade was. If you provide a little more detail perhaps we can be a better resource for you.

    Kelly

    She has a brain stem glioma
    She has a brain stem glioma I am uncertain of the grade
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #8
    KellyAK2011 said:

    Tumor type and grade?
    You didn't say what your daughter's tumor type and grade was. If you provide a little more detail perhaps we can be a better resource for you.

    Kelly

    are in Alaska?
    Hi:
    Looking for young adults with brain tumors to meet to help provide emotional support to my daughter who is 18 years old. Are you located near Anchorage?
  • Praying4All
    Praying4All Member Posts: 8
    #9
    alutiiqmom said:

    are in Alaska?
    Hi:
    Looking for young adults with brain tumors to meet to help provide emotional support to my daughter who is 18 years old. Are you located near Anchorage?

    Hi
    Hi no we are not in Alaska
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #10
    Praying4All said:

    Hi
    Hi no we are not in Alaska

    kellyinAK?
    Good Morning all:
    Sorry I was directing the message to Kelly. I have had a hard time finding other cancer patients for my daughter to connect with. I think she would feel better if she could meet some other people with similar struggles. Wishing you all the best. God Bless.
    Edna

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