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Thread: Glioblastoma research and help fighting this disease

  1. #1
    Newbie New User
    Join Date
    Aug 2017

    Glioblastoma research and help fighting this disease

    I know I am a little late posting on this, but I just wanted to get this out. My father was diagnosed with Glioblastoma Stage IV back in late May. They removed the majority of the tumor and he had to go through rehabilitation for a couple of weeks afterwards to get his strength back. He did well and was able to come home for a little while before he started his Chemo

    So far my dad has been doing well with his chemo, which includes theodar along with radadiation therapy 5 days a week. A recent trip to the doctor who did his surgery for a second MRI showed no new growth, but it is still early.

    I myself have been wanting to work to do something to help, but I have just really not known what to do for the most part as I am new to all of this. I was hoping that Senator John McCain could use his prominent position to bring more awareness of this often overlooked disease. I think so far it has in some ways, especially with his infamous vote against repealing the Affordable Care Act. I have also given money to some organizations such as the Glioblastoma Foundation and Defeat GBM
    so far but I would like to do more. I have written to Senator McCain myself but I have yet to hear back (I don't live in Arizona so that may be why). Any help would be appreciated.
    Last edited by ChemoMan; 08-10-2017 at 12:40 AM. Reason: Links removed as per policy

  2. #2
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Blog Entries
    Sorry but your links were removed as per our link policy. Once you have established credentials as a regular member you may be able to put links up.

    Please bear in mind that there is a big world beyond the shores of the USA and that you are speaking to a worldwide audience.

    Good luck for your Dad
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  3. #3
    Super Moderator Top User
    Join Date
    Dec 2011
    Hi bjoh, welcome. I'm sorry to hear of your father's GBM. My sister survived 2.5 years with GBM.

    I'm glad you found this forum, although sorry that you had reason to find us.

    In terms of donating money, the American Brain Tumor Association is one charity that many people here have donated to.

    I'm sure the senator has received more well-wishes than he can answer, which is a good thing.

    For most families with GBM, the most stressful times are 1. the initial diagnosis/crisis period 2. the initial treatment period with radiation/temodar (where your father is now) and 3. the periodic MRIs after that.

    Do you live near your father, or no?
    Last edited by GBMsibling; 08-11-2017 at 02:40 AM.

  4. #4
    Newbie New User
    Join Date
    Aug 2017
    Hi, yes I live near my dad.

  5. #5
    Super Moderator Top User
    Join Date
    Dec 2011
    Oh, that's good. Well, you must be finding a lot of ways you can do to help, then; I wouldn't worry too much about that!


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