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DIPG

My daughter was diagnosed with a DIPG 1-26-2012 at the age of 21. I am just looking for people that may be going through the same thing...We were told that is very rare for someone of her age.

FearlessMom

Comments

  • princesspurple
    princesspurple Member Posts: 6
    I was diagnosed at 25 with a
    I was diagnosed at 25 with a pontine glioma with some diffuse enlargement. This was back in 2008. It is indeed rare at this age. From chemo and radiation to trials to side effects, have been through a lot with this over the past nearly 4 years (hit this mark next week), and would be very happy to share my experience. There are also some decent resources specifically for young adults that she might find helpful, I know I have.
    All the best to you both.
  • LeslieLand
    LeslieLand Member Posts: 49
    My husband was diagnosed in

    My husband was diagnosed in Jan 2011 at the age of 33.

    How is your daughter doing?

  • GULLFRIENDLY
    GULLFRIENDLY Member Posts: 2
    dipg
    Hello - anyone with dipg still check this site... It's been a while since these posts.

    My daughter is 19 and just finished 6 weeks of radiation. If anyone would care to share your experiences please let me know.
    Thanks all
  • gorawforsophie
    gorawforsophie Member Posts: 1

    dipg
    Hello - anyone with dipg still check this site... It's been a while since these posts.

    My daughter is 19 and just finished 6 weeks of radiation. If anyone would care to share your experiences please let me know.
    Thanks all

    gullfriendly

    My daughter is 3.5 years old and we just finished radiation. she was DX oct 27th 2014. Please look into cannabis oil for your daughter! you can email me any time [email protected] we're in a long fight!

  • HELPCC
    HELPCC Member Posts: 1

    gullfriendly

    My daughter is 3.5 years old and we just finished radiation. she was DX oct 27th 2014. Please look into cannabis oil for your daughter! you can email me any time [email protected] we're in a long fight!

    gorawforsophie

    Hi there.  Hope your daughter is doing well.  Has she had her MRI done yet to check her progress after radiation?  Praying its great news!

     

  • Kjam3610
    Kjam3610 Member Posts: 7
    HELPCC said:

    gorawforsophie

    Hi there.  Hope your daughter is doing well.  Has she had her MRI done yet to check her progress after radiation?  Praying its great news!

     

    Hello, I responded to the

    Hello, I responded to the above post "Adult DIPG". My son, age 22, was diagnosed on June 2nd. He is in the process of getting his 6 weeks of radiation at the Cleveland Clinic. I am looking for anyone who has been treated with Avastin. We have been told that is our next possible step. 

  • JoySosa
    JoySosa Member Posts: 2

    gullfriendly

    My daughter is 3.5 years old and we just finished radiation. she was DX oct 27th 2014. Please look into cannabis oil for your daughter! you can email me any time [email protected] we're in a long fight!

    Pontine glioma

    How was your daughter? My daughter been recently diagnosed with dipg, she is 5y.o. i dont know what to do.. please help me..thanks

  • Athena568
    Athena568 Member Posts: 6
    I was just recently diagnosed

    I was just recently diagnosed at 26. How is your daughter doing?