adult medulla blastoma

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  • Mark Pottinger
    Mark Pottinger Member Posts: 2
    #62
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    gary142 said:

    hi
    i am a 27 year old male. was diagnosed with medulloblastoma when i was 20. give me a shout if you fancy a chat or e-mail me at garkennedy@gmail.com

    feedback

    I know this is out of the blue but here in Australia I am finding it hard to get any feedback from Adults with medulla blastoma. My wife this week had a brain tumour removed from her brain and had the diagnostic of medulla blastoma.

     

    She is about to go through Radiation and then chemo and my family is just devastated.

     

    I suppose the unknown or little knowledge here in Australia about adults getting medulla blastoma is the concern for a better word?

     

    Any feedback or experience would be a form of some relieve for my wife Karen?

     

    If you feel you have some educational experience you can share I would be forever grateful.

  • Mark Pottinger
    Mark Pottinger Member Posts: 2
    edited June 2018 #63
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    maguire30 said:

    Medullablastoma??
    Hi Bill. I've just read your comment and think its fantastice you have survived your ordeal. Was you tumor a grade 4 medullablastoma? My brother was diagnosed with this a year ago and is doing good. he went through his chemo and radio which was very sore on him and he is in the middle of a rehabilitation programme now so hope fully he will bre back on his feet after this and has a long and healthy life he is only a baby at 25. What age where u when you were diagnosed. hope you don't mind these questions. An Cara..

    feedback

    Would be keen to hear any long term advise re this aweful brain tumour condition?

     

    My wife karen was just diagnosed and we dont know much about what to expect going forward?

  • Sameh shaaban
    Sameh shaaban Member Posts: 11
    edited July 2018 #64
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    Josey said:

    Hello Kerrin

    hi my name is josey.  I live in the us.  Diagnosed at 17, currently 37.  2 beautiful healthy babies.  Have you experienced any issues with vision or hearing loss?

    Hello josey

    Can you share with me your treatment journey 

     

     

  • Sameh shaaban
    Sameh shaaban Member Posts: 11
    edited July 2018 #65
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    andreakrivera said:

    I am a survivor of
    I am a survivor of medullablastoma. I was diagnosed at 22 and I am currently 24. I was diagnosed 7/4/07 and had my surgery on 7/7/07. I have had chemo and radiation. I would like to talk to someone.

    Hi andrea

    What type of chemo . Did u had 

  • Sameh shaaban
    Sameh shaaban Member Posts: 11
    #66
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    cartier said:

    In 1994 I was diagnosed with
    In 1994 I was diagnosed with this brain tumor and thank God am still enjoying life. I had surgery and a month and a half of radiation treatments. It was a scary experience but one that can be overcome. I pray and wish your nephew the best, if you need to talk I am willing... Bill

    Hi cartier

    Only radition. Didn't u get chemo

     

  • mlbeverlin
    mlbeverlin Member Posts: 3
    edited July 2018 #67
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    krissatish87 said:

    I hope all of you/your loved

    I hope all of you/your loved ones are doing great. My brother (33) was diagnosed with MB recently. He had full resection of the tumor and his Spine MRI is clear. He is pretty fit and fine post surgery. His symptoms were neck pain and slurred speech which vanished  post surgery. He is now ready for 6 weeks of Radiation.

    Can anyone confim if chemotherapy required?

     

    Need all your prayers and support. 

    Treatment Plan

    My son was diagnosed just before his 16th birthday.  He was on thhe COG 0331 protocol.  He hust finished his last chemo cycle and has MRIs next week.  I have always understood chemo to be necesary to kill off any remaning cells.  My son had a total resection and it had not spread.

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