Adult Gliomatosis Cerebri.

Brannonchap
Brannonchap Member Posts: 1
in Rare and Other Cancers #1

My father was just diagnosed with Gliomatosis Cerebriand, and because of the rarity of this cancer there isn't much information avaiable.  Does anyone have any information that could be helpful?   Any sucessful therapies or alternative therapies such as the use of canabis oils?

 

Thank You

Comments

  • Emikel727
    Emikel727 Member Posts: 1
    #2
    I'm so sorry to hear about

    I'm so sorry to hear about your father.  My father was also just diagnosed with gliomatosis cerebri.  I was curious how your father was doing and what treatment plan they have him on and if you were able to find out any more information on what might be helpful.  Sorry for all the questions.  This has been a lot to take in and his cancer is progressing very rapidly and any information could be useful. 

    Thank you. 

  • MikeyG72
    MikeyG72 Member Posts: 1
    edited June 2017 #3
    Not very trusting in doctors

    I was diagnosed in October of 2013 with a brain tumor.  They weren't sure exactly what tyoe of tumor it was.  I had surgery, and was told that they removed about 50-60% (not very reassuring) and it was a grade II Astrocytoma.  "slow Growing".  Since then, i had radiation about a half a year later.  Not sure that it did much to improve my condition.  I had follow-up MRI's and there was one small spot that they said they were keeping an eye on.  "Could just be radiation necrosis".  Didn't really have any problems for a while.  Last spring i started getting dizziness, and verigo.  I menioned it to my neursurgeon, and i honestly don't even recall what he said.  I had felt that for a while he was very nonchalant about questions i was asking him. Showed me a post-surgical MRI, and a current one (at the time) and said "well there's a lot of this white stuff in the current one..." I asked what that was, and he told me "wel, that's thought to be pre-cancerous cells, but we're not treating that, we're treating that, we're more concerned with this area back here" I was really confused.  I went to a pretty reputable hospital in Philly, and felt confident that they knew what they were doing.  The dizziness and vertigo continued, and i decided to switch hospitals, and go to MSK in New York.  Luckily they have a branch outside the city which has far easier access.  I've always heard that next to MD Anderson, they were second best in the country for cancer.  So, after a first appointment, and i had an up to date MRI, the doctor says "did they tell you that there is another spot towards the back of your head?" I was like "NO". seriously? idk, i don't feel confident, or informed by any doctors.  I read the report from the last MRI, and it says Impression: Since February 17, 2010 progression of Gliomatosis cerebri . So, what the heck?? They have since put me on Temodar 5/23 for a year with close monitoring to see if it is going to help.  I just started my 5th cycle this week, and so far nothing.  This sucks!  I feel bad for anyone else dealing with this, especially children.  Most days i stay positive, but sometimes it really gets me down.  My only savior is the almighty one.  I tell myself there is a better place than this earth, and i truely believe it, but sometimes it's hard living with the fact that my life is probably going to be considerably shorter than i anticpated. 

    BTW, i'm 44.  I'll be 45 in another 17 days Smile

     

     

     

     

     

     

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