spinal astrocytoma

hfk Member Posts: 1
has anyone had experience with a Grade 3 astrocytoma in the spine? I was dx'd a year and a half ago, had 30 radiation treatments, was on temodar for a year, took a short break and am back on it now. I would appreciate hearing about anyone else's experience.


  • Jeyda
    Jeyda Member Posts: 2
    Hi im so sorry to hear of
    Hi im so sorry to hear of your illness.
    my brother is 21 and last year was diagnosed with a grade 3 astrocytoma in the spinal cord. He had 6 weeks of radiotherapy which finished August last year. His tumour has now grown and he is due to start chemo this week. We have been searching around the world for any treatment but have been unsuccessful. He has lost use of his legs and bladder and having problems with bowel control. We live in London and have been told there is nothing we can do. Any information you have would be greatly received. How have you responded to the chemo?
  • stevoa29
    stevoa29 Member Posts: 2
    Grade 3 astrocytoma
    Hi hfk sorry to hear what your going though, I know its not nice but keep your chin up ok and try keep smiling, I was diagnosed with grade 3 astorcytoma at T12/L1 of the spine when I was 9 yrs old, I had 4500 rads in 16 factions to the lower thoracic and upper lumbar spine,I am now nearly 40 yrs old and off all medication, however I am stuck in a wheelchair due to a very bad kyphosis: severe scoliosis caused by the radiotherapy treatment at a young age, I used to be on morphine 3 times a day but I was fed up of how bad it made me feel, I told the doctors that I wanted to come off it and they said they didn't advise it and it was highly unlikely that i could get off it, but I wouldn't listen to them lol it took me a while and a lot of cold turkey but I managed to get myself off, the only thing I suffer from now really are the usual UTI'S which I sort out myself by drinking lots of water to flush it out, I go back to hospital once a year for check ups and breathing tests due to my chest wall deformity.

    If you would like to talk about anything end me a message if you like my email address is [email protected]
  • codiburkeen
    codiburkeen Member Posts: 4
    edited June 2017 #4
    My husband has Astrocytoma in his spinal cord too

    hi. We dont know what grade my husbands astrocytoma is but it does have a rare mutation. We are fixing to start radiation and chemo next week. We dont know very much about it. We are learning. I google everything trying to find something that will help. My husband is 29 years old and was extremely active. He now has to use a walker to help... any information you have will help. Thank you.