Anaplastic Astrocytoma G3 in the Spinal Cord

LSM1971 Member Posts: 1
edited March 2014 in Brain Cancer #1
My father was diagnosed in Dec 2008 with anaplasic astrocytoma in his spinal cord. He'd had symptoms all year that started with a numbness in his feet which crept all the way up to his rib cage. Initially the neuro called it neuropathy, but it didn't relate to anything and it kept progressing. In August 2008, when he suddenly lost control of the lower part of his body, the cervical and thoracic MRIs showed an undetermined mass in his spinal cord. Given the location and fear of paralysis of his legs and lungs, the doctors didn't want to biopsy the mass. After a month in the hospital and on Decadron, the mass began to shrink so my dad returned home. By November, he worsened and the doctors felt the risk of paralysis was worth taking. The diagnosis was a shock to us and the NYC doctors (who'd consulted other neurosurgeons across the US). The mass was inoperable because of the location and how it was entwined in the nerves of the spinal cord, but it completely responded to the chemo and radiation at NY Presbyterian. He's cancer-free which is great, but the effects have been devastating. He's been in and out of hospitals and rehab facilities and each time he comes home he's significantly weaker and more confused. His brain MRI is clear, but the drugs seem to have taken their toll. Because of the rarity of this cancer, no one has ventured a prognosis.

Before all of this, my dad was a vibrant, active, workaholic 70 year old man who looked like he was 55; the last time he was in the hospital, the nurse asked if he was my mom's father (not her husband)! Now, he can't do anything for himself and has a 24 hour aide to take care of him, clean him, make sure he takes his meds, tries to help him to move his legs and arms for a little "exercise."

As his adult daughter, it kills me everytime I see him (2-3x/wk) and my mom. He just grows weaker and weaker and more unaware. Is this the effect of being on high doses of Decadron for a year? Why is it that everyone else who's had AA in the brain seems to be doing so well?

I've scoured so many websites and I can't find any information on AA originating in the spinal cord. I'm looking for anyone who knows of anyone who's been through this type of cancer in the spinal cord. How have you/caregivers dealt ? What have you done to be able to "breakthrough" to the patient to help them find the inner strength to work hard and recover a little control over. Which of the NYC support groups for caregivers/family are good?

My thoughts and prayers go out to everyone who has had to face cancer in one way or simply sucks!


  • sue Siwek
    sue Siwek Member Posts: 279
    can only tell you that your
    can only tell you that your father should be taken to a teaching and research hospital. he will have the most recent care there. yes, it sucks. do everything you can to get the best care for him. you must ask and demand. a teaching hospital no matter how far you have to go is your best bet for his survival.
  • NRICH81
    NRICH81 Member Posts: 1
    My 18 year old cousin


    My 18 year old cousin has just been diagnosed with a Grade 3 anaplastic astrocytoma of her spinal cord (thoracic). Her symptoms started last July, but it took a long time to actually diagnose. She has just finished her 6 week course of radiotherapy but no one seems to know what is going to happen next. She has gotten progressively weaker with the radiotherapy and is now in a wheelchair.

    I'm sorry to hear about your dad. What happened to him after you posted? We also can't seem to find any information about treatment or prognosis.

    Thanks for any help you can offer.
  • Jeyda
    Jeyda Member Posts: 2
    21 year old brother with an anaplastic astrocytoma
    Hi in may 2011 my brother was diagnosed with a grade 3 astrocytoma in the spinal cord. This came after 3 months in hospital and completely losing use of his legs. We were told his condition has no cure and no effective treatment. He had a 6 week course of radiotherapy which finished in August 2011. In January 2012 his scan results showed a 50% decrease in the size of his tumour. His next scan in April showed no change however just three weeks later he was taken for an emergency scan due to horrendous back pain and spreading numbness. The scan has showed about a 40% increase in the tumour in just 3 weeks. They have said he will start chemotherapy in the form of a tablet.
    His oncologist has painted a very bleak picture from day one. They estimated 6-18 months life expectancy from diagnosis. We have been frantically searching for any kind of treatment that may help but with no success. If anyone has any information please please don't hesitate. My brother is amazingly strong and brave and should be looking forward to his future. We are desperate to at least give him a chance. We live in London but would travel anywhere necessary for help
  • codiburkeen
    codiburkeen Member Posts: 4
    29 year old husband with Astrocytoma in his spinal cord

    Hi. My husbandis 29 and was diognosed with astroytoma in his spinal cord, they told us that they dont know the grade but he does have a mutation called H3K27m. It makes his cancer more aggresive. We are starting chemo and a 6 week radation treatment this coming Monday. We are not sure what to expect, this is all new to us. Currently we are going to Simmons cancer center in Dallas. Did you go to a second opinion? WE need all the information that we can get. Thank you