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Jul 05, 2009 - 9:48 pm
Hi, 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 another...it simply sucks! |
Joined: Jun 2009
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.
Joined: Mar 2011
Hi, My 18 year old cousin
Hi,
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.
Joined: May 2012
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
Joined: Jun 2017
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