My mom has AA3 and a low Karnofksy performancescore

Cigur11
Cigur11 Member Posts: 1
in Brain Cancer #1

My mom was diagnosed with AA3 in February 2014 after a major seizure. It is likely that the tumor was around before that because in October 2013, she blacked out unexpectedly and hit her head, causing a hematoma. 

Three different neurosurgeons said she could not have surgery due to the tumor's location in her left basal ganglia. She had radiation with concurrent Temodar, plus more Temodar after that. The tumor got three times bigger on the subsequent MRI, so Temodar was stopped an replaced with Avastin for the past 2 months. THe most recent MRI shows that the tumor is slightly smaller, but her symptoms have only gotten worse and worse since February.

I read about people with AA3 going to work and leading normal lives, which would put them between an 80-100 on the Karnofsky scale. Whereas my mom needs a walker, can't get off the bed or toilet without assistance, has been hospitalized twice, has speech aphasia, major memory problems, confusion, paranoia, and small seizures. I'd rate her Karnofsky score between a 50 and 60.

We don't know whether she will rebound if we continue Avastin, or whether to get hospice involved. It seems too soon considering she was diagnosed only 6 month ago, but her performance score has only gotten worse and worse it seems, and I worry the chemo is only making her weaker and more miserable.

 

Any thoughts?

Comments

  • Csimowitz
    Csimowitz Member Posts: 3
    #2
    My personal thoughts to cigur11

    I can relate to your comments. My boyfriend has an inoperable brain tumor. Chemo worked well until it became toxic about five weeks ago. Since then things are starting to change. The last two days are concerning me. Until now I was with him 24/7. I have hired a wonderful home health aide as he can not drive and the isolation would be intolerable. He now. Walks with a cane and is often short of breath. I am afraid that the cancer may be progressing- I'm really not sure. Monday night he was totally clear. Today he was depressed and tir ed. I never thought of hospice/ I can't go there yet. I inquired about tremodar with our oncologist but he needs to get back to us. I'm not sure what if anything I can do. He has been unable to work since first diagnosed, has short term memory issues and can be confused on occasion.( not too bad yet) I know the term kamosky score, but not how to calibrate it. I am thinking of hiring someone for four hours on Saturdays so I can run errands if necessary. No easy answer

Discussion Boards