anaplastic astrocytoma grade 3

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  • Hopekathy
    Hopekathy Member Posts: 4
    #42
    momsworld said:

    Hi sm1235, our doctors told
    Hi sm1235, our doctors told us that there was a significant chance of it coming back also, but I have not told my daughter that because she would give up hope and until her doctors tell me there is no hope she will not know. How far into your Temodar are you? Can you tell me where your tumor was located? The doctors said that she does have a chance at beating this because there were low and high grade cells through out the tumor which they say is rare to have both through out. I don't know. I have done some research online but it is very depressing and the thought of my only daughter, my only child dying makes me sick to my stomach. I will keep praying and believe that God will help in healing her.

    My son was just diagnosed
    My son was just diagnosed with AAIII and it was inoperable. he had grade 2 and 3 in his tumor. No one told us this was rare- i thought it was a good thing (maybe not really a 3). How is your child doing?
  • momsworld
    momsworld Member Posts: 135
    #43
    Hopekathy said:

    my son was just diagnosed
    my son was just diagnosed with AA III but they were not able to remove it all. I noticed this was posted in May- how are you doing now?

    hi Hopekathy
    I'm sorry to hear about your son. How old is he? My daughter is doing well, but the tumor growth is doing better. The cancer did not respond to the radiation or chemo given. It was actually still growing during treatment. We have switched to a different hosp because the one we were at, I feel are not experienced enough with brain tumors. We are now going to Dana Farber in Boston Mass. They gave us alot more options than we thought we had. My daughter just had her 3rd brain surgery to remove new tumor growth. I wish I could say that the protocol treatment works the same on everybody, but it doesn't. What has worked for others has not worked in our case. I have decided to go a little bit more aggressive with treatment this time in hopes that this will slow down the tumor growth and hope that some new drug is discovered. My daughters life is in the lords hands now.
  • momsworld
    momsworld Member Posts: 135
    #44
    tommybear said:

    Wow...
    I cannot believe that you were spoken to like that! That is the most inhumane thing!

    There is always hope, there are miracles, good things do happen. How sad for someone to actually be a doctor and respond to you like that.

    I had stereotactic radiosurgery in December 2009 and now am having some issues with swelling and the tumor appears to be enhanced, but my doctor said that is not abnormal. He told me that normally the swelling and fluid buildup will reduce within a few months - I am on steroids right now to help. So, yeah, it might not be possible to see exactly what is going on with the tumor right now, but that doesn't mean that it has been "upgraded".

    And, with your daughter being so young, I am sure that she has got to be so much healthier and energetic than some of us "old-timers" (I'm 39!)

    Wishing you peace and hope and encouragement....

    Michele S.

    Thanks for your kind words
    Thanks for your kind words and I do have alot of hope and my daughter is a fighter. She is the strongest person I know. I have a sweatshirt that says " I wear gray for my hero" and thats how I feel. She is my hero. Miracles do happen and I have prayed for one. The Lord hears crying hearts the loudest.
  • momsworld
    momsworld Member Posts: 135
    #45
    Carrie King said:

    MomsWorld -- HOPE
    I wish I could say that I am shocked about the cold way you and your family were spoken to. We were told my husbands tumor was "in-operable" and we should "observe".

    I am here to tell you that 4.8cm tumor was reduced to 5mm and he has been back to work since Aug 11, 2010. No neuro deficits whatsoever. So much for "in-operable".

    God is the ultimate physician and healer.

    I pray for you all (I have a 12 yr old daughter also). I truly believe the patients attitude is 75% of the battle.

    Carrie

    I agree with you. My
    I agree with you. My daughter said that she is not going to die. She is so strong. I like your logo. I have a sweatshirt I wear that says that. Because they are heros. They go through so much. I believe in the Lord and I pray that he will heal her. It's in his hands.
  • jhope13
    jhope13 Member Posts: 1
    #46
    My Father
    Hi,
    I just want to say that if you keep up with a hopeful attitude anything can happen. My father was diagnosed with an inoperable AA3 in December of 2004. He was told by the local hospital that he only had between 1-3 years to live. We weren't happy with that prognosis and wouldn't accept it. He went to the National Institute of Health in Bethesda and was put into a trial. His tumor all but disappeared for about a year. He then came down with aspirgillus and they had to stop all treatment for his tumor in order to treat it. During that treatment his lung collapsed and due to his medication he had a pulmonary embolism. His brain tumor then came back because he was off of his medication for a period of time. Since then his aspirgillus has cleared up and we can concentrate on the brain tumor. Right now it has been kept at a constant size for the past 2 years and hasn't grown anymore. At this point that is the best we can hope for. All I have to say is that he is 55 and through all of that treatment he has only missed maybe a month of work. He is still working full time and is able to function very well. He occasionally has seizures and will always slur some of his words but from the beginning he has had a positive attitude. I truly believe that his unwillingness to give up has gotten him this far. He is going on 6 years and I don't doubt that he will have another couple of decades ahead of him. He is by far the strongest person I know. Keep Faith!
  • momsworld
    momsworld Member Posts: 135
    #47
    jhope13 said:

    My Father
    Hi,
    I just want to say that if you keep up with a hopeful attitude anything can happen. My father was diagnosed with an inoperable AA3 in December of 2004. He was told by the local hospital that he only had between 1-3 years to live. We weren't happy with that prognosis and wouldn't accept it. He went to the National Institute of Health in Bethesda and was put into a trial. His tumor all but disappeared for about a year. He then came down with aspirgillus and they had to stop all treatment for his tumor in order to treat it. During that treatment his lung collapsed and due to his medication he had a pulmonary embolism. His brain tumor then came back because he was off of his medication for a period of time. Since then his aspirgillus has cleared up and we can concentrate on the brain tumor. Right now it has been kept at a constant size for the past 2 years and hasn't grown anymore. At this point that is the best we can hope for. All I have to say is that he is 55 and through all of that treatment he has only missed maybe a month of work. He is still working full time and is able to function very well. He occasionally has seizures and will always slur some of his words but from the beginning he has had a positive attitude. I truly believe that his unwillingness to give up has gotten him this far. He is going on 6 years and I don't doubt that he will have another couple of decades ahead of him. He is by far the strongest person I know. Keep Faith!

    Hi
    I'm glad to hear that your dads tumor is not growing. What is the trial that he is on? do you know what medications he is on? We go to Dana Farber/The Jimmy Fund clinic in Boston and we are going to try a 5 drug regimen, 2 of the medications are a form of low dose chemo and the other 3 are not. Everyother week she will have Avastin through her port that they just put in. We were told the same about the 1-3 years. I think they say that to everyone. They said the same thing to my neighbor who has breast cancer and it has been 7 years for her. Cancer is an awful disease and it is horrible that people have to go through all this treatment. It's not only hard for them but their families as well. I think my daughter is stronger than I am. I wish I could take this away from her. I would gladly switch places with her as I have lived already. I'm not old by any means, but I have experienced the life that I want her to experience. We will not give up. We continue to pray, and believe that the Lord has good things planned for her.

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